Acceptance is a much stronger concept  -- and more difficult -- than recovery.

I am happy that you have been chosen to lead this blog. However, I dont always agree with your viewpoints, but thats besides the point. Recovery can mean different things to different people, and many children are capable of "recovering", and because of that possibility I dont think its fair for you to impose your results on others. Your results have nothing to do with the results that other families, like mine can & have achieved.
My idea of recovery since the diagnosis, was to balance Jeremy to the point where he would be able to absorb & develop that which to others comes naturally.I came across a clinic in Scottsdale, AZ named ENVITA MEDICAL CENTER. A few friends in a business circle I am involved in had taken their children there and their kids had improved dramatically in their Speech & Social Skills. That is all I was looking for. I think MOST parents are not really looking for a cure, they are looking to be able to make a connection with their child. I got that and so much more with the treatment that was offered there to us. Within days, Jeremy was making more eye contact, holding his gaze while looking at me, began pointing. In a matter of 4 months Jeremy had recovered the 10 or so words he had lost in the regression. Flash forward to 2009, on New Years Day, Jeremy, who is 3.5 yrs old, a kid who a yr ago couldnt say one word at all, said to his grandma, "abuela, lets go choo choo train". I dont care how little evidence anyone has on "recovery treatments", I am glad I just read your posts for that, as reading material and frankly to motivate me to continue with his treatment. Had I listened to you, I would not get those breakout moments Jeremy is having each day. Maybe since you probably know more people than me, you can look up the following treament its by SEROYAL UNDA, the name is "Brain Protocol Harmonizing Kit". Is Jeremy cured? No, but he is definetely in a much better state now than he would be if I would have just done the basic things you talk about. I take advantage of the preschool, therapies & the biomedical therapies,  and to me and many more people out there, that combination works. I think it sucks you knock it down, considering that you walked down that route before yourself. Anyhow, congrats on getting this new blog. I will keep reading, as I am glad its an issue being looked into by our new administration.

hello, I would like to just say.. that as it is autism roulette with vaccinations, it is a recovery roulette, we don't know who will recover and who won't. But , there is sufficient evidence out there that biomedical does work in various ways. Each way is different for each child with autism. Children can and do recover to various degrees, many have full recovery. My son is in partial recovery and doing well. Don't disregard the harding working parents and kids with autism who see results from bio medical.. they are OUR EVIDENCE that we need. Please don't give an impression to the world that autism is just something we parents have to accept. I will never accept the autism, I accept my son. Peace, Lia

Cool post.  Acceptance doesn't means defeat or giving up. 

Acceptance doesn't necessitate abandoning supports, assistance, or even meds. 

I'll go out on a limb and suggest that Kristina is talking about the blind fervor that some have used and abused to fit a square peg into a round hole.  I know I was caught up in the race to get through the magic window.

Envita in Scottsdale, AZ, is run by a naturopath named Dino Prato.

I have some of the books you refer to.  Recovery was never something I exolored or thought about.  I accepted my kids from the initial diagnosis and never did go through those emotions on the wheel they say parents do like guilt and grief.  I think if you are around disabiltiies from a young age it is different. 

Lets begin with a very scientific and logical premises. To measure the success of an intervention, you must know what development would happen with out such intervention....

1) most individuals develop new skills and abilities over time . Developmental "delay" implies that some development will happen
with time .

2) all individuals on the spectrum are unique in how far they will develop and what their potential will be in developing .

3) little if any research has been done on current autistic adults to understand how/why their development has occured or what might have triggered regressions of abilities over the life span .

My belief is that adult autistics ARE the missing piece of the puzzle but overlooked as scientist focus on genetic markers, treatment,causes and cures . Talk about "putting the cart" before the horse...which results in exactly what they now have...the result of going nowhere fast .

The first step is in admitting that autism was not invented in 1994, when it first made it into the DSM . We have always been here but more hospitable environments...family farms, apprenticeship learning, factory work, families that supported "eccentric aunt or uncle", allowed many of them to survive ...the less fortunate ended up with psychiatric Dxes and locked up in institutions or living under bridges...(where I once was and some are still .)

I do believe there are some environmental toxins that our immune systems are reacting to and that may be causing some co-morbid conditions but the neurology labeled as autism has been with us for a very long time . Until scientist admit this reality, progress ill be very slow as they focus on the bark instead of the forest...(how autistic of them) .

