Autism

Great article. I especially liked the socio-ecological model of disability, as opposed to the prevalent model of 'this is a mental illness that must be cured or at least treated'. Thanks.

BTW, the page does not display properly with an Opera browser (v. 9.63). The background makes it just about impossible to read the text.

Fantastic article. Although I've never heard the social model referred to as the socio-ecological model before. It does make sense, although it is harder to say.

@Tanner's Dad,In many ways, I think there's really one perspective, that of all of us who care very much about autistic individuals and about autism, and think about these issues every day. Autism is a lifelong condition and recovery is not really a relevant topic when considering the long-term and broader issues (hence, recovery's a topic on this list!).
@Martin Berg, thank you and thanks for noting that about the page not displaying properly in Opera....
@Ari Ne'eman, just thanks, if I may!

@Martin Berg, I've passed along your information about Opera to the technical staff.  Thanks so much for letting us know.

Great reading.  Kristina, I'm thrilled to see you blogging here, and Dora, I'm looking forward to getting to know your writing.

@Ari Ne'eman, re. "socio-ecological" got the term from discussions with K. MacDonald.  Like the social model only more focused on the dynamic / relationship, more about verbs than nouns.  Since it's a "more systems science-y" perspective on the model it appeals to me, of course.

Hello all - echoing the kudos to Dora and Kristina for heading up this venture, and really delighted that such a nuanced approach to autism has been given official standing at Change.org.  I really look forward to following and supporting this cause.  That said, I think Tim Welsh (first post on this thread) raises a relevant issue (though I disagree with his perspective on "propaganda"): it seems to me that there are medical/biological issues that affect the ability of autistic individuals to function at a level they would choose (certainly some autistic individuals, such as Donna Williams, have spoken articulately about issues of diet, medications to relieve anxiety, etc).  There are also autistic individuals, it seems to me, who have some serious medical issues (GI, seizures, etc) that can be addressed with diet and/or medication.  I do think it's relevant to question how much these medical conditions are *coterminous* with autism -- in other words, I suspect they *intersect* with autism, rather than "being part of" (let alone being causative), but I do think they are relevant, and that addressing medical issues can legitimately improve quality-of-life for autistic individuals.

I don't doubt that a perspective such as this will be part of the discussion, and certainly I don't believe that there should be a "cure" for autism nor that autism should be "defeated".  But I would be loath to dismiss the baby of medical/diet issues with the dirty bathwater of over-medicalization and "cure-ism".

When discussing the "environment," I think i'ts important to make a distinction between the natural environment, (which includes things like trees and mountains and animals and weather), and the artificial environment, (buildings and artificial lighting, and all the things that fall under the blanket of "society," or "culture.")  When we hear the term "environment," more often we think of the former type: we have "environmental preservation," "environmental policy," etc., but with regard to disability management, almost always it's the artificial environment that needs to be attended to.  Unless we make this distinction, it still sounds like we're putting the onus on the disabled individual when we say that they're out of alignment with their environment, because "environment" is assumed to be natural and non-negotiable.  In fact, the artificial environment has been created to accommodate people, and it creates "disability" when it fails to accommodate all people, and that's the environment we're talking about here.

The term "autism advocates" has always been a little confusing for me. I am associated in a minor way with a voluntary advocacy organisation which does individual and systemic advocacy for disadvantaged people. It may be nitpicking but how do you do advocacy for "autism"? The term itself suggests to me that somewhere, someone has lost sight of the core issue, that there are real people involved here, vulnerable people with real needs and real human rights. Can I recommend the work of Wolf Wolfensberger to anyone who wants to explore the subject further.

Dora and Kristina, thank you for posting this.  I finally have a single source I can go to when I need to summarize the major issues that autistic people, young and old, are faced with, and how those issues don't seem to improve much with age under the bureaucratic and sociological setting we currently have.  In particular, the "genius/semi-moron" stereotype and the various other negative images we have to endure should help when explaining the importance of certain bills to legislators when I head upstate to do so next month.

How do I advocate for Autism? Phil I work around the clock to bring awareness to people about being tied to chairs, locked in time out rooms, voted out of classrooms, kicked out of church, tasered in Des Plaines, and murdered in wisconsin and Illinois.  I host and Moderated the Autism Health Care Twitter Day which was part of the Obama-Biden Transition project on Health Care Reform. I raise awareness that maybe just maybe things we put into our body from the air, water, food, and medicine may be implicated in the cause of Autism. I work to bring legitimate therapies to light and expose those taking advantage of our community. That is just a partial list of what we do. If that is not advocacy... Tell me a better word for it?

Hi Tim, Yes sounds like you are doing some serious advocacy there, among possibly some other things. My point, which I may have not have made as clear as I could have, is that advocacy is done for people not "autism" Now I know that may be splitting hairs but the organisation I am associated with spends some time pondering this issue and checking that they are doing true advocacy for the vulnerable person concerned. Sometimes the lines can get a little blurred and the advocate can take on issues raised by others. For example while the parents and the childs issues may be the same, nevertheless the advocate is at risk of losing his focus on who he is advocating for if he relies only the parents input.

I notice on some forums that some parents have become so enraptured by their support or opposition to a particular diet or therapy that it becomes their sole focus. The value of the particular process they are endorsing is not the point; the issue is that they have lost their focus on the person or group of people that they claim to advocate for.

 When this happens they are at risk of failing to follow the basic principles of advocacy and not be solely on the side of the disadvantaged person and this dilutes their efforts. Conflict of interest can occur. Also conflict around what is in the best interest of the disadvantaged person is one of the enduring challenges of advocacy.

I think that if we clarified that "autism" advocacy was actually advocacy for people with autism and followed the principles of advocacy then we may be able to start to resolve just a little of the conflict in ASD circles.

So the answer to your question is yes what you are doing is advocacy, advocacy for better medical research and advocacy for better govt. Awareness raising by itself is not advocacy. But all the above are goood worthwhile activities and I thank you for your efforts. I'm sure that somewhere in there is also some advocacy for people with autism and perhaps some support for people doing self advocacy or parent advocacy.

Part of the reason for my preoccupation with what is and isn't advocacy is that our organisation receives some funding from Canberra. When you have to explain what you do to federal  bureaucrats  you risk getting like that. It's also 1am in my timezone....

  

This is a wonderful topic. I was excited to be directed to this blog, seeing two people working together. And I really like that you're both taking a solid stance on the "issues."

Melody
http://www.asparenting.com

Hello,  I was just told about this blog and glad it is here.   I especially like the article and the section on theory vs. effectiveness.  One of my big concerns is employment for Autistic Adults and how effective are organizations, whose purpose is to support the disabled in work opportunities.  How good are they.  Employment is a big issue and important for Autistic individuals...  and there is a lot of work that needs to be done in this area.

Also I am the founder of McTrans,  Montgomery County Transitioning Adults Group for families.  I will share autism.change.org site with others on our e-group so they may participate as well and invite others in Maryland and other states to join us as well.  See site www.mctransitions.org   for more information.

Reda

I am concerned by your description of the controversies--and even more concerned that you have somehow come to represent the voice of autism for the Obama change initiative.

To say that a "cure" is not possible is to ignore those children and adults, several of whom I've met, who have recovered to the point they met no diagnostic criteria.  To say that a "cure" is not desirable is to say that it is ok for all those who suffer from real and painful physical symptoms like chronic diarrhea, constipation, GI inflammation, headaches, etc.--it's ok for them to continue suffering and live in pain.  That's a far cry from your stated goal of seeking to improve people's lives. 

If you really think that there is no epidemic, then please find all the adults who would have met this criteria from the 1930's on.    If the rate of incidence had remained static, then everyone of us would know a family who had institutionalized an adult with issues similar to what we consider autism today--yet we do not.  While most of us know of families of a "socially odd" aunt or uncle who never married, those people are a far cry from those who are not able to speak, are not toilet trained, suffer from various physical symptoms, and can not care for themselves at all.

To assure people that there is no reason to fear vaccines is to call all those parents, like myself, who have watched their child react liars.  The only way to settle this question is for an independent third part to compare vaccinated and unvaccinated children.

And who represents people with autism is a huge controversy--one that is made even more controversial by the opinions expressed on this blog.  Your words show that you have little compasion for the physical pain that my son has suffered.  Also, by asserting that there is no need for a "cure" you are also asserting that there is no need to make any special accomodations for you either.

 
Why are 1 out of every 6 children today now Dx'd with a neurological disorder?

As I've already said, you're only hurting yourself with these wild and unsubstantiated claims, John.  If you're such a great father, focus on your son and stay out of politics.

@John Best,Thanks for the comment.
@Sonia Smith,Regarding the claim of an "epidemic," more and more adults are being diagnosed as being on the autism spectrum. Also, the diagnostic criteria for autism have changed so much since the 1930s---as has our understanding of autism----and these changes both affect how the prevalence rate of autism is determined. Also, criteria and understanding of neurological disorders more generally has changed, as has the overall diagnosis of children with such conditions.  More on these points is in <a href="http://www.unstrange.com/essay.html">this essay</a>.
As my son (who has been known to have difficulties with "physical pain" such you may be referring to in regard to your own son) has gotten older, I have found that some of his needs have become more closely aligned with those of autistic adults at all points of the spectrum.  Thank you very much----

I also am concerned with the selection of the people here and their views which are very narrow and do not seem to understand that there are physical aspects to autism that are capable of being alleviated or removed.  I do not like to use the word "cure", since no one knows what causes autism it can't be said to be "cured".  But I have seen kids who, with biomedical and/or behavioral therapies, no longer would meet the diagnostic criteria for autism.   And that is a GOOD thing.  Just because these therapies and interventions don't benefit all kids doesn't mean they don't help with a significant number of kids, and they should be available to all families.

Sorry, but most parents do not feel that autism is just being "different".  It might be fine and those who have it may come to feel it is a part of them and they don't want to change, but let's not pretend that it isn't a disability.  I am quite suspicious of some so called advocates who are self-diagnosed, they don't really seem to have much in common with my two boys.

It is discouraging that change.org seems to have picked two people who don't really want to help families find things like effective early intensive interventions, research on biomedical treatments, etc.  I hope they decide to add some more diverse viewpoints in the future.

"I am quite suspicious of some so called advocates who are self-diagnosed,"
That is a pretty serious allegation, do you have proof?
"It is discouraging that change.org seems to have picked two people who don't really want to help families"

That also is a pretty serious allegation.  Do you have proof of this?Do you think there is nothing to learn about autism unless it is written about by someone not autistic? or do you think it is only valid if an autistic agrees with your opinion?
I see that you are for LBGT rights based on your profile.  Are you also for the rights of autistics to speak or write about their lives and or express opinions which may be different from yours or your child's?  
I was a child put through biomedical fads during the 70's.  From acupuncture to gamma globulin injections to energy healing, mega doses of vitamins and daily castor oil.  None of it did any good then.  I'm still autistic.  When does the right to be free from harassment end?  
"but let's not pretend that it isn't a disability. "
Can you please show an example where either of these bloggers said autism isn't a disability?  I'm autistic and you know what, I'm also disabled.  Can I speak out now, or would you like to see my medical papers first?  
In case you didn't notice, this is a progressive website and as such, I would expect the owners to allow the minority and disenfranchised an opportunity for expression.  
You remind me of my aide in first grade that told me I was retarded.  She had low expectations of me and never allowed me to participate in activities.  Now I'm an adult, with thousands of personal accommodations made on my part and you want to shut us up and say, well, if you have managed to overcome obstacles, then you are no longer qualified to express yourself.  Shame on you.  I hope if your child can overcome obstacles and express themselves, they won't run into such a bigoted response.

John, I pity you.  You're so consumed by hatred that you can't focus on anything else.  I honestly can't understand why you feel the urge or need to behave like this, but I can only hope you somehow come to your senses, or, better yet, respectfully withdraw from such activities regardless of your opinion.

Kudos on a well balanced and thought out blog. Finally, a blog where the principals represent both autistics and those that love them. Myyounger son, who has CP, is part of every decision we make for him. He has substantial input, and his ideas are respected.

I spent a lot of time reading the questions when I searched on Autism. What I found was that the overwhelming majority of questions concerned themselves with helping families with handling the massive expenses and demands that they have because one, or more, of the family just so happens to be autistic. People need help with insurance, proper education services, family support, help with safe and effective treatments. It looks as if blog will be a voice for change.

As for the naysayers, Mr. Obama has made it quite clear that his administration is de-politicizing science, and will be science based. His designees from Eric Holder, the AG, on down, are all sound thinkers and science oriented.

PS To admin. The spell checker does not work.

Robert,

Shame on you for not accepting my viewpoint, that just because someone has autism or is autistic, doesn't make them an authority on autism except of course, on their own.  Just because someone has schizophrenia doesn't make them an expert on it, or make their knowledge more valuable than someone who doesn't have it. 

I do read and listen to all folks who claim they have autism, I believe some of them do and some of them don't, but think they do.  For example, there is some evidence out there that Amanda Baggs isn't necessarily autistic.  I don't really know except there is some evidence that she has not always been as impaired as she shows herself to be in the videos that are out there now, that she had some kind of a break down when she was a teenager.  Perhaps she is just expressing herself in a different way or perhaps she is mentally ill.  I don't know. 

But when I see others who claim to be autistic railing against any kind of intervention because it's not "accepting" autism, that is ridiculous in my opinion.  We teach typical kids all kinds of skills, sometimes whether they want to learn them or not, and I think we shouldn't have lower standards just because a child has autism.  I don't see people asking typical 2 or 3 year olds if they want to be toilet-trained or learn how to behave, we just do it because that is what expected of them and is what will help them realize their full potential in the real world.

Now I don't disagree with many of the self-advocacy points once someone reaches adulthood, if they are capable of expressing their needs and wants somehow.  There does come a point at which a person is going to be whomever they will be for the most part.  But until that point, it is troubling and frankly negligent to advocate against using effective interventions for children, because in the long run it will probably prevent them from expressing themselves to their potential. 

I strongly believe that effective intensive interventions should be available to every family and child on the spectrum, and then once you have that you can help your child realize their potential, and then you can more easily accept whereever they turn out to be as an adult.  Because you know you were able to try whatever they might have needed.

You have no right to call me bigoted, you seem to be just as bigoted since you don't know me or my kids.  At least I am being honest.  Having a disability does not make some one less of a person, but it does impair their abilities in some way and makes their life harder.  Maybe they don't mind or they feel the positives outweigh the negatives.  But again, let's not pretend the negatives aren't there.

I was disappointed to read what Chew and Raymaker had to say about being distracted by those in the community that think there is a link between vaccine and autism. I certainly hope this point of view is not representative of the Obama transition team.

The photo of those two hands reminded me of the children that came to my pediatric office in the 1990's presneting with symptoms of having the skin peeling off their hands and sometimes feet, the latter being less noticeable. It wasn’t bothering them; it was bothering their parents who knew it wasn’t normal to have skin peel off your hands. All I could tell concerned parents was that this must have something to do with the body trying to rid itself of something that didn’t agree with it, but I was clueless at the time.

Years later I realized I was looking at mild cases of a clinical entity that had completely disappeared from the pages of medical textbooks. This was a mild form of Pinks Disease. Pinks Disease (Acrodynia) was the name given to a form of mercury poisoning young children developed in the first half of the 20th century after they had been given a teething powder that contained a chloride salt of mercury. It was very effective, because the mercury killed the nerve tissue in the gums of the teething babies. The skin on their hands and feet would peel revealing the pink new skin underneath. So, why was I seeing a mild form of Pink’s Disease in the 1990s?

I started to perform provocative urine toxic metal tests on the children in my practice, especially children with neuro-behavioral disorders. I found that most of the children I tested had abnormal levels of lead or mercury. In 2006, I was granted an audience at the CDC, specifically with James Pirkle, MD, PhD, Deputy Director for Science, National Center for Environment Health.

I presented my findings including showing how when the metals were removed affected children improved on neurocognitive function measures. Dr. Pirkle personally told me this was important work and many of his collegues voiced there concern to me that especially mercury levels were of great concern to them.  It is an accepted fact that the umbilical cord blood level of mercury is so high in American babies that the impact on their intelligence is costing the US economy 8.7 billion dollars a year.

Regretably, Dr. Pirkle and his collegues do not set policy at the CDC nor do they control the purse strings at that agency. To say that those that do have control alos have a mixed agenda would be an understatment.

Regarding all those so often quoted epidemiological studies that have not shown a link between vaccines and autism, one must take a step back and have a little discernement. Those 15 well positioned studies in the literature do not prove that the vaccine-autism connection is a myth.

The Institute of Medicine’s final 2004 report on vaccines and autism recognized that without biological markers of autism subpopulations at risk, further epidemiology would not be helpful. In other words, they did not say that vaccines don’t cause autism—-since without knowing what autism is, science cannot determine what it is not.

It is highly probably that there are multiple autism(s) with multiple genetic and environmental triggers (mercury and pesticides being just two on the list).

This simple truth about autism greatly reduces the stastical meaning of even the largest epidemiological studies.

Clearly, there is post-vaccination encephalopathy, but what are the mechanisms? Is there any treatment? Can it look like “autism?” There are many unknowns here, as no concerted effort has been made to understand the scope of post-vaccination encephalopathy.

Since medicine does not understand post-vaccination encephalopathy, and we don’t know what factors could increase or decrease its incidence (thimerosal, aluminum, live virus combinations, diet/metabolic factors, multiplicity of vaccines, pesticides), it would behoove us all to find out, not pretend the problem does not exist or that it is a distraction.

We can now perform genetic screening to determine who may react poorly to smallpox vaccine—this strategy might also benefit children with genetic susceptibilities that cause them to react poorly to other vaccine.

This is much bigger than just autism,  there are several studies linking vaccination practices to autoimmune disorders-- like the recent Manitoba study demonstrating that a short delay in DTP administration reduces the rate of asthma by 50% (Delayed DTP immunizations and the risk for pediatric atopy and asthma .  Journal of Allergy and Clinical Immunology , Volume 113 , Issue 2 , Page S304 C . Johnson) and the AAN Neurology publication showing that one brand of HepB vaccine increases the risk of childhood MS by almost 3 times (Hernan, M. Neurology, Sept. 14, 2004; vol 63: pp 772-723.).

There is a void of randomized controlled trials to support the continued growth of the current CDC/AAP vaccine schedule, and parents are beginning to ask questions about the science and there is no science.

What do you think would happen if the man on the street learned that many live virus vaccines are contaminated with reverse transciptase and avian retro virus? What does that mean? It means that we are jabbing children with material that could cause viral DNA to be written into their DNA and cause cancer several years later.

We can go into denial about this but that doesn't change the reality. A fortress of denial surrounds this issue and I hope there is someone on the Obama staff that hasn't yet swallowed the Kool-Aid.

www.BodiesinRebellion.com was set up to help deliver this concern to the President Elect.

We have choice if we want the human animal to continue on this planet. We have to really think about what that means, because one cannot fool with Mother Nature and not take responsibility for doing so. While adaptable, we are a relatively fragile life form and have been rather blessed to survive on this wonderful planet up to this point, but the Earth will survive, and it will survive just fine without us on it. We are one of the newest species on this planet and as the saying goes, “Last one hired; first one fired.” This is our fate if we don’t wake up.

K Paul Stoller, MD, FACHM

I don't know what you're going on about, but I'm no vaccine injury.  Signs showed up in me before my initial shots.  I didn't have a regression, just a delay and willful noncompliance.  If I didn't respond to someone, it was because I deemed it beneath my attention, or otherwise unrelated to me.  What you would call "abnormal" is perfectly normal and natural for me and other autistics.  Besides, the standards used are often culturally biased and arbitrarily selected for the convenience of financiers.  There is little to no attention paid to the fact that we need to focus on quality of life issues, and that everyone's focusing on portraying us as tragedies AGAINST OUR OWN WILLS.  We don't want you to continue to lie about us.  We're not the tragedy here.  The real tragedy is the intolerance we face for being different.  I equate it to a gay-bashing, a pogrom, or a KKK-sponsored lynch mob, because that IS what is equivalent to.  Discrimination is discrimination, and you can't justify it by attempting to classify us as less than human.

Barbara said"
"But when I see others who claim to be autistic railing against any kind of intervention because it's not "accepting" autism, that is ridiculous in my opinion"

So, if an autistic somewhere says don't help any autistics, then all autistics are that way?  Please show me where any autistic person has said they are against educating autistics, expanding civil protections for autistics, expanding services and independent living.  Now, if you are talking about non-evidenced based science such as chelation, lupron or other stuff, then you need to prove your points based on the science, not whether someone agrees with you or not.

 Stoller, it was quacks like yourself, your predecessors who told my mother to feed me castor oil everyday, give me gamma globulin injections, subjected me to acupuncture as a 4 year old under sedation because they were sure they had the answer.  

Stoller, Take your case to peer reviewed science journals.  A real scientist doesn't proselytize on blogs, they gather evidence and present it to their peers and have it go through a rigorous review to end up in a peer reviewed journal.  Autistic children deserve the same ethical and evidence based medicine as non-autistics.  

"I was disappointed to read what Chew and Raymaker had to say about being distracted by those in the community that think there is a link between vaccine and autism. I certainly hope this point of view is not representative of the Obama transition team"
Stoller, read Obama's disability policy.  It was written by disabled activists like Raymaker.  Look at Obama's science team, its evidence based.  Sounds like there may be no place for you and your delusions there.
When was the last time you publicly wrote about the seclusion of autistic children in public schools?  When was the last time you publicly wrote about autistic children dying by restraint in public schools?  When was the last time you walked the halls of your legislature fighting to keep services available for developmentally disabled adults?  When was the last time you argued for expanded job opportunities for developmentally disabled adults?  How about independent living?  
Here is a question for you Mr. Stoller, name me the ACT Obama supports that addresses just one of the issues I mentioned above?  Whether you admit you don't know it or not, you will after this question and frankly I don't care to take credit for that because you will learn something.  
Quality of Life issues for autistic people are being ignored and hijacked by you anti-vaxxers because all you people care about is your stupid vaccine issues.  

I won't even dignify your last comment with a direct response.  You DARE to utter such filth in what's supposed to be a respectful discussion, then you don't belong here.  How dare you try to blame the child for an adult's ignorance and malice!

For the moderators to deny the environmental causes of autism and denigrate the effectiveness or desirability of therapies in a semi official forum is disturbing. 

What was one of our mantras during the election?  HOPE.  If you don't hope for effective therapy, please go back to what you were doing.  If you don't hope that our government will come clean about vaccines as the only tool of public health policy, please continue to regurgitate Eli Lilly press releases.  I'm not here to support the status quo, which our moderators appear to in this piece, I'm here for our second mantra, CHANGE.

You will find that experienced parents of spectrum kids are able to cite studies and argue every point of the science discussed.  While intended to stir passionate discourse, at which it succeeded, this piece also points out that the moderators need to up their game if they are to be effective in a national forum about which very much will be said.

I am confused as how to Obama wishes to help Autistic people an Aspie ever when he appoints a guy who lies about a budget defiect to cut $26 million from a cities special education budget (much of that being aides that autistic spectrum children use to function in a mainstreamed classroom) while also increasing the amount of administrators making over $100,000.  While I didn't agree with everything McCain said and did, being the husband of a former special education teacher he probably wouldn't have done that.  We in the autism community need to fight this appointment in any means neccessary, before he gets to a higher position while actually having budget problems.  I realize most people here believe Obama is God... but maybe you will at least fight with him on this issue.

P.S.  Read this as a source and do some more research for yourself: http://www.substancenews.com/content/view/425/88/

That should read "and aspies"... sometimes I mistype things.

Ender, I agree with you on the Arne Duncan appointment, it was a terrible appointment.

John Best himself should be controversy number 11. He has supported euthanising Autistics amongst other horrific views and hateful bile against Autistics.

Mr. Best, you are your own worst enemy but you are a creation of the Ken Stoller's of this world.

Wow your the first, it seems like everyone in the media (even the conservative media) loves the guy, we need to fight his appointment now but no one cares enough to tell everyone how much this guy sucks.

Scott, autistic/disabled self advocacy shouldn't scare you nor should you be paranoid that its a product of Eli Lilly.  Wasn't it McCain who pandered to you folks?   

Ender,
Read Huffington Post's column today by Bill Ayers about Arne Duncan.  He nails Mr. Duncan.  If conservatives love the guy, then you really have to wonder what the hell Obama was thinking. Frankly, I've been very disappointed with most of Obama's appointments (too center right for me).  However, I love his disability policy.

John Best should be controversy number 11. He has called for the euthanisation of Autistic amongst other horrific and disgusting claims based in hate and fear. He should be locked up.

Ender,
Here is the link:  http://www.huffingtonpost.com/bill-ayers/obama-and-education-refor_b_154857.html

His disability policy means shit if its not backed up by anyone or anything.  You appoint a guy who will cut the special education budget you aren't showing much concern for disabled people.  Actions speak louder then words, remember the 2000 Democratic Party Platform talked about invading Iraq... I have always heard that was just talk, its actions that count.

"His disability policy means shit if its not backed up by anyone or anything.  You appoint a guy who will cut the special education budget you aren't showing much concern for disabled people.  Actions speak louder then words, remember the 2000 Democratic Party Platform talked about invading Iraq... I have always heard that was just talk, its actions that count."
I can't disagree, your correct of course.  

I'm just glad that nobody pays attention to you except to humor you as one would a small child who is incapable of knowing any better.  I look forward to the day when you realize your hate speech is actually helping people like me get ahead in this world...

Oh, that comment was meant for John, who clearly is advocating genocide.  To you, I have only one comment: Sieg Heil!

"Robert Adams,
I'm an ex-soldier.  I swore an oath to defend my country from domestic enemies.  People who poison babies are domestic enemies.I'm just doing my patriotic duty here and I'd be happy to rid my country of the likes of you."
Wow, didn't take long for the death threats did it?  I hope you keep posting Mr. Best.   The fascism you display is really what is behind the movement to deny autistic people a seat at the table, inclusion, education, independent living and dignity.  Your a wonderful spawn of the Ken Stoller's of the world and an excellent representative of why change.org chose the bloggers it did.  Kudo's to the web owner!

David Kirby, crack journalist and paid hack of JB Handley, confuses change.org with change.gov in his latest Huffington Post Blog. Go see it before it changes or disappears.  This is an example of great "autism" journalism from Ken Stoller's folks
http://www.huffingtonpost.com/david-kirby/obama-transition-website_b_154921.html

John Best, I thought of you, now I will think of you no more.

This is written as if from a HF autistic angry adult...My son went from having incredible belly aches, tantrums, frustration from lack of being capable of expressing himself.To a very happy 2 year old. Just from diet and a few supplements. He is still autistic and I love him just as is..of course.. dont STEREOTYPE the parents that do seek alternative treatments to help their children
FEEL BETTER..HAVE LESS ANXIETY ETC " Helping their child be their best.  Parents who choose to send their children to private schools in hopes their kids will be more successful..dont get frowned upon. Very negative article and I take offense

"To say that a "cure" is not desirable is to say that it is ok for all those who suffer from real and painful physical symptoms like chronic diarrhea, constipation, GI inflammation, headaches, etc.--it's ok for them to continue suffering and live in pain."