Thank you Kristina. You are once again a calm voice in the politics of autism. I am so glad you will be writing here.
I often feel pressure to find 'treatments' for my son so *other people* can feel like I am doing something because his autism makes *them* feel bad. I have most recently tried to explain that he is not sick, so asking if he is "getting better" is not appropriate. He is developing, and growing and learning, it's just over a longer time-line, and in different ways than we expected our child would develop. 

I'm very thankful (and part of this ought to be attributed to your outspoken support of education over biomedical "interventions" - I've been a reader for quite some time) that my wife and I have never thought about trying to "recover" our son, who was recently diagnosed. We have been getting him educational interventions for 18 months now - speech language pathology, occupational therapy, developmental therapy - and I wouldn't have wanted to spend any of our (already limited) resources trying to do anything that would take the focus off trying to help him learn better.

I also think (like Kev Leitch above) that the focus on recovery is to suggest that some hidden demon lies within our children that needs to be exorcised, and I cannot sympathize with this feeling. When I look at my son, I do not see a child "possessed" with autism - I see a child who needs my help to be able to learn and grow in the world. Maybe it's this attitude that makes me such a strong believer in education (well, being an educator helps, too), but I can't imagine having such feelings about my son. If someone has some insight into the "recovery" psychology, I'd be willing to listen.

The government really needs to get a better grip on this ASD matter than just 'acceptance'.  The numbers have increased - as the number of school systems around the country that can't cope with the financial and staffing needs can attest to - and these kids are going to age out into dependency on the social security system, if all stops are not pulled out in getting to the bottom of the phenomenon.  And that includes developing new biomedical interventions, and brain-training techniques like the Tomatis Method, and so forth.  It is not a time for settling for the status quo, and just accepting these kids as they are.  That's not fair to them, and it's not fair to their carers (who in many cases have sacrificed their own lives to the job, and in any event will at some point not be able to continue to do it), and it's not fair to 'society', who will have to pick up the tab.  The government must pay thorough attention to this matter, and act accordingly.  Time's a'wasting. 

I agree that the government must make autism a priority, there is no such thing as a genetic epidemic. Autism was a rare occurance at one time. Now, the school districts cannot keep up with the huge surge of pre schoolers on the spectrum. If my child had cancer, I would do anything to get him treatment. My son has autism and I will do what I can to help him continue his recovery. What is the difference? As far as resorting to a "good education", open your eyes, there are a shortage of teachers with good training in autism. I have had to countless of times, teach teachers how to teach my son. When teachers graduate today, they have no clue. My son is older, 17, so I have been around the block a few times. For you who have very young children, get ready for a huge rude awakening. Children with autism feel sick, they are in pain, the goal of biomedical is to help rebuild the immune system, healing the gut, and helping to establish good bowel function and to chelate to rid the body of mercury and other toxins.   ABA is only helpful when the child feels better enought to learn.  Again, let's not mis inform any readers of this blog that autism is genetic. peace, Lia

I'm all for freedom of speech but I wouldn't join a vegan group to try and sell my hamburgers . Perhaps I just had better social skills training?

If someone really feels that autistics need a "cure", perhaps they can preach to each other on Autism Speaks and let those who desire another path of helping autistics get on with that goal ?

I believe that there is a definite genetic component to autism and think there is enough current research to back this up. There would be more if scientist "bothered" to make it a priority of researching adult autism and assistance for adults in getting diagnosis but then they might actually offer to help them ? Many adults don't learn about their own autism until their children are diagnosed . Just because you don't have  family history of autism(that you are aware of...you might want to check into some of those weird uncles?), doesn't mean there is no genetic connection...I think they refer to that as "Theory of Mind" issue but don't feel bad about it....many Nt's appear to suffer from that illness when it comes to autistic minds .

hello again, I would like to add another concept here for those who accept and not fight for their child, remember Lorenzo's oil? the movie, the child and the parents who would not accept, who moved mountains and went against the slow as a snail medical establishment.. because "time was awasting"... I would call their treatment bio medical.. no drugs, nothing but two kinds of oils. I never heard of sharp , unfair public statements and comments against the parents of this boy. For what they did and they set a protocol for future boys with this disease. No, they are not cured, they are in recovery. So, tell me, what is the difference between US and these parents of Lorenzo? I know that this boy made it to adult hood and passed away, when they started the oil, too much damage had occurred, but thousands of boys were started on it young and living typical lives but must take the oil for the rest of their lives. Why are the parents of children with autism are given such a hard time? The world rejoiced with the discovery of the protocol , so why is the world showing massive resistance to autisms' biomedical protocol? peace, Lia

hello, again.. on my last post, I know that Lorenzo had a genetic disorder, the point I was making, was that the parents had the passionate drive to find a way to help him. They did not just accept.. Lia

hi.. as far as autism speaks.. they support the idea that autism is genetic.. so taking it up with them has no purpose. Lia

Although it is true that I have relied on social service interventions in my life for anxiety, depression and chemical dependency...I have never received any assistance for my AS . Should we cure all the mentally ill and chemically dependent by finding the genetic marker and aborting them before they are born to be such inconveniences to society ? (That was rhetorical, I really am afraid to hear your answer) .

If your going to cure me of my inability to read monkey language, (also known as non-verbal communication)...perhaps you could also cure the people who refuse to use verbal language to communicate more effectively .

Before you cure me of my obsessions...perhaps you can consider curing the people in society who are obsessed with buying the biggest house or most expensive car just to impress others ?

Before you cure me of my lack of desire to socialize as often as you deem appropriate...You can cure those who use socializing as a way to manipulate the vulnerable to make themselves feel more important or get something from them ?

Before you decide that my staring at some moving lights is inappropriate use of time...you can cure those who waste hours watching football games,soap operas and reality TV ?

I am not a useless human drain of resources...I am a potential that was never realized because "some people" decided that being like them was more important then being the best me I could be. I and other autistics are a resource that to others have over looked while trying to cure us of our disdain for daily showers or hand-flapping .

Before you even "go there", I do realize that I am on the high end of the spectrum (based on your criteria), but I can't give you my bio here to prove what a long and difficult time it was to get here. What I can tell you, from the perspective of an autistic is that some of the cures are worse then the supposed "disease"
and it hurts me to think of all the children suffering to "get better" .

hello... it was said.. let's hear from some adult autistics and their experiences. Well.. Read about Donna Williams and her struggles with autism and food allergies , sensory issues . Donna is on biomedical instead of the terrible drugs she used to take. She is gluten, casein free and wears the Irlen lenes to help her visual perception. She is living proof that biomedical makes a huge difference... peace, Lia

Let's get the funding for biomedical studies.

The problem is there has to be a group that doesn't get biomedical for comparison, but by reading this website, it seems like there are plenty of parents who are comfortable with their child's state of illness, so they can be the control group.

Another problem is modern PR/legal tactics that deny/destroy and perform character assassination on any expert to disprove their science. Anyone can peer review and give an opposing opinion to discredit the proof. I see people here attacking us without knowing our stories. Why do they have to attack? What do they fear?

You know what? I don't need the science or other people's opinions. My kid is speaking full sentences, wrestling with his father right now on the floor, and it doing terrific on biomed.

The great thing about this country is we can choose. It put me in the poor house, but my kid will probably start kindergarten and I won't need to discuss an IEP with the SD-well, maybe just to keep him on his healthy diet.

 hello, I can't imagine the "cures"... you say cause worse symptoms. I can assure you, these children feel better.. we don't use the word cure.. why do you? we are not trying to cure. I don't see Donna Williams "suffering" because she is doing biomedical.. she tours when she can, writes and enjoys life. peace, Lia

"It seems that our list of autism controversies is proving to be, well, controversial and, in particular, controversy #2, "recovery from autism"

Surely you are not surprised that controversy resulted from your one sided list of Neurodiversity's ten commandments?

They are called controversies for a reason!

Ah, well! I recover from some injuries that kept me from the computer (the recovery of one just about coincided with the other), and you've moved from AV! I'll adjust to the new set-up soon... I think.

Anyway, it's good to see that you're still at it. It's always good to have a voice that is injecting some sanity into the "autism discussion", whatever one might take that to be.

Cliff

Yes they are called controversies for a reason Dr. Chew. That is why I found your opening comment disingenuous.

More imporantly the summary of those controversies was heavily one sided on the Neurodiversity side to which you subscribe. Cliff and your usual ND friends will offer their gratuitous assessments of the "sanity" you offer. Fine. But you know there are other views out there. You know that while you no longer seek recovery of your son most parents fight on.

I am disappointed that with your educational background you could not see your way to a more balanced presentation of autism issues then the narrow perspective to which you adhere.

 

@Cliff, I miss AV a great deal. I hope I can make something of things here.
@Harold, always great to be in discussion and look forward to more of it.
@Nate's mom, have you been following the suggestions for research initiatives in the Strategic Plan developed by the Interagency Autism Coordinating Committee? There's a summary here:
http://www.autismvox.com/1-billion-initiatives-on-autism/

There are calls for research into biomarkers for autism.