This is simply NOT TRUE.  This is a pernicious strawman perpetrated by those who, for whatever misbegotten reasons, seek to deny autistic self-advocates and their allies their rightful role in policymaking about autism.

Treating these real and painful physical symptoms is essential -- but has nothing to do with autism.

The reality is that all too many of those on the autism spectrum who DO suffer from real and painful physical symptoms like chronic diarrhea, constipation, GI inflammation, headaches, etc., are not getting the treatment for those PHYSICAL MALADIES SEPARATE FROM AUTISM that they should be getting -- and that nonautistic patients stand a much better chance of getting -- because these things are swept under the rug of being "part of the autism", and either ignored, or inappropriately treated by purported autism "cures".

I think we have to insist that medical providers treat these physical maladies in autistic patients the same way, and to the same standards of care, that they are treated in nonautistic patients.  Without quackery and without conflating them with "curing autism".

Lisa, nothing wrong with trying to reduce anxiety.  Nothing good comes from anxiety and I don't know an autistic that wouldn't want a cure for anxiety.  

First I have to say how sad it is to see grown people of relative intelligence being so cruel and disrespectful of each other. This reminds me of why I left the field of autism.

It was said in the blog post that there are probably multiple causes, and did not say that the environment was totally out of the question.

I would also like to say something about Dr. Chew since she has quietly, and I think appropriately stayed mostly out of this argument. I have followed her blog for some time, and do not always agree with her. But I know this, she has fought long and hard to provide her son with everything possible. She does not shun treatments that are shown to be beneficial. She has worked with diets. And she would never tell a parent to ignore a child in pain and just accept it. She DOES believe that treatments should be proven safe. She DOES believe that respecting people with autism is very important. And she DOES want to see everyone live happy, healthy lives.

The truth is that the evidence of causes and the effectiveness of treatments is varied at best. As are people with autism. I have worked with many young children with autism in various therapies. Some children respond beautifully to one, and not another. Some to behavior interventions, some to diet. They are all different. And any child in pain or discomfort should be helped. Nobody is saying otherwise.

So please, everyone take a breath, step back and try to find a way to help people instead of arguing and name calling.

Sad to see that while the Obama team supports science, they are to be villified for it.  Keep up the awesome work, Kristina and Dora. 

When I was about to read this article, I thought it would present both sides of each controversy.  However, it was filled with personal bias.  The writers are very close-minded.  I scanned the comments, and it seems that most disagree with the information presented.

Autism is more like a symtom.  There are many causes (or a combination) and it manifests differently in people.  One treatment or therapy works for one, but not another. 

As a parent of a child with autism...Of course I want to find out what causes it, so I can take steps to prevent it; of course I want the best for my child and I will fight for it; of course I want funding for disability services and health plan coverage; of course I want to public to be accepting but also outraged that more has not been done; of course I want to find a "cure" for the medical aspects such as gastrointestinal problems or sensory dysfunctons; of course I want a greener environment, because many other afflictions are on the rise as well such as ADHD, asthma, food allergies, etc.; of course I want the new administration to take action with coordinating research and awareness efforts--will Chew and Raymaker represent all of us?

Nancy, in case you were confused, this is not Obama's transition website change.gov
Autism is no more like a symptom than Down Syndrome is a symptom, homosexuality a "choice", etc.  The sooner you relieve yourself of those notions, the more effective advocate you will be for your child.  
Unlike many here, Raymaker has more experience living as an autistic.  When autistics are constantly attacked, even by folks that should be inclined to support their expression, they are likely to develop a unique view unfamiliar to the person just recently exposed to an autistic person.  
If one day your child can express himself on a blog, how do you want him to be treated?  Would you like him to voice his opinions on what his life is like, or would you like him to stay silent and allow others to define him in detrimental and inhuman ways?

Hi Ken Stoller -

<i>We can now perform genetic screening to determine who may react poorly to smallpox vaccine—this strategy might also benefit children with genetic susceptibilities that cause them to react poorly to other vaccine.</i>

Indeed.  In fact, polymorphisms to a particular gene known to increase adverse reactions to the smallpox vaccine has been shown to be associated with a diagnosis of autism.  Go figure.

http://www.ncbi.nlm.nih.gov/pubmed/18454680?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/16917939?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://www.jpands.org/vol9no4/boris.pdf

Your posting is a rare application of logic and critical thinking skills when evaluating if our current suite of studies are capable of answering anything regarding vaccines, as opposed to answering things about thimerosal or the MMR.  Very nicely done.

- pD

Its very easy to tell who the empty noise making vessels are in this thread.

1) They refer to this website as having anything to do with Barrack Obama.

2) Their name is John Best.

re: Vaccines. It is simple. Is there any peer reviewed journal published evidence that any vaccine, any vaccine component or any vaccine schedule causes autism? The answer is no.

pD - thats a bit misleading.

The first paper you link to (abstract anyway) doesn't mention autism. The second doesn't mention vaccines.

The third is from jPands....is that really a good source do you think?

Dora and Kristina, thanks for this blog. When I saw that the Obama campaign was going to discuss autism I feared the worst of anti-evidence, anti-science rot would result. Instead we get good, evidence-based, credible spokespeople who are out to help autistic people, not to exploit them with bogus cures and claims thoroughly debunked vaccine scares.

It's funny that John Best seems not to understand how scientists conduct and screen empirical medical research, judging by the hysterical way he is using 'peer review'. But then, this is the dangerous man who wants to kill - yes kill - pharma CEOs over a long-since-debunked theory about thimerosal, which hasn't been in vaccines for ages and ages at any rate!

"We've known since 1999 that vaccine makers poisoned our babies with thimerosal but Bush did nothing about it.
Will you arrest the CEO's of these companies and put them to death for this crime?"
John Best, Londonderry, NH - Health Care

I don't mean that to be a simple ad hom. John, I agree 100% that CEOs are generally foul boffins creaming money off the poor and exploitable, especially those in healthcare. However, I wouldn't put any of them to death. Scream 'PHARMA SHILL LIAR!' and other facile remarks all you like, but the so-called link between thimerosal and autism was a brief, quick, long-since debunked scare.

Congratulations on a well-written blog regarding the controversies -- and the posted responses show exactly how ugly these controversies are.  A professional friend always told me that in parents of children with autism, anger was grief turned sideways.  There is a lot of anger here and a lot of blame.  The primary focus of an autism agenda has to be on services, supports, best practices, inclusion, employment, housing, etc.  The focus on cures and vaccines is a throw back to a medical model and will undermine efforts to build communities in which everyone is accepted.  Having a focus on supportive communities does not preclude, but actually supports, good interventions, including more alternative interventions.  I worry about families where parents' anger defines them and their child.  Whatever one's beliefs about causality, imagine what could be done if everyone's focus turned to services and supports? 

Catriona,
I couldn't have written it better than you did.  Grief is real in these parents and I hope they can get help for that grief in time to develop a healthy relationship with their child, much like we see with the Down Syndrome parents whom seem to have a healthy relationship and acceptance of their children as a group.

Catriona Johnson,
I think you have your facts backwards.

We used to have to count solely on services and supports for autistic children before we learned how to cure it.  Now that a cure is here, we should make sure every child has the opportunity to access that treatment.  Then they won't need any services or supports.

Hi Kev -
"pD - thats a bit misleading.
The first paper you link to (abstract anyway) doesn't mention autism. The second doesn't mention vaccines.

The third is from jPands....is that really a good source do you think?"
I think what you have written is rather poor deflection.  Lets review what has been established through observation:
1) People with a polymorphisms in MTHFR gene are found to be more likely to experience adverse reactions to the smallpox vaccine.  
2) People with autims have been found to have polymorphisms in the MTHFR gene at increased rates compared to their non diagnosed peers.  
From this, can we draw any conclusions at all concerning the likelyhood that children with autism may experience adverse reactions at increased rates when compared to their non diagnosed peers?  Have we really learned nothing with these two pieces of information? 

If you were able to show me some other studies, showing for example, a lack of adverse reactions to vaccines (or other pharmaceutical agents) with MTHFR, then we might have some evidence that there may not be relationship.  In the case of vaccines, what we have is a near complete dearth of information on the subject.  Try a pubmed search of MTHFR and vaccines to see what I mean.  
You hurt your cause more than you might think by being intentionally obtuse.  

As for jpands, even if we accept that this is not a reliable source of information; we still have another, indexed paper showing the same thing.  And lets not forget, the authors of those papers weren't scanning the genome at random looking for polymorphisms; in fact, they were looking for mutations in very specific areas because of what has been observed at a clinical level in children with autism.  If you observe that children with autism have increased homocysteine and consequent alterations in transsulfuration metabolites, you go looking for polymoprhisms in genes known to be associated with such alterations.  Lo and behold, they found associations with those genes.  

Jpans may be unreliable (?) ,but please consider the magnitude of the coincidence necessary for the data in jpans, the second link, and observed clinical measurements all to be faulty in the exact same way.  I'm willing to conisder that it may be random; do you have anything in the way of evidence that we should consider such that MTHFR polymorphisms and/or increased homocysteine levels are NOT associated with increased risk of having a diagnosis of autism?  Do you have any studies on standard childhood vaccines and the MTHFR polymophisms?  Lets discuss those pieces of evidence.
- pD

ps - (Have you figured out how to italicize or blockquote or anything in this place?)

Here is David Kirby's revised comment, I think it's worth reading for a different viewpoint well expressed:

Change.org v Change.gov and Autism Recovery Yesterday, I received several emails from parents of children with autism who were concerned about an autism blog that they thought was posted at the official website of the Barack Obama Transition Team, www.change.org. On the blog, it says that, "Recovery from autism is neither possible, nor desirable" Shortly after posting it, someone alerted me that this website was at www.change.org, and was not affiliated with the President Elect. Though I take small comfort in knowing I am not the first person to make that error, I take responsibility for the mistake. However, I am not sorry for what I wrote about autism recovery. The basis message remains the same. I repeat some of my original post again here, which I will also send to change.org: "Recovery from autism is neither possible nor desirable," Those words were written by the two women hired to head up the new autism blog at www.change.org -- Kristina Chew, who has a son with autism, and Dora Raymaker, an adult on the autism spectrum. These women believe that autism is a genetic disorder that children are born with, and is simply part of natural human diversity. They are generally opposed to those who would seek to "treat" autism, or try to recover a child from the spectrum. I am sure that Dr. Chew loves her son very much - and she loves him just the way he is. That is fine and admirable. But Dr. Chew does not speak for the countless thousands of parents that I have met who love their children just as much, but don't think of their children's condition as inevitable, nor as something to celebrate. For these thousands of parents, autism is not a quirky nod to human diversity. It is a nightmare without end. I have seen their wonderful children. I have heard them wail in pain the whole night through, bang their heads into dented closet doors, hang their inflamed and pain-wracked bellies over the sofa back in vain attempts for deliverance from the agony they cannot describe, because they can no longer speak. I have seen children with autism run out of the house naked and into the cold, black night, only to be found hours later wandering down a lonely back road. All of these children were perfectly normal before they "got" autism, at around age two, or so. Like their parents, I cannot look at them without thinking that recovery from autism, for them at least, is most desirable, indeed. But is it possible? Based on my personal experience over the past five years, it is. I have met dozens of children who are now completely, or almost completely "recovered" from the disorder. They have had their diagnoses taken away. Their state-sponsored services have been happily jettisoned. These kids are virtually indistinguishable from their peers - with girlfriends and boyfriends, teammates and college plans. But they did not just spontaneously recover - they were recovered, through behavioral therapies, dietary changes, vitamins, biomedical interventions, or various combinations thereof. So, the people who were chosen to run this autism blog don't want to find treatments for autism. They don't believe that autism is epidemic, and don't think there are environmental factors involved in its cause. In fact, they are not particularly interested in even finding out why children have autism in the first place. "Focusing on what causes autism diverts attention away from considering issues of pressing concern to actual autistic persons and their families today," they wrote, which seems like an odd representation of a man who ran for President on a pro-science agenda. Everyone is entitled to their opinion, and to the right to express their opinion. Parents such as Dr. Chew have the right to withhold autism treatments from their son. And they have every right to question - and even criticize - those parents who do want to treat and recover their children. Like many Americans, even President Elect Barack Obama has an old, dear friend with an autistic child. It is hard to imagine the President - or anyone for that matter, saying to this parent: "I do not think we should devote resources to finding out what happened to your son. I do not believe there is anything we can do to make him better, and it is not desirable to even try." Recovery from autism may not be desirable for everyone. But it is possible for many. And for the thousands of loving parents that I have met all over America, it is the most joyous, desirable thing in the universe.

" I do not believe there is anything we can do to make him better, and it is not desirable to even try."

Barbara - could you show me where Kristina or Dora say you shouldn't make one's child better?

As is typical, Barbara, David Kirby doesn't check his facts nor has he the least bit interest in your child or autism.  He is paid by JB Handley.  At one point in the 80's, David claimed that the CIA released the AIDS virus to kill homosexuals.  David was part of the gay rights organization, ACT UP.  However, today, AIDS has been proven not to have been started by the CIA.  His new pay masters, Generation Rescue, are paying him to pedal new consipiracy theories.  Mr. Kirby has a long history of writing about various conspiracies and serving as a PR hack.
Please, stop this argument and fight for civil protections, inclusion, educational supports, opportunity and independence of autistic folks.  Please step back away from this distraction which is hurting you.    

Posting a topic titled "10 Autism Controversies" and inviting all and sundry to comment may have been a bad idea. It inevitably attracted jerks like John Best, who seem to attracted to controversies like a fly to dung. His presence makes this feel like a toxic place to me.

I'm an adult Aspie. His kind would have happily amputated a vital part of my personality so as to "cure" me. I don't wish to subject myself to the pain of sharing a space with him.

   The very controversies within the blog and are seen here are what I call 'The Wedge Effect'.  It is what has made the Lobby for those with A.S.D.'s an easy one to beat up on.  If we have no unity regardless of our beliefs,  we stand in separated groups that all are pushing on their agenda - but some..very few..are open to the universal belief that we all need supports. 

As I have known many for several years - we all are very different even within the same set of beliefs..which I also think is a rare thing to find - another parent or individual that thinks exactly as you think..we all have differences in opinion.

There are several very debatable and some are very highly scrutinized by some.  I believe that ALL of us must realize that everyone is different.  Adult on the spectrum would like to have a say in all that goes on regarding politics, etc. in A.S.D.'s - please realize that even parents and many professional would like the very same.. the only way it happens is if we stand up and speak - there are literally tens of millions of people that have a family member - a grandchild, neice, nephew, child even..on the Spectrum.  So we are always going to think in different ways but we don't have to be at each others throat about it.

I found that the more I listen to one that keeps at it with their agenda the less I am able to listen to the entire crowd.  I did not create and now propose The Autism Reform Act of 2009 to cover any what my own needs are for my child - they are already covered.  This is about the kids growing up and the adults that need services - if this is about who can insult each other more and call names... that only shows that we are a weak Lobby.

In regards to Advocates - Before those that have never even had an advocate or are forming beliefs based on what others say:  YOU Do not know me... do not judge me.  Is it not known what the word even means.. from the root word advocata meaning attorney.  Which is why in Due Process hearings we still should be calling ourselves 'lay advocates' for our own protectino now. We have an individual in Jail in AZ. right now targeted for getting a state to finally comply - 5 open Due Process cases with parents needing immediate help and everyone afraid to do so.  Advocates that 'make a living' from doing so I am somewhat suspect of.  If they get their expenses paid for they are doing it at no actual cost only hard cost.  If they sit by teleconference and do an IEP for 3 hours in another state after reviewing documents and interviewing the parent(s) ..then follow up on this and have no fee schedule (like many of us) and do not charge parents - I have had parents give to us but in small amounts.  If we have expenses and I can't afford to cover them 'this time' we might ask for them to be covered.  So as an Advocate over the past 12.5 years I feel as if we are 'judged' before we even face the hearing officer.  How many of you that make these judgements spend your time Advocating.. which in fact in Advocating for parents/child you either Advocate for the wants of the parent or you don't do it.  It's not about an Advocates personal belief, it's about what parents may want for their child and a true Advocate will go after that regardless of the consequences - I salute you Ray and hope you are vindicated soon.   I do know that many cases I have worked on involved the incomplete work of an attorney that no longer would take the case due to no more parental funds, or sometimes a local Advocate that actually charged to do it.
If it's from the heart gas money doesn't matter, my time is their time and until the clock runs out of numbers and sleep is necessary - I will continue.  Some parents want a treatment ( I prefer to stay away from the word cure ), whether I agree or disagree with that treatment is not the job of an Advocate - it's to get the parent/child what is requested and generally it's already been requested and is being asked for a 2nd or 3rd time and thats when the parent calls in help.  Once again.. to those that want to put down advocacy .. What are you 'putting up' ?
If you don't promote Advocacy (which in my belief includes teaching the parent along the way.. we have a few hundred thousand young children and many with new diagnosis.. parents need to learn to 'fight the system' to get their needs if that is necessay)...As I stated.. If you don't promote Advocacy what do you promote ?  If you have never sat in the chair of an Advocate in a Due Process for 10 hours a day for a week..and did it because that's where your heart is..and paid with your own funds to fly to the next pro bono job.... if you've never actually done this and had to be there in person to present a parents requests in an IEP or did a few thousand by teleconference.. how can you possibly judge  ?  It's not our job to judge people anyway.

Regarding the comment on the blog about recovery not being desireable.. once again that is an Individual groups point of view. If that is your point of view consider the parents of the 3 yr. old just diagnosed.  If we are considerate of each other we may be able to at least promote legislation in unison and use the power of numbers.  The Autism Reform Act of 2009 may not be acceptable to all - actually I KNOW already it is not.  But each area is very acceptable to our divided Sectors.  We can continue these heated debates or we can agree to disagree and get the Reform that is needed.

Whether a parent emails me or calls me and needs help getting more speech therapy, needs O.T.S.I., wants to do Floortime, needs transitional help, reports to me that there are abuses going on (this happens too much), wants and in home ABA program for thier young child, has had a district not comply or suddenly change and IEP and can not afford an attorney and needs help,  an adult can't get SSI and feels he's discriminated against, an adult feels discriminated against at workplace due to disability, wants to file a 'complaint' and needs direction, a parent wants to get coverage for therapies not covered and needs someone to speak for them, a child is missing and a Search and Rescue is done, wants to do a therapy because their child has a blood test confirming a high level of toxins... whatever the parent wants is what an Advocate should do.

As an Advocate if you don't believe in Advocating for that individual then you should not,  but one thing is for sure - you can knock down Advocacy all day long but what you are left with is .... Nothing.   Educational Advocacy is mainly what I do, but the needs of adults and as well transitional needs are becoming more prominent in requests for Advocacy. The need for coverage of therapies is a large issue,  I can understand not liking someone but the personal on blog attacks about people we don't know ...we need to stop.
Whether I agree or not on cause and cure..doesn't matter.  What I do know is that my son did have a very elevated Mercury and Aluminum count.  Using more of a homeopathic approached actually triggered his system into cleaning himself out.  I didn't need many of the therapies that are in question - but I do not think that I as an Advocate should not help someone get any type of therapy they need.  Generally it's more Speech/Language and the other 'basics',  but as we gain more knowledge more therapies emerge and are not covered by insurances. Just as I would and have helped those on the spectrum in regards to S.S.I. (It is part of the Autism Reform Act),  I wil help a parent trying to get coverage.  It's all in a day's work for what I consider an 'Advocate'.  We may be wrong sometimes, but admitting it, moving on and forward and continuing to have that united goal of Total Awareness of the needs of those on the Spectrum - I think it's what we all should continue to build upon.
Michael E. Robinson, Sr.    The Office of Advocacy for Autistic Children/Adults

Although I personally am not in full agreement with these writings on the " 10 " , It is an opinion (and this is a blog not related to any team other then Lobbyists and the change.org 'team'), and everyone is entitled to their opinion.  I would agree as well that the viewpoint appears to be coming from one 'sector' of the many groups that need to unite for the common purpose of Reform for all of us.
In my last comment I did not include that I do agree strongly with self advocacy...as it not only is directed towards those on the spectrum that advocate for themselves - it's also directed towards parents to promote their ability to advocate successfully for thier children.  As many parents can not afford attorneys they do not fight something that is not right without facing attorneys on the other side - this leads to a higher 'loss' ratio.  If proposed legislation is passed I would like to do a series of video's on youtube to explain the differet aspects of due process and how to do it basically - but I can't say much more then that without my neighbor Dwayne 'The Dog' Bounty Hunter coming after me  ( I like in Hawai'i )!!  Advocacy and self Advocacy need to be allowed as Due Process IN My own personal opinion only is an Administrative Hearing.
I think that more teen children on the spectrum should be allowed to appear in hearings and testify...even preteens.
Why not ask a child directly ?  I could go on all day about these types of things but I do believe that we all should keep an open mind about what individuals are saying and some just need to
' wash their e-mouth out with soap ' !!   Like Rodney King said " Can't we all just get along " "   Wait, I think he went to jail after that but anyway - Let's try to remember that if we all can team up we can see Reform that will effect all - not taking away anything but allowing doors to open and sounding off on some items that need Reform - from our young kids to our adults and the people that love them... we all must unite and disgard whatever dislike their is about this belief or that belief.  Advocacy and Self Advocacy must be allowed in Due Process,
Kids shouln't be in Time Out Rooms, Oversight by a committee of professionals, Adults on the Spectrum, and Parents needs to be formed and an Office fo Compliance to the Reform Act must be formed.  Those that are on long waiting lists or have been turned down and are awaiting appeal need equal treatment for all ASD's,
We need non biased hearing officers, protection and advocacy funded, we need services for adults on the spectrum available,
parents shouldn't be losing their home to foreclosure to pay for a treatment ordered by their physician,  adults shouldn't have to wait on long lists for Medicaid Waivers,  We have so many concerns - we need to unite and forget our difference of opinion - we have the possibility of being on extremely large lobby.
Michael E. Robinson, Sr. The Office of Advocacy for Autistic Children

@Michael Robinson,Indeed, I think that there is more that unites us, though perhaps we haven't all quite figured out how to speak to this. I've written more about what advocacy means to my family in my Primer:
http://autism.change.org/about/primer?section=primer2

Thank you very much.

AS you stated Kristina:
"Autism advocacy starts with autistic persons and understanding what their needs are, and why those who are not autistic need them; how we all need each other, and how we need to exist, to work and live, together in the community. "Within our large united community we have several viewpoints that many times 'collide' with each other.  I believe that if we embrace unity regardless of beliefs in regards to cause and cure, and work together we can make a change.  Every child is so different and all have their own individual needs which is one reason why I do not give preference to any modalities of Education or Treatments and Therapies.  To me as an Advocate for others my first responsibility is to gain the 'item' whatever it may be .. a service, therapy, etc..  that the parents or adult wants.   Many times I do believe that our higher functioning population should be allowed to have more of a 'say' in regards to I.E.P.'s.  My son is non verbal but still has his say through a very high tech speech device that speaks for him - he needs no assistance to form sentences quickly with it.  I think that all should keep an open mind and consider the needs of not only their child or themselves but the entire community and the needs of the individuals on the Spectrum.  As it is a Spectrum there are definately different needs, therapies, Educational approaches, etc. that all work a little differently with each individual.To my family Autism means love, because that's the biggest thing Michael has taught us - unconditional love.  I want the most for him but he has his own personality that I would never want to change.   That's my own personal feeling - when he was  10 years younger I would 'fight' for the programs he needed hoping for a 'change' in him which didn't need to happen...the change needed to be within myself.  Now, the Change must be within the entire system from Education to Insurance Coverage to Stopping abuses and so on.  We all need to unite and remember that there is always someone else that may need the treatment or therapy that you or I may disagree with - It is still the right of that individual to do all they can for their child of course within limits of safety.  We all want the best for our kids regardless of their age.Take Care,Michael E. Robinson, Sr.  The Office of Advocacy for Autistic ChidlrenThose that want a copy of the 'rough draft' of the final Autism Reform Act of 2009 email me and you'll get it.. or you'll see it posted on a site soon as it is ready.  Thank you for your support and input.

Ref Controversy 6.I am conserned not to see any refernces or discussions on the possible effects of weak electomagetric radiation (from mobile phones and WiFi) on human cells ability (inability) to dispose of heavy metals such as Mercury. Research done by Tamara J. Mariea and George L. Carlo and further supported by earlier work by Amy Holmes suggest that cell membranes under the influence of such radition tend to close and keep heavy metals in the cells.
The strong growth in the deployment of low energy radiation systems in our environment could certainly explain the "epidemic". Quite a dilema!!

RE: Cures


it's simple- HFA'ers don't need or want a cure, but that is not the case with those at the other end...

like most things in life- its a matter of degree

Scott,
There are some autistics that do want a cure, some of those are what you call HFA'ers.  There some autistics you would label LFA'ers that don't want a cure, two come to mind, Amanda Baggs featured on CNN and Tito Mukhopadhyay.  You can find even Autism Speaks acknowledge Tito's "severe" autism here : http://www.autismspeaks.org/tito.php

I'm not sure why Autism Speaks chose to include Tito on their website since he doesn't support the goals of Autism Speaks, but none-the-less he is there.  My guess is that the founder of Cure Autism Now wanted him on the website to promote a book that she collaborated with Tito on.  It's interesting to note that Tito is not happy with the founder of Cure Autism Now because he feels he was tricked and misrepresented in the book.
It's difficult to put people in a "box".  But I think most people, autistic or otherwise, like the idea of assistance but acceptance at the same time.

@Scott Singleton, which environmental causes, or rather which theories/hypotheses of environmental causes, are you referring to?
Regard studies refuting a vaccine/mercury link to autism, here is a post that I wrote:
http://www.autismvox.com/thimerasol-exposure-declines-autism-rates-increase/

You can also find numerous posts about the environment and autism that I wrote here; I will most likely be referring to some of these.
http://www.autismvox.com/category/environment/

@Michael Robinson, Thanks for your further comments. I had some questions concerning the "Autism Reform Act," as noted on a post I wrote recently on Autism Vox; I was wondering what your responses to my concerns are.  Thank you.
http://www.autismvox.com/autism-legislation-what-should-it-include/

Dora and Kristina, as counter-intuitive as this might sound, I'm not sure deleting comments is in your best interests. It may make your blog more work, but the fact that the science is firmly on your side really nullifies a lot of the trolling that the likes of John Best do. Deleting comments only fuels their persecution complex, and can do as much damage as good, because they will cite it as a crucial dishonesty on your behalf.

Let them rant. Stay calm. Refute their claims firmly when it is within your power. If they are too much trouble, you might want to get a medical specialist on autism to refute them pro bono. There are a lot of scientists blogging.

"Recovery from autism is neither possible, nor desirable."

I disagree profoundly with this statement. My child is recovered as a result of intensive ABA. I have met several other children who are indistinguishable from their peers as a result of ABA, biomedical interventions or combinations of the two.