Every autie is different.   As such, every autie's needs are different.  That's pretty much the same as everyone, isn't it?

We tried some of the interventions, but my main purpose was to make sure that Bug could lead his best life possible.    Fast ForWord worked for the talking, but I didn't consider him "recovered" just because he could talk. 

As for everything else - GfCf, DMG, etc. - none of that worked much at all.  So most of what we did was geared toward education.  (Kristina already knows this.)   Whatever we can teach them is what makes them free.  And that's pretty much the same for everyone in creation.

I can say that Bug would not "desire" to be different than he is.  And isn't that the main thing?   Not what we want, but what they want?

My son was diagnosed with autism 4 1/2 years ago. I'm traveling the road Kristina describes and the biggest gripe I have is the overwhelming amount of hostility and anger that exists in this "autism community." I've been suspicious of all the zealous biomedical folk I've met, but some of it has helped my son feel better. I've agonized over abandoning ABA sessions that were helping my son to speak, but turning him from an affectionate, sometimes-social, happy kid into a child who cried everytime there was a knock on the door. Though my two cents matter little in this debate, I am just one mom who TOTALLY gets that my kid is awesome AND who wants to make sure that if the world doesn't get their act together by the time I'm gone, he'll be able to find his place in it somewhere. I'll keep reading, Kristina. Thanks for writing.

"if the world doesn't get their act together by the time I'm gone, he'll be able to find his place in it somewhere."
thanks for that, Rebecca-----most parents I've known over the years seem guided less by any kind of "ideology" and altogether by love and hope and wanting to do their best for their child. Sometimes I think all the hostility and emotion in the exchanges is generated by the anxiety we parents feel; by our desire to help and make things all right for our kids. Hope your son is doing well----thank you for reading and please let us know what you think!  many regards----

Two great books on the subject of autism-

Through the Eyes of Aliens, by Jasmine Lee O'Neill
and
Thinking In Pictures, by Temple Grandin


These two books led to my my own "discovery" as an autistic. Which is funny, because I was a Sped student, and I'm currently a Sped teacher. But, that's another story.

I agree with Denise- adults are the key. We've "been there, done that". The world needs people who see things the way we do!

I don't want to be cured. I just want to be accepted.


thanks-

Great blog -- I too have walked the journey and dislike the focus on a cure or recovery.  The DD Act states that "Disability is a natural part of the human condition."  If that is true why are we trying to cure people with disabilities.  Some years ago I had an epiphany about why parents of children with autism are so tied up with the cure and causality.  They get this short window of time when they think things are "normal" and then they have to make a huge readjustment in the context of a disability-negative society.  Think about our culture -- we want everyone to be cured at the end of the movie.  For parents that think vaccines caused their chilld's autism, they can't subscribe to the idea that disability (and autism) is a natural part of the human condition.  It is "caused" by something, so they can't come to acceptance and seek the "cure" and blame the vaccine industry, the environment, etc.  The assumption about autism is just so different and is antithetical to a civil rights view of autism in which celebrates diversity and difference and where the focus is rights, inclusion, and services and supports.

I'd like to clarify something from my pov, and from postings above:
(1) I took this Change.org blog & site to be an aspect of the Obama administration's 'take' on the various subject areas it has introduced for positions.  I was concerned that that incoming administration seemed to be taking such a one-sided position on the subject of ASD.  I did not mean to intrude on a blog that has a different pov on this subject from mine;I just wanted to engage in the dialogue.
(2) As for believing that "there is a definite genetic component to autism," Denise: I agree.  But my research into the matter has led me to a source who says that the genes associated with autism code for glutamate (= synapse formation); and that causes problems, one of which - besides the fact that glutamate is an excitotoxin, causing its own damage to the cranial nerve systems - is that glutamate interferes with/lowers the levels of glutathione, which is the substance that helps the body eliminate heavy metals, including mercury.  And mercury can come from fish, the air (coal-fired power plants in particular), dental amalgam fillings - and vaccines.  (And some vaccines also CONTAIN glutamate/MSG.  Go figure.)  So both 'camps' are right, to some extent, if we can limit the debate for right now to just two of them, ie, 'genetic or environmental'.
The person who has done the study on glutamate is named Carol Hornlein (msgtruth.org), a former food process engineer.  She points out that glutamate is also high in gluten and casein, thus the value (for some) in GF/CF diets.  Her recommendations:* remove glutamic acid from vaccines;* space out vaccines & provide antihistamines with them to reduce inflammation;* limit glutamic acid and aspartic acid in the diet for children below the age of 7 who test positive for the autism genes (like they do for kids with PKU);* limit glutamic acid, MSG  and aspartame in the diet of anyone with the autism genes; and speaking of aspartame:* remove it (half of which the body converts to glutamate) fromALL children's medicines and vitamins.  (And check other food labels!) 
Thus the point that we should not just 'accept' our children in this day and age 'just the way they are'.  The way they are has been modified by people who didn't take into account all the possibilities of what they were doing to us, and then to our children.  And those people are very powerful; thus the difficulty there has been to get all of this sort of info out to the public, and make the necessary changes.  Speaking of a site labeled Change.org...
P.S. In case anyone wants proof of the autism gene discovery:www.medpagetoday.com/Neurology/Autism/tb/5082   This peer-reviewed article states: 'The candidate genes are involved in the trans-synaptic transportation of glutamate, a major excitatory neurotransmitter."    
Let's pull together, folks.  We have a lot of work to do.  We shouldn't be wasting it fighting amongst ourselves.  There are bigger fish to fry.  And fry they should.