No doubt people on this board will tell me that, despite his normal functioning, my child is still "autistic inside", that "his autistic self remains untouched." I will tell you preemptively that I find that horribly offensive. He is HIMSELF inside - the same unique person he always was, a loving soul who could never have developed the relationships or had the particular successes he has enjoyed had we not sought to teach him skills that helped him overcome the symptoms of autism - the stereotypy, the profound language problems, the difficulties with abstract thinking, etc.

These interventions allowed him to fully express that self and fully engage in the life he wants. He sees himself as a loyal friend, a wise brother, a party-thrower, a physics geek, a musician, a joker, a sprinter and a skier, who had some great teachers when he was little - not autistic. He doesn't seem autistic to his family, friends, teachers, or neuropsych evaluator. But some people on the internet know better! Okay, whatever.

We are lucky and we know it. When we began doing ABA, we became close to other ABA families who worked as hard as we did in hopes of recovery, with varying results. Some of the children are still disabled, some profoundly. We worry about them (Because how could we not? We all lived for years in the same boat) Are these kids getting effective support in their teenage years? What's with the schools that refuse outside placements but still allow the teasing and taunting? What will happen when they turn 22 and age out of the educational system?

Now that we aren't spending all of our time and the equivalent of a second mortgage on helping our son overcome his disabilities, we actually have some time and money to spare supporting local schools and organizations that will help. We raise money. I am working full time in a job that quite incidently gives me the ear of state HHS officials. We - finally - are in a position to give back.

However, I would *never* in a million years lend my support to organizations or movements that seek to deny that recovery is possible and redefine my child without ever having met him.

Like most people, I support organizations that share my view - that all kids deserve interventions that may enable recovery, because some kids *do* recover. And that some kids do not recover and deserve ongoing supports to maximize their potential and quality of life.

In case it's not obvious, I don't think you help your case for education and support and treating people as individuals by trying to explain away the existance of individuals and their families who might have been some of your greatest supporters.

@Nora Johnson, thanks much for writing here about your son.  We found that the over-emphasis on recovery by our first ABA providers (the Lovaas agency) seemed to interfered with teaching Charlie. We've continued to consider ABA an important part of Charlie's education (he is in an ABA classroom here in New Jersey)----I've outlined more of our ABA experience here in an article I wrote for the Lovaas agency's "Meeting Point" newsletter.
http://www.lovaas.com/meetingpoint-2007-06-feature-02.php

I also have explained more on "Once Upon a Time, I Tried to Recover My Son From Autism."
http://autism.change.org/blog/view/once_upon_a_time_i_tried_to_recover_my_son_from_autism

Every child's different (I think we can all agree on that......) and I've had some interesting conversations with some who said they were considered "recovered" when they were children, and have some differing thoughts about this now.  
Thanks very much again and thanks again for writing about your son.

My experience with autistic persons dates back to 1981. Very few people knew much at all at that time. There was much misunderstanding, misdiagnosis, poor use of terminology. I hope this site can offer better starting points than the Ten Controversies. It seems a rather pius, establishment oriented apologia. It seems that we know so much more than we did before and yet nothing at all.

Nora said:"No doubt people on this board will tell me that, despite his normal functioning, my child is still "autistic inside", that "his autistic self remains untouched." I will tell you preemptively that I find that horribly offensive. He is HIMSELF inside - the same unique person he always was, a loving soul who could never have developed the relationships or had the particular successes he has enjoyed had we not sought to teach him skills that helped him overcome the symptoms of autism - the stereotypy, the profound language problems, the difficulties with abstract thinking, etc. 

These interventions allowed him to fully express that self and fully engage in the life he wants. He sees himself as a loyal friend, a wise brother, a party-thrower, a physics geek, a musician, a joker, a sprinter and a skier, who had some great teachers when he was little - not autistic. He doesn't seem autistic to his family, friends, teachers, or neuropsych evaluator. But some people on the internet know better! Okay, whatever."
Sounds like you've said this before in other places and people have said your son is still autistic.  Why does he have a neuropsych evaluator?  I haven't seen you post here before so I don't know where such hatred and anger comes from.  I do hope you can recover from such hostility.
I'm autistic and it hasn't precluded me from being lots of good things.  I'm sorry that the existence of people like me is so repugnant to you. 
"establishment oriented apologia" from Bob Marsh.
I can't say as I even know what that means.  But, non-autistics have a way of always telling autistic people what to think so I hope you'll tell me what is it you would like to have us think.

The day I stopped trying to fix my son & accepted him for who he was, is the day our lives changed. I studied all that I could about Sensory issues & why the world seemed so painful to him. This was a huge issue when he was younger. I chose to make the world understand him & provide him the support he needed to function in this world. I chose to advocate for him by educating others. I thought when people know better they do better.......(wont open that can of worms).
The funny thing is the more I learned about my son the more I learned about me. I seem to have some of the same issues. My son has made me a better person!

@Bob Marsh,Might you clarify what you mean by a "pious, establishment oriented apologia"? Have you been a teach of autistic individuals?  Thank you.

I want to point out that this list of ten isn't THE list, but a start.

"Dora and Kristina have identified ten topics that have sparked intense and fervent exchanges. We will be addressing additional controversies regularly in the Autism blog."

The concept of spectrum is worthy of a ten-list all of its own.  And then the concept of individuals moving both directions on the spectrum is another.

Kristina and Dora, this is a great start.

Thanks to Kristina Chew and Dora Rayburn for their outline of the issues. It’s so refreshing to read such thoughtful and well-informed contributions.

I strongly agree that too much media attention is giving to “recovery” stories. Just scan the recent autism memoirs: virtually all are cure stories. Most of them present a highly misleading version of the daily lives of autistic people and their families, and, frankly of the likely outcome of treatments. But to say that recovery is not possible or desirable overstates the case. As the father of a nineteen-year-old young man with autism who is considered “low-functioning,” I know that most parents do all within their powers to educate, accommodate our loved ones’ needs, and help them alleviate their difficulties. If teaching a non-verbal child to communicate successfully, helping him to mitigate his/her sensory problems and training him/her to respond to social cues is helping the person “recover,” then who is not in favor of it? But what about giving the person a medication? Putting him/her on a restrictive diet? Using auditory training? Avoiding vaccines because of anti-vaccine hysteria?

Yes, focusing too much on recovery precludes accepting an autistic person for who he/she really is: there comes a time when parents must accept their child as he/she is and stop holding out unrealistic expectations. However, there is a difference between mitigation and recovery, and to issue a blanket statement that recovery isn’t possible or desirable may provide a pretext to dismiss autistics (as in the old, dark days) and fail to treat their separate maladies. It can also sound like sour grapes for families of those autistic people who aren’t “recovered.”

Re controversy three: this is merely the social constructionist model of disability that dominates academic disability studies. In buying this model wholesale the disability community (including academic disability studies) has failed to come to terms with the fact of bodily impairment. Not all of the difficulties involved in autism are produced by an environment that fails to accommodate autistic people. The social constructionist model risks is too dismissive of the “medical model” and may provide a pretext for not using potentially helpful medical therapies.

On the “epidemic,” read Roy Richard Grinker’s book Unstrange Minds, where he marshals  persuasive arguments that there is not, in fact, an autism epidemic.

The question of functioning levels is integrally related to the question of who represents autistic persons. But if it’s true that “if you’ve met one autistic person, then you’ve met one autistic person,” then how is it also true that persons on the highest end of the spectrum can speak for persons with far different needs and abilities? Are the views of a college-attending, blog-keeping, self-advocating autistic person automatically more valid than, say, those of a parent or sibling who actually knows and loves one of those “low-functioning” persons who can’t speak or successfully use a communication device?

We should keep in mind that, just as the notion of functioning levels is “amorphous,” so is autism itself. Anyone who studies the literature and history of autism knows that the autism diagnosis is nebulous and constantly changing (which is one reason for the “epidemic”). The spectrum concept is designed to honor differences, but it can instead end up reifying “autism” (thus giving the last word to those same medical professionals that the social-contructionist model dismisses) and minimizing substantial differences between those on different ends of the “spectrum.”

One thing we can all agree on is the need for far more and far better accommodations for adults with autism. If you read the recent book Families of Adults with Autism, you’ll get a sobering look at the current state of life for many autistic adults. The drastic widening of the diagnosis means that an enormous bubble of those with “autism” will be reaching adulthood at the same time. What will happen to these folks? Rather than consuming ourselves with divisive controversies about cures, advocacy and the politics of representation, we should work together to create better employment opportunities, living skills and residential choices for autistic adults.

@Matty Smith, thanks for that point-----there were some reasons related to the comment policy for Change.org that resulted in some comments being removed. If you'd like to discuss this a bit more, please let me know.  Said commenter has a blog that has included posts in reference to me.

@Liz Ditz, the list was indeed meant as a start-----a hard time only "choosing" 10!

FORGET ABOUT A CURE?Are you NUTS? Who in their right mind would say such a thing? I was told the same thing many times, but I continued the research on my own AND I FOUND ANSWERS. There is a reason for these elevated rates of Autism. Just like there are answers for what doctors called "Unexplained Diseases", like most of the, so-called 'autoimmune' diseases. There is a explanation for these diseases and they are caused by the usual problems, pathogens, nutritional deficits, drugs, accidents and toxic exposures (chemicals, fumes, molds, etc.). I hear how genetics are implicated in a lot of diseases, which makes only partial sense to me. Weaknesses in body systems due to genetics obviously complicates illnesses, but in reality saying genetics causes diseases is a way of dismissing the issue of what causes something to happen. SOMETHING had to HIT the bad gene to cause it to miss-fire some process in the body... therefore, in reality, genes do not CAUSE disease. Our healthcare system likes to pretend that all the thousands of drugs, chemicals and pollutants in our environment (including molds and fungus), don't cause problems (like the mercury in Thimerasol that is used as a preservative in vaccines, especially multi-disease vaccines). Just ask any soldier who has been in a war zone and has tried to get help with problems caused by the HUGE amount of chemicals they are injected with, worked with, lived around,or shot etc. I spent 15 years being diagnosed with a number of these "unexplained diseases" and treated like an experiment with all the different drugs tried on me that mostly just made matters much worse. Then, only to be told that there is no cure and the sooner I stopped looking for a cure and start ACCEPTING my limitations the better off I would be. Well, I did not give up and by my own research I figured out I must have Lyme disease. I got tested and I was RIGHT! After 15 years of being so sick I was unable to function, finally I am GETTING WELL. I am even looking for a job, badly needed to shore up my finances which were wrecked by 15 years of all my savings spent on misdiagnosis. You know who finally helped me? An ALTERNATIVE DOCTOR. One who does not deal with insurance companies. Hard to pay for, but much, much less expensive than the ALLOPATHIC way. People with autism need to pursue alternative doctors. Especially important is to be tested (correctly by GENETEC) for Lyme disease. Just do a search on google for "autism +lyme" and you will come up with hundreds of hits. The doctor who wrote the book on Lyme disease that sa helped me has now written a book on Lyme and Autism: The Lyme-Autism Connection: Unveiling the Shocking Link Between Lyme Disease and Childhood Developmental Disorders by Tami Duncan, Bryan Rosner, and Robert Bransfield MD. Then go to this web site and listen to some videos at this Lyme & Autism Symposium:http://www.lymebook.com/spring-2008-lia-conference. There is ALWAYS a cure. Sometimes it is death but until then don't stop looking for that cure because OUR HEALTHCARE SYSTEM IS FAR FROM BEING GOOD ENOUGH TO SAY STOP LOOKING! (Rated #37 in rank among the top 44 Industrialized Countries in the world - our infant morality rate is awful and so is our life expectancy rate, i.e., going down every year.) Something is very wrong with our healthcare system and it is not all related to money. Could it be that our doctors are close-minded? Even with all the research that is done in this country, our doctors don't have time to read it, or are too caught up in their specialty to care about most of it (another identified problem with our system is over-specialization and not enough 'family' practitioners). The worst thing is they get most of their information from the Drug Representative! Never mind that more people are killed in this country by drugs than cancer!

@Wilma, Thanks for the link and I have read some about Lyme diseases and autism. As noted, I think it's very important to emphasize helping the person in front of us, in front of you; for me, that has meant a focus on teaching and educating my son.  It's slow progress, perhaps, but the learning does happen.

@Mark Osteen,First, greetings, and thanks for a provocative comment that will leave me thinking for a while, and probably adding more comments). You wrote

 "If teaching a non-verbal child to communicate successfully, helping him to mitigate his/her sensory problems and training him/her to respond to social cues is helping the person “recover,” then who is not in favor of it? But what about giving the person a medication? Putting him/her on a restrictive diet? Using auditory training? Avoiding vaccines because of anti-vaccine hysteria? "

Two thoughts: Perhaps it could be said that there's a range or "spectrum" of what is meant by recovery.  And, perhaps, this whole question of recovery shows the limitations of viewing autism as a disease and illness, rather than as a disability.
Can only second your final sentence----we wanted to get these controversies out there and keep the conversation going, and moving on.

@Wilma.

"I hear how genetics are implicated in a lot of diseases, which makes only partial sense to me. Weaknesses in body systems due to genetics obviously complicates illnesses, but in reality saying genetics causes diseases is a way of dismissing the issue of what causes something to happen. SOMETHING had to HIT the bad gene to cause it to miss-fire some process in the body... therefore, in reality, genes do not CAUSE disease."

Hi Wilma. Genes are complicated, and genes are not really a 'blueprint' for any perfect human, they are closer to a vague recipe. Some genetic combinations do cause illnesses without needing to 'miss-fire', they simply produce non-beneficial phenotype (the physical manifestation of a gene). Autism aside, sickle-cell anaemia and lactose intolerance are both examples of non-beneficial phenotypes that result from genetics. Not from genes 'miss-firing', mind you, but just because of the fact that genes don't have intent, and our genetic structure is not altogether 'naturally' beneficial. Genes just, for better or worse, bestow the framework for our structure.

People need to be very careful about pursing alternative doctors, especially if they do not have an exceptionally good general knowledge of medical science. A lot of alternative doctors offer non-treatments like chelation therapy when there is really no good science linking metal toxicity to autism. Such alternative doctors make a lot of money preying on worried parents with no good understanding of science, and misteaching (in more charitable cases misunderstanding) basic science for their own monetary gain. Drugs can harm or they can hinder, and orthodox doctors can be good or bad. But alternative doctors are, in the largest majority, not real scientists, and often offer dangerous non-treatments.

In the case of autism, there really is not any evidence that it needs curing, just as other genetic (or partially genetic) conditions like down's syndrome or homosexuality do not need curing. Autistic people are interesting and beautiful in their own right, and what they need most is support. We need to learn to live with difference, with variety, and to support those people with different understandings and needs to our own. That does not mean dealing with autism will ever be easy. My brother-in-law is autistic, in his twenties, and quite a handful (lately he has been punching holes in the wall of his flat), but he is also and interesting and amazingly talented individual, with a stunning memory (especially for ABBA trivia).

If you wish to look for a cure, you may. I do not feel my brother-in-law needs 'curing' of his autism any more than I feel he needs curing of his homosexuality. Both are crucial parts of his identity, and however difficult they might make things, I plan to be there for him. I hope we can all be support for the autistic people around us.

I agree with much of what both Mark and Wilma have added to this thread (and want to appreciate Kristina for her attitude of wanting "to get these controversies out there and keep the conversation going, and moving on").  Both 'camps', if you will, have something to offer to the other, with different perspectives on the same object, for a more holistic look at it.  Personally, I have learned here to widen my perspective.
But I think I will always be a preventionist at heart.  A little story as to what I mean.  This was told in an editorial in the old Prevention magazine of years ago, when the editor described his philosophy.  A man was walking along a river when he heard a cry for help coming from it.  He looked over and saw a child, caught in the flow and struggling to keep its head above water, from the sound of the cry about to drown.  He quickly took his shoes off and jumped in and swam over, and dragged it to safety on the shore.  Just then he heard another cry for help, from upriver: another child in the same circumstances.  He dove back in and swam out to this child and, even though his strength was faltering, he managed to drag it to safety on the shore as well.  Whereupon, catching his breath, he heard another cry for help...Just then another adult came walking by on the path.  He said to the person: "You dive in, and try to save that child; while I go upriver and find the s.o.b. who's throwing them in."
One may think that a particular child doesn't need 'saving'.  But let's look at the context.  And know that there's room for us all in this venture, folks.  We just have different places to concentrate on, and be of service in.     

Kristina and Dora, thank you so much for your thoughtful and, to my mind, well-balanced and carefully-expressed thoughts on the issues. I shall add my comments from some of the material I've included in my thesis. This will be in two parts, otherwise it will be so long that it'll bore you rigid! Here is the first part:

There are three main categories of intervention: those which are primarily home-based, those which are primarily school-based, and those which can work in both settings. Many of the interventions have been devised in the USA for pre-school children and arise from a cultural and social imperative which differs considerably from UK societal patterns. In the USA, in the absence of a national health service, a child diagnosed with autism can have recourse to a number of commercially-competing intervention strategies paid for by health insurance. This could, theoretically, bias the findings of empirical research into the strategies, in an effort to ‘prove’ that one intervention is more successful than another. This question of bias will be raised in my examination of the competing systems. Another factor influencing the USA interventions is that some of these systems are based on recovery promises.

While UK national voluntary support organisations for autism do not see the aim of the intervention as ‘cure’, the USA perception of autism is different, and one of the leading voluntary organisations in the USA, backed by some eminent researchers, is named Cure Autism Now. There is a public interest in finding a 'cure' for autism, as well as discovering a possible environmental cause, and a widespread lay belief that this is possible. Gray discovered that a major barrier between staff at a state centre for autism and the parents of the children, was a parental belief in a cure (1993), while Nickel, who reiterated the findings that parents are anxious to find a cure and are attracted to controversial treatments, suggests that this may be a natural stage in coming to terms with the diagnosis of developmental disorder (1996). Tharpe names Auditory Integration Therapy, an unproven intervention for autism as a ‘magical mystery cure’ (1999). Some of the USA research findings therefore may make claims that recovery has been achieved by some of the research subjects, a questionable result. The UK lay and expert consensus appears to be in line with that of Howlin who has said that there is very little evidence for a ‘cure’ but that intervention strategies may play ‘a significant role in enhancing future functioning in later life’ (1997).

We should, therefore take into account the commercial bias there may be in the scientific findings of those who developed various intervention strategies. We should also take into account, in examining the empirical basis of many of the research studies, the practical limitations imposed on research in this field, the most obvious of which is that we have no yardstick by which to judge the unmediated progress of a pervasive developmental condition. Since autism research is relatively young (Kanner, 1943; Asperger, 1944) there are few reports of the prognosis of autism in a typically-developing autistic child who has no social or educational or medical interventions. We have partial reports from follow-up studies by both Kanner and Asperger, we have anecdotal reportage, and we have first person accounts from able autistics which have added to the epistemology of autism. But there can be, for ethical reasons, no control studies which deprive able autistic children of all variable factors: parental attention, peer support, educational input, and statutory service intervention, in order to establish a base-line which has never and can never be established. The question ‘What is the developmental trajectory of an able autistic child without intervention and with only the support given to a child with a typically-developing profile?’ is unanswerable.

This next section refers to those originally described by Kanner, and therefore, who may be considered to be of (excuse me for hating this term!) 'low-functioning' (it's pained me to even write that!

So here we go for part two of a social-historical light on the subject of autism:

In the introductory remarks to this chapter I wrote:

The question ‘What is the developmental trajectory of an able autistic child without intervention and with only the support given to a child with a typically-developing profile?’ is unanswerable.

However, there is a useful comparator, albeit historical, which might shed some light on that question, and could be said to work as a baseline for intervention studies. In 1971 and 1972, Leo Kanner, completed two follow-ups of the children he had observed in his Johns Hopkins clinic in the 1930s and 1940s, which had been the basis of his diagnosis  of ‘autistic disturbances of affective contact’ (1943). The first of these, Follow-Up Study of Eleven Children Originally Reported in 1943, (1971) brings to date the case histories of the children originally studied. Two of the children were impossible to trace. A third boy, John F, who had since the first study developed epilepsy, died suddenly in institutional care in 1966. The remaining eight, and what is known about the two who disappeared, and about John F, are discussed in detail, in a narrative case-study manner.

Of the eight, one was originally seen in an institutional care setting (Virginia S., at 11, the oldest of the original subjects) and one, Charles N., was placed in a special school a few days after the original appointment, and from there, within months, was transferred to institutional care, where he received electro-convulsive therapy and began to deteriorate (Eisenberg, L. 1956). It is therefore not surprising that these two were still in institutions in 1971. Another three, Elaine C., Barbara K, and Richard M, were also institutionalised by 1971. However, three of the eight found a good or very good degree of sufficiency within the community. One, Herbert B. was, in childhood, and in 1971, non-verbal. He had been fostered to a farming family, and had learned many farming and practical skills. When the farmer died and his wife opened a nursing home for the elderly, Herbert worked at the nursing home, preparing the trays and taking the elderly ladies for walks. Frederick W. who was echolalic at 5 years old, and was enrolled in the Devereux Schools, a special school in Pennsylvania whose founder, Helena Devereux, had particularly enlightened views about disability, regarding each child as an individual with potential to develop into a well-rounded adult. He remained to the age of 27 at Devereux, then joined his parents on a year’s secondment to Puerto Rico, before returning to live in North Carolina with his parents and entering a sheltered Workshop, where his skills and dedication were noted so strongly that he was appointed to an office job at the National Air Pollution Administration. The most verbal of the original 11, Donald T, was fostered to a farm where the owners indulged his interest in numbers by giving him practical tasks of mathematics, and sent him to the local school. After returning home when he was 14, he enrolled in mainstream high school, went on the university where he obtained a degree in French, and was in 1971 working in a bank with a wide range of social interests.

These children were the first to be diagnosed with classic ‘Kanner’s’ autism, in an age when they were classified as psychotic, and when children with psychoses were routinely admitted to institutions. Because the numbers are so small, it is perhaps unfair to point out that despite appearances to the contrary in childhood, and without useful intervention, only half of them had reached the ages of between 30 and 40 in institutions, and half of the cohort was leading a productive life.

In the following year, Kanner published How far can autistic children go in matters of social adaptation? in which he re-examined and followed-up all the best outcome cases he had seen before 1953 (1972). Out of a total cohort of 96, he selected 9 to discuss, initially pointing out that in the previous year he had already written about two of the best outcome cases, Frederick W. and Donald T. He did not include Herbert B. Another of the best outcome group, an outstanding university student of mathematical physics, had been killed in a street accident and therefore could not be included in the case notes. But if we include him, and another very promising student who disappeared, there is a total of 13 ‘best outcome’ cases from a cohort of 96. Included in these are three with university degrees (including one with a post-graduate degree) one about to graduate, one who died about to graduate and one ‘lost track’ at university. Three further subjects finished junior college, one graduated from high school and one left in the 11th grade. All were gainfully employed, or expected to be. It is important to remember that none of these subjects had any therapeutic intervention. Kanner’s case notes give us the answer to the question posed about the developmental trajectory of classic autism without intervention: where no therapy was offered, over 6% of classically autistic children could progress successfully to graduate status, 40 years ago. In 1970, only 10% of the US population was a University graduate (US Census). Almost 15% of Kanner’s autistics, without early intervention, could enter mainstream school without classroom aides, in an era in which inclusion was not a part of the educational agenda, and could find an adult quality of life in which their skills were appreciated, and/or employed.

Kanner says,

It must be kept in mind that our ‘emergers’ grew up in the days before the introduction of therapeutic techniques especially intended to remedy the autistic illness, be they based on circumscribed psychotherapeutic, psycho-pharmacological, or behaviorist orientation. Would any of these have in any way altered the outlook for our 96 children? Will any of those increase the ratio of ‘emergers’ in the future? What can we make of the fact, documented in this study, that almost 11 to 12 percent ‘got there’ without any of those techniques?


and he discusses some of the facts which some of us, sometimes, forget about developmental conditions - they change over time in  fluid co-dependence on various environmental factors, and in the natural progression of reaching adolescence:

They made the compromise of being, yet not appearing, alone and discovered means of interaction by joining groups in which they could make use of their preoccupations, previously inured in self-limited stereotypies, as shared ‘hobbies’ in the company of others. In the club to which they ‘belonged’, they received – and enjoyed – the recognition earned by detailed knowledge they had stored up in years of obsessive rumination of specific topics….Life among people thus lost its former menacing aspects. Nobody had shoved them forcibly through a gate which others had tried to unlock for them; it was they who, at first timidly and experimentally, then more resolutely, paved their way to it and walked through.


That second quotation from Kanner, is a brilliant and yet pragmatic piece of writing, which always makes me cry.

Do we in the UK have a bad smell?

I notice that no one wants to reply to my very pertinent comments about Kanner's original research, which demonstrates the historical situation of his work, set against current, slightly less validated, 'findings'.This is really important.

Is there a reason for this research neglect of what Kanner actually said?

I'd really like to know. It's bothering me.

Barbara Jacobs,
I'll comment for ya.  I didn't originally comment because much of what you wrote is not new to me.  I have read all of Kanner's papers and his lectures that have been printed.  In addition, I have read many of the news stories where Kanner was the subject.  The New York Times has an archive which you can search for more insight.
The first part of what you printed here has some inaccuracies in it.  Cure Autism Now no longer exists and hasn't since 2007.  It was merged into Autism Speaks.
You mention that there are no longitudinal studies on autistic outcomes.  That is not accurate.  There are a number of longitudinal studies on autism outcome, search Pubmed.gov to find them.
I do believe there is a wide chasm between the UK view of autism, largely due to campaigns by the National Autistic Society, and America and this I believe is due to cultural differences.  I like the UK view of autism much better.However, schooling for autistics in the UK is probably worse in than in the US from what I have gathered from my UK friends. Though as an American, I speak with no authority on this.
The US does have a nationalized, though means and age tested, healthcare called Medicaid and Medicare.  

In your description of Kanner and his subjects, there is nothing new to me as I said before.  If I were a psychology professor, not sure who your thesis mentor is, I would push you to find something new.  Thus why I suggest looking in the New York Times archive.  If you would like some links to autism from a historical basis, there is a lot of information to be found on neurodiversity.com.
I do give you credit though for looking at the actual data and reports, rather than relying on anectdotal information that is so prevalent on the internet about autism.
I guess I would need to know more about what your trying to accomplish in your thesis to understand better on how to view some of the information here.  
I would take exception to calling autism an illness.  Autism, according to what we know through peer reviewed published findings is that autism is a neurological disorder most likely present from birth.  Perhaps illness means something different in the UK than it does in the US, I'm not sure.
I'm sorry you didn't get more responses, but good solid reporting rarely gets attention in the autism world.  If it doesn't challenge causation theories people have, its been my experience that it is ignored.  Sad, but true.

Hi Robert, and thank you so much for your reply! My thesis supervisor is Tony Attwood who is very knowledgable about Asperger's Syndrome.

As for longitudinal studies, yes, there are many, but none on the terms I set for an autistic child - right here, right now, no intervention at all. All we have is Kanner's original studies, as published in Childhood Psychosis: Initial Studies and New Insights, Winston, Washington DC, 1973.

The reason I was quoting those in my thesis was in a section where I discuss the claims made by Lovaas in his ABA studies, claims which are still quoted in literature and by some groups. While Lovaas, in one very flawed study in which aversives were used, claims a 47% 'success' rate, this percentage has never again been replicated WITHOUT physical aversives. In fact, follow-up studies throughout the world, most of them by Tristran Smith, show a pre- and post-test improvement rate of between 12% and 15%. My point, as I say in this section of my thesis,  is that this is the EXACT figure of Kanner's 'emergers' who had no intervention at all, and certainly not EIBI!

Thank you for giving me the crdit for looking at the data. I am looking at it very critically indeed, and have read 2,000+ research papers to date, preferring to use SCOPUS than pubmed as it conforms to my use of RefWorks as bibliographic software and includes most of the pubmed papers, as well as the education studies I need.

Please note that I have never called autism an illness. That's as far from my thinking as anyone could get. In fact, I don't even use the term ASD. I use the term 'autistic spectrum CONDITION' as I believe it to be the inborn preference of local over global processing, where neurotransmission is both over-connected locally and internally, and pathways to the pre-frontal cortex and mirron neurone system may be compromised. I see autistic intelligence as invaluable for the survival of humankind. The word ILLNESS which you quoted, was from KANNER, not from me and was contained within a Kanner quote, although this system doesn't allow me to use indents etc and won't copy and paste in a quoted format, so you may have been misled by that.

As for the US and the UK being different in the conceptualisation of autism, you are quite right, and this is because in the USA you tend to use the medical model, rather than the social-constructivist model that we more habitually use in the UK. The medical model does tend to assume a 'cure' for things :)

The biggest difference is in your IDEA legislation and our 1981 Education Act. We do not classify or categorise learning needs by disorder, as IDEA does. Nor do we call them 'disorders'. We call them 'difficulties' and any additional help a child gets at school is given purely on the level of additional help needed, and not on clinical diagnosis of one DSM/ICD disorder or another.

This has led to tolerance and acceptance of learning needs, but a rather more disorganised way of addressing them, in the UK, which is why parents of children on the spectrum are rather less happy with their child's education, as we have few special schools, and very few self-contained classrooms, to address particular conditions. I've just written a report for the Irish government on the adressing of special ed needs, internationally, which is why I can see quite a lot of gaps between the USA and Europe.

BTW that extract from my thesis was written in 2006, before CAN decided to amalgamate into the Autism Speaks hydra :)

Thank you for your advice about the New York Times archive. I may look into it. And yes I know about Kathleen and David's site, and have been on there for many years. It was through that site that I traced an unpublished (in English) paper by Hans Asperger, and had it translated. Funnily enough, it's the paper in which there is his very famous quotation about success in the arts or science being impossible without a 'dash' of autism.

With all best wishes and thanks.

@Barbara Jacobs, thanks for your detailed responses----I've more to say but wanted especially to note your point about the data in the Lovaas study. My husband and I were always wary of the "47% success" rate and of the exaggerated claims for what ABA can do. (I see it as an effective teaching tool, particularly important for my son, and not the only one.)  Would like much to know more about your report to the Irish government on special ed; we are trying to bring an international perspective to this blog. Thank you!

Hi Barbara Jacobs -

"Please note that I have never called autism an illness. That's as far from my thinking as anyone could get. In fact, I don't even use the term ASD. I use the term 'autistic spectrum CONDITION' as I believe it to be the inborn preference of local over global processing, where neurotransmission is both over-connected locally and internally, and pathways to the pre-frontal cortex and mirron neurone system may be compromised. "

It guess it all depends on where you stop looking.  If the only thing you look for is mirror neurons and over connectedness, then it becomes simple to define autism in such a way. 

Unfortunately, if you begin looking elsewhere, it is simple to find that the differences in autism physiology and 'normal' are widespread, heterogeneous, and in many cases, very similar to conditions you would definitely consider illnesses. 

At an immune system level, we know that children with autism have a pro inflammatory cytokine profile; that is, a dysregulated immune response skewed to a state of inflammation.  We know that when we measure chemicals shown to be inflated in diseases like asthma, diabetes, and arthritis, those same chemicals are also increased in autism; and in fact, as levels increase, so does severity.  Likewise, when we measure anti inflammatory components of the immune system, we find that children with autism have lower amounts than their undiagnosed peers; and indeed, in other inflammatory diseases.  If we look at gene expression, we find that expression of particular types of natural killer cells are signifcantly decreased in autism; but not in Aspergers.  If we search for auto antibodies to brain components, again we find that you are much more likely to have positive findings if you have an autism diagnosis. 

If we measure IGG responses to proteins in wheat and / or dairy in children with autism and without, we again find that having a diagnosis of autism means you are much more likely to generate a robust allergic response to these proteins. 

If we look for chemical hallmarks of neurological inflammation, we find that an autism diagnosis is a pathway towards increased neurological inflammation, as opposed to less. 

If you have an auto immune disorder the chances that you will give birth to a child with autism is much higher than if you do not have an auto immune disorder; usually. 

It goes on and on. 

"As for the US and the UK being different in the conceptualisation of autism, you are quite right, and this is because in the USA you tend to use the medical model, rather than the social-constructivist model that we more habitually use in the UK. The medical model does tend to assume a 'cure' for things :) "

Why would anyone assign a condition with the findings detailed above anything other than one that belongs in the medical field? 
- pD

"I'm sorry you didn't get more responses, but good solid reporting rarely gets attention in the autism world.  If it doesn't challenge causation theories people have, its been my experience that it is ignored.  Sad, but true."
Posted by passionless Drone on 01/08/2009 @ 09:08AM PST

See Barbara, I brought out those who's focus and perserveration is causation theories and got you some more responses, I knew it would work.  Ask Tony if its true he made fun of AS folks walking gait recently and if he is aware of the reaction and disappointment in the AS community, otherwise, I like a lot of his work.

"It guess it all depends on where you stop looking.  If the only thing you look for is mirror neurons and over connectedness, then it becomes simple to define autism in such a way. "

Yes. That's why I do it that way. I like simple.

"Why would anyone assign a condition with the findings detailed above anything other than one that belongs in the medical field?"

I prefer to look at it in the human-being field. Just my preference! Medicalisation of naturally-occurring variables and adaptations doesn't help, in my humble view :)

"Medicalisation of naturally-occurring variables and adaptations doesn't help, in my humble view :)"
Wow, that would be a great thesis right there.  I've had so many of my self learned adaptations characterized as something it wasn't ( i.e."treatment" made long ago etc.) and "stolen" from me as something someone changed in me rather than something I did on my own.  Its very disheartening to constantly hear how someone helped me when it was me helping myself and giving me enough time to understand things.  I tend to take longer than the neurotypical person in learning something, but once I understand all the angles, its only then that I can use that to form an adaptation to help me understand things. 

"Ask Tony if its true he made fun of AS folks walking gait recently and if he is aware of the reaction and disappointment in the AS community, otherwise, I like a lot of his work."

The British sense of humour is very different from that in the States. When I did one lecture there, I demonstrated the 'autistic stance' which I'd seen my partner doing, and said  'It looks a bit gay, if you want to see it that way.' and got some furious reactions from some in the audience. I find the US audiences take some things very seriously which we Brits don't, particularly. Our natural propensity is to take the pss - out of ourselves and others and anything sententious. We are a silly nation. You, on the other hand, are wonderfully serious and sentimental in equal measures, but NOT silly, at all. We get ridiculously drunk on Saturday nights and get even more silly. It's as well we're not permitted firearms, or we would be a dead nation.

The other faux pas I made, in the USA, which went down like a lead balloon is when I said that my partner at the age of 8 had stopped going to Sunday School because he'd discovered after some in-depth reading there were no dinosaurs in the Bible. Oh dear. Never say things like that in the Bible Belt. Whewwwwww. I'm still recovering from that encountr with creationism. :)

That last paragraph was too funny.  I live in the Bible Belt and I can relate.  We do tend to take things down here way to seriously when it comes to religion.  I'm a closet agnostic.
So, I guess its true about what Tony did?  I had withheld some judgment because I didn't have first hand knowledge.  I'm sure it was just an honest mistake but what he did conjured up very harmful images of bullying that most folks with an ASD (I don't mind disorder as a descriptor, I don't consider it stigmatizing mainly because of the wider disability view I have rather than something specific to autism) have suffered.  I hate to be a downer about this but I don't think it was just an American thing. I first heard about it from some UK friends and then it came from everywhere, Israel, Germany, Norway etc.  It conjures up images of the propaganda used against the disabled, the mocking of Al Jolsen etc.  No one's humanity should be subject to mockery (which I don't think Tony meant to do), especially the powerless.  There is a power differential here I think you would agree that makes it different.  I guess some in the AS community hold him to a higher standard because he has done so much good and it was a bit sad to see an AS "champion" do that.

Hi Robert! :)

To be fair, I don't know whether Tony did what you say or not, but I've never seen him do it. I'll find out for you, though!

With all best wishes.

Hi Barbara Jacobs -

I'm a little bit torn here; if you want to congratulate yourself for having read 2000 papers on autism while simultaneously acknowledging a myopic view for the sake of keeping it simple, who am I to complain?  Knock yourself out. 

On the other hand, I am of the belief that this is a mindset that is, in fact, dangerous in a variety of ways to children like my son. Our pediatrician felt exactly the same way; and as a result we delayed taking some very simple steps that made tremendous differences in his life. 

When a legislator with the power to manipulate laws governing things like insurance coverage for autism holds the view that autism isn't a real disability; but just a set of 'naturally occurring variables', thousands of kids are affected based on the decision he or she makes based on this notion.  

Consider the parents of 'normal' children who see children with autism struggling with their environment, but to the uninitiated, are simply behaving poorly.  They no doubt pass their judgements on to their own children; that kid is a bad kid and his parents are poor parents, kids with autism don't have anything wrong with them anyways, just adaptations and naturally occurring variables.  It is ultimately the child with autism who is penalized on the playground for this evidence free opinion.   But at least they've got the option of keeping things simple. 

In a nuts and bolts sense of the need for acknowledging the need for the medicalization of autism, children with autism have been shown to have subclinical seizures at very high rates; approaching sixty percent.  And yet, the vast, vast majority of children are never even evaluated for this, meaning no actions are ever taken that might help ameliorate the seizures.  Should we really write off seizures as a naturally occurring variable or adaptation?  Would you recommend an epileptic disregard medication as his condition is just an adaptation? 


- pD



If I've learned anything from reading Kristina's blog; it is that we need more acceptance and understanding for children with autism.  Ignoring what has been observed in the medical realm is a poor way to go about this. These kids have real, and in many cases, addressable medical conditions. Pretending otherwise does nothing to mitigate this.

pD,
I don't think epilepsy is concurrent with autism, but I would like to see where that 60% comes from.  No one in my support group has epilepsy, and give or take most months we have about 20 members at the meeting, including folks with an AS diagnosis, AD diagnosis and I think one guy had a CDD diagnosis.  I have known autistic folks with epilepsy, some forms of which are life threatening I believe.  However, I don't think Barbara is supporting the idea of denying life saving medicine for seizures.

"I'm a little bit torn here; if you want to congratulate yourself for having read 2000 papers on autism while simultaneously acknowledging a myopic view for the sake of keeping it simple, who am I to complain?  Knock yourself out."
I also don't think Barbara is saying autism isn't a disability, but that people are 3 dimensional and that she recognizes that we do have self adaptations.  The view that autism was caused by cold "refrigerator" mothers was once standard medical thinking and the neurological basis of autism was considered "myopic".

"When a legislator with the power to manipulate laws governing things like insurance coverage for autism holds the view that autism isn't a real disability; but just a set of 'naturally occurring variables', thousands of kids are affected based on the decision he or she makes based on this notion."

I don't think Barbara stated that autism isn't a disability.  I consider it a disability, I think both bloggers here consider it a disability.  But, the need to stigmatize to stereotypes diminishes effective advocacy because it calls into question the rationality of the stigmatizer.  There is a great need out there for doctors, especially pediatricians (see the AAP statement on the need for additional education of Peds on Autism), to look and recognize common ailments occur in the autistic population just like they do in other populations and to not just assume its a part of autism. 


"Consider the parents of 'normal' children who see children with autism struggling with their environment, but to the uninitiated, are simply behaving poorly.  They no doubt pass their judgements on to their own children; that kid is a bad kid and his parents are poor parents, kids with autism don't have anything wrong with them anyways, just adaptations and naturally occurring variables.  It is ultimately the child with autism who is penalized on the playground for this evidence free opinion.   But at least they've got the option of keeping things simple. "

I don't have an answer on how to cure ignorance, but I do think national campaigns like the National Autistic Society's in the UK (think differently) is a great step I'd like to see done here in the U.S.  It raises awareness without stigmatizing autistics.  Unfortunately, here in the U.S. we have campaigns that encourage the stigmitization of autistics by scary warnings that it could happen to you, you could get autism in your family.  It encourages people to fear us.  If it were medieval times, I'm sure we would be exorcised of our demons or chased with torches and pitchforks like some ogre in the swamp. 


  

Passionless Drone, that isn't a good name for you. You sound very passionate, very frustrated, and those emotions may be getting in the way of a little bit of rationality.

The rational position is this: children on the autistic spectrum often have a number of other conditions which are treatable, but are NOT the autism itself.

Where the co-occurring condition is treatable: caeliac disease for instance, then treat it, because it is treatable and your child will feel a whole lot better. Gluten and casein free diets can often help with this.

Temple Grandin and Donna Williams both take medication - not for AUTISM, but for co-occurring treatable issues.

As for epilepsy - I am epileptic, and there is no such thing as a sub-clinical epileptic seizure. There is sub-clinical epileptiform activity in many brains of children who are diagnosed on the spectrum and this can be seen very clearly on EEGs, especially sleep-deprived EEGs, but if they're not actually causing seizures, all you'll do by giving an anti-convulsant, is the make the child sleepy.

You may be confusing this will the very-difficult-to-spot 'complex partial seizures', which many children suffer from, unnoticed. They are an expression of the epilepsy I have, that originating in the temporal lobe. My seizure activity goes from simple partials (sometimes called an aura) through complex partials, right into full tonic clonic, so I really do understand. It is vital, if there is clinical seizure activity, and this includes simple and complex partials, to have an EEG, and if this confirms it, to take medication, which will have to be adjusted over time. However, epilepsy is NOT autism.

Doesn't your health system allow you to have free EEGs when clinical epilepsy is suspected? I find that rather difficult to believe.

As to what other people think about your child - that's just their ignorance. Why care what other people say? Just put them right. The more we challenge ignorance and stupidity and prejudice, the happier our children will be - ALL our children. I grew up in an age when Blacks had to sit in the back of the bus. I shouted about that. I grew up in an age when women, including those in the professions like myself, earned less than men doing the same job. I shouted about that. I grew up in an age in which we all thought we'd be blasted to oblivion through nuclear war. I shouted about that. I grew up in an age in which the USA sent its young men to fight an unwinnable war in the Far East. I shouted about that. I lived in an age when to be gay, or to attempt suicide got you locked up in prison. I shouted about that. And because I and millions of others  shouted about those things, we changed things for the better.

So just tell those playground bullies and evil moms that your child is on the autistic spectrum, and is a lovely kid, and what do they want to do or say about it, huh?

The change starts with you. The personal is political.

PS - did you know that the US Senate apparently decided that epilepsy is NOT a disability under the IDEA legislation?

Ah well.That's me told, isn't it? :)

"PS - did you know that the US Senate apparently decided that epilepsy is NOT a disability under the IDEA legislation?"

Epileptic students are covered under Section 504 of the Rehabilitation Act of 1973, essentially the same act as the IDEA in its purpose.  Section 504 covers a wider population than does the IDEA but protects each student's rights to a free and appropriate education.  Unfortunately, the act does not provide funding to school districts to provide certain services, so if an epileptic student has medical needs such as a nurse to dispense medication or canine assistance, the parents have to fight for the funding which will come out of the general education fund.  However, the act does provide funding for other services.  For instance, a blind child would be provided learning materials such as a Braillist/Reader. 

I would agree that epileptic students don't fall under the umbrella of the IDEA because the services provided under IDEA aren't really needed by the epileptic student.  I guess the two acts are really a matter of semantics but both look to provide students with disabilities certain rights and protections.

Ah, thanks for explaining that, Robert, as it was getting me slightly miffed (BTW, I like you being around!). I'm not entirely sure, though that you can say that the epileptic student doesn't fall under the umbrella of IDEA 'because the services provided aren't needed by the epileptic student'. SOME epileptic students (such as those you cite) may need the IDEA provision; most won't. That's why we don't specify categories for 'additional educational need' in the UK. It's very specific to the person and is pretty inclusive, here.

Aw, the more inclusive the better.  Both Acts, the IDEA and Section 504 are just different Acts responding to the same thing, need.  If a child is tested and one of the measurements shows a need under the IDEA, then the child would be covered under the appropriate Act.  For example, if an autistic child also had epilepsy, he/she would be covered under both the Section 504 and IDEA.  If a blind child also tested to have a learning disability, he/she would be covered under both the IDEA and Section 504.

Epilepsy, in isolation, doesn't qualify for services under IDEA. Epilepsy with identified and co-occurring disabilities (dyslexia for example) does qualify under IDEA.  Hope that is helpful.

Hi Robert Adams -

Here is an abstract of a review wherein a rates of concurrency between autism and epilepsy are between 8 - 40%.

http://www.ncbi.nlm.nih.gov/pubmed/15791919?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=2&log$=relatedarticles&logdbfrom=pubmed

As far as 60% for subclinical seizures, here is my reference:

http://www.ncbi.nlm.nih.gov/pubmed/16403678?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

"The view that autism was caused by cold "refrigerator" mothers was once standard medical thinking and the neurological basis of autism was considered "myopic"."

I agree with you; but the death knell of the refrigerator topic was the observations that there were physiological differences in people with autism versus those without.  In other words; the recognition that autism isn't just a behavioral condition, but one of the body, a medical condition.

"But, the need to stigmatize to stereotypes diminishes effective advocacy because it calls into question the rationality of the stigmatizer."
 
Would you consider any of the things I posted stigmitizations?  If so, which?  It is not my intention.  Is it wrong to say that epilepsy is common in people with autism if it actually is?  I'd say it's worse for such a thing to be relatively unknown, as opposed to known. 

"There is a great need out there for doctors, especially pediatricians (see the AAP statement on the need for additional education of Peds on Autism), to look and recognize common ailments occur in the autistic population just like they do in other populations and to not just assume its a part of autism. "

As far as pediatricians needing to know more, we are in complete agreement; unfortunately, the mindset that autism stops at overconnectivity is exactly the opposite of this, and this seemed to be what Barbara was proposing. 

"I don't have an answer on how to cure ignorance, but I do think national campaigns like the National Autistic Society's in the UK (think differently) is a great step I'd like to see done here in the U.S.  It raises awareness without stigmatizing autistics. "

Curing ignorance is a tough bill, which is one reason I'm more intent on curing my son than fixing humanity.  We'll have to just disagree here.  Awareness is fine and good, but if someone says something that is seemingly backed by observation; that autism is highly correlated with seizures for example, it is taken by some as stigmitization.  I'm not sure how to bypass this.  (?) 

"Unfortunately, here in the U.S. we have campaigns that encourage the stigmitization of autistics by scary warnings that it could happen to you, you could get autism in your family.  It encourages people to fear us.  If it were medieval times, I'm sure we would be exorcised of our demons or chased with torches and pitchforks like some ogre in the swamp. "

Our experiences are different; the people I know personally have likely come to fear autism, or at least not want it, but it has nothing to do with the propensity for Autism Speaks to take out advertisements. 

It has to do with seeing how profoundly disabled my son is, how (until very recently) he had a penchent for strking anyone who was too loud, including infants; it has to do with knowing he is unable to tell us if he has an ear infection; or understand the concept of today, tomorrow, or yesterday; or the dangers of running into the street; or going months without having formed bowel movements; or indeed, having a much, much greater likelyhood of developing epilepsy than their children. 

Facts are facts, and those are the facts of everyday life for thousands of parents out there.  If Autism Speaks stopped promoting the message you fear so much tomorrow, it would have no effect on what parents tell each other and see for themselves. 

Please do not take this as a personal attack, or indeed, an intentional stigmitization, but rather, just a statement of how autism has affected my son and my family.  I've had a difficult time expressing my experiences in the past with people in support groups wherin my frank and honest recounting of my life with Luke has been misconstrued; I can tell you I just don't have any other combination of words to detail what autism has brought us.  People we know can see that Luke is a beautiful and loving boy who is very happy most of the time, but the same can be said of nearly every child; with or without autism. 

-pD 

"As far as pediatricians needing to know more, we are in complete
agreement; unfortunately, the mindset that autism stops at
overconnectivity is exactly the opposite of this, and this seemed to be
what Barbara was proposing."

No. Please read my post to you. I stop at AUTISM which is exactly as I described it to you. But as I say, there can be medical conditions, also, in the same child. Those medical conditions are not AUTISM, can cluster around AUTISM, and most are treatable.

As for the Chez paper, I read it some time ago. But I can't find any reference to Chez talking about 'subclinical seizures'. These just don't exist. What Chez writes about is epileptiform activity. This will not necessarily produce a seizure.

All best wishes. I like your passion. My son is also called Luke :)

Me:"Unfortunately, here in the U.S. we have campaigns that encourage the stigmitization of autistics by scary warnings that it could happen to you, you could get autism in your family.  It encourages people to fear us.  If it were medieval times, I'm sure we would be exorcised of our demons or chased with torches and pitchforks like some ogre in the swamp. "
pD:
"Our experiences are different; the people I know personally have likely come to fear autism, or at least not want it, but it has nothing to do with the propensity for Autism Speaks to take out advertisements."  


I've had a difficult time finding employment since those adds started to air.  I've always declared my disability at time of interviews and applications.  It wasn't until the past couple of years that I have been asked about it.  I use to disclose that I had an autism spectrum disorder because this is a covered disability but in the last few years and the numerous rejections, I started using Asperger's Syndrome.  Most employers don't know what that is and oddly, I've never been asked.  I haven't been rejected for work since I started using that instead of ASD.  I can't blame Autism Speaks, I can only assume that it's "awareness" campaign has been successful because of what my "gut" tells me.  I never had these problems before.  So yes, our experience has been different I guess.
Having epilepsy isn't stigmatizing, saying children should be feared is. 
"Facts are facts, and those are the facts of everyday life for thousands of parents" 

I'm not sure what you mean?  Is that all there is to your children?  

Facts for me is that I live in a 1973 Volvo 244D and type from a library computer.  I don't blame that on my autism, I blame that on lack of opportunity for someone like me and fear.  Fear of the awkward way I walk, fear of my tics, fear because I may not look you into the eye and its assumed I have something to hide or I'm dishonest, fear of my monotone voice (never got that one but I've been told I speak without any emotion) and I could go on and on.  I've even been arrested for simply walking down the street and looking suspicious.   

Endless talk of a cure won't change things for autistics that are children now.  Unless we change the dialogue and start focusing on long term goals of inclusion, opportunity, education, and yes acceptance, the autistic children today are sure to follow behind me, will replace me and will live like me.

Hi Barbara Jacobs -

"Passionless Drone, that isn't a good name for you. You sound very passionate, very frustrated, and those emotions may be getting in the way of a little bit of rationality"

Hehehehe.  It may indeed.

"The rational position is this: children on the autistic spectrum often have a number of other conditions which are treatable, but are NOT the autism itself. "

Well, if we accept your definition of autism, then OK.  In some sense, autism definitions are like opinions; I'm working on not getting so testy when someone has a different one than my own.  In short, I'm not convinced the over connectedness model is of sufficient complexity to explain the variety of physiological differences we see in autism; differences which ultimately lead to the concurrent, treatable conditions. 

By way of example, very recently a paper came out showing that children with autism had increaed levels of macrophage migration inhibitory factor; a messenger in the immune system that takes part in how the body initiates an immune response; not only did researchers find increased levels of this substance, but as levels rose, so did autism severity.  Other diseases with increased levels of this substance include asthma, diabetes, and arthitis.  In this case, it was also found that having a known promoter polymorphism was highly associated with a diagnosis of autism. 

So not only do we have genetics associated with the immune system associated with autism, but a correlation between circulating levels of the resultant factor and behavioral severity. 
If you are interested, the study is: "Macrophage migration inhibitory factor and autism spectrum disorders."

Another very recent study, analyzing a substance responsible for anti-inflammatory immune regulation found similar, but inverse results; kids with autism had less of a substance known to reduce immune inflammatory responses; and as substance levels decreased, so did autism severity.  Sort of a 'double whammy', if you will. 

"Decreased transforming growth factor beta1 in autism: a potential link between immune dysregulation and impairment in clinical behavioral outcomes."

These children may have all had over connectedness as well, but I struggle to see how we can write off findings like this as tangential to autism; precisely because we can find linear relationship between chemical measurements and severity.  To me, it seems clear that structural differences are not the only thing driving autistic behavior, how else do we explain the correlation to severity?  And with that, models that call anything other than structural brain differences 'non autism' fall apart. 

"As for epilepsy - I am epileptic, and there is no such thing as a sub-clinical epileptic seizure. There is sub-clinical epileptiform activity in many brains of children who are diagnosed on the spectrum and this can be seen very clearly on EEGs, especially sleep-deprived EEGs, but if they're not actually causing seizures, all you'll do by giving an anti-convulsant, is the make the child sleepy."

You have read a little more than over connectedness; it would seem.  You are correct in that my recollection regarding 'sub clinical seizures', and sub clinical eliptiforms, and I will stand corrected.   However, I note that in the Chez paper, children placed on seizure medications would up with either improved or normalized eliptiforms.  I think this, in general is a good thing; the author of this book is currently conducting a larger scale study on use of this type of drug with children with autism and is reporting good results.  Other, less structured experiments have reached me with similar annectodal evidence. 

"As to what other people think about your child - that's just their ignorance. Why care what other people say? Just put them right. The more we challenge ignorance and stupidity and prejudice, the happier our children will be - ALL our children."

When I am around, this is possible.  In the meantime, I seem to find myself determined to make sure that people don't unintentionally spread misunderstandings (or what I perceive to be misunderstandings), thus, hopefully, reducing the number of idiots that need to be put right.  There are already enough idiots and I'm not sure I have the energy to set them all straight.  Even with all this great extra recognition we've been getting; there are still a lot of people who don't know a relative with autism, very unlike civil rights movements of the past.  Everyone knew a woman, or a black person, and there was a critical mass of them in order to initiate real change; I'm not convinced there will be a sufficient number of like minded individuals concerning autism in a meaningful timeframe to help my son.  Maybe if Kristina keeps writing, I'll be proved wrong on that too. 


Whew.  Enough for now.  I may respond to the rest in a day or two.

- pD 

Barbara Jacobs, I have a question for you.  Which part is the autism?  When an autistic child loses all traits of autism through biomedical and/or behavioral interventions, how is it that they are still autistic? 

 "Which part is the autism"

The innate cognitive preference for local over global processing. Hans Asperger called it 'autistic intelligence'.