I have Asperger's syndrome. I agree with the Neanderthal theory. (Google Autism and Neanderthals) I think we are indeed the descendants of the bigger brained, more creative, less socially skilled Neanderthals who invented just about everything that ancient man thought of as culture and tech: Cave painting, burying their dead with flowers, flutes, ocarinas and the domestication of the dog the sheep, the goat and I think the horse as well as much herbal medicine including some good for the kind of digestive problems we have.. But one thing they never invented was sewing. They would throw animal skins over themselves when they wanted to keep warm.  So I think we were meant to be. But I don't think we were meant to be sick. I love my quirky brain despite the problems not being able to read and respond to facial expressions has brought me and the even bigger problems being face blind has brought me. It cost me medical care for one. I didn't figure out what I was until I was 49 years old. I was one of these misdiagnosed with schizophrenia. I actually have hypothyroidism, adrenal fatigue, gluten intolerance and central sleep apnea but I could get no help for those until a clinic lost my medical records with what it said about my brain and I could start fresh. After that I was treated with a little more respect. Doctors started to run tests they didn't bother to before when they just thought I was crazy and I started to get some real help. However because of my gifts which you can read at http://www.proofgodexists.org and http://www.poemsofdarwinsgod.org  I would keep my brain. But I'd trade my on fire gut with a neurotypical any second in the century.

I would like to ad a comment about what Stan said in his comment. He is absolutely correct. MSG and other Glutamates are most likely our biggest problem. I have melt downs I can't prevent when I ingest MSG. I don't if I can avoid it.  MSG and other glutamates hides under 30 different names in our food supply including natural flavoring which may or may not be MSG. The FDA needs to not allow this but they do. His idea to give antihistamines with vaccinations to limit the brain inflammation that cuts off oxygen to the brain is a wonderful idea. And glutamate is in EVERY live vaccine. Parents often notice their children regressing after that particular kind of shot though they all can do it. It is ironic that glutamine is recommended as a food supplement for people with gut problems. On that I had insomnia and melt downs to the point of being psychotic for the four terrible weeks I was on it.

Kristina, as always, you and I share similar views. And, Lia, I take issue with your claim that "all" autistic people are in pain or have gut issues. My son has none, and he is most definitely not in pain. I'd like to share my essay that's in this month's Portland Monthly that has some similar ideas as the ones you note in here, Kristina. It's also the basis of my next memoir:

http://www.portlandmonthlymag.com/issues/current-issue/articles/p-towndiary0109/

Focusing on causation is a distraction.   My mom realizes this now, after years of biomed done to me to no avail.  What she thought helped me turned out to be just me progressing along a different path.  She was told I was retarded and struggled to get me educated in an appropriate environment.

Parents, please stop focusing on causation, help with the things Kristina has outlined here.

@Elizabeth Hensley, thanks so much for those links and for writing about that theory.
@Kerry Cohen, thanks for linking to your article----look forward to your next memoir!
@Stan, Yes, I had heard of MSG and autism----wrote about that here:http://www.autismvox.com/sure-lets-blame-msg-too/

hello...kerry.. just because your son is not in pain... don't mislead others reading this that all children with autism have no pain. I don't think thousands and thousands of parents lie out there.. look at hanna poling's parents... the chronic bowel and gut issues... the screaming... that is pain... where have you been? don't you read what parents write about? my son had chronic diahrrea ... when he was a baby and into toddlerhood... I am glad you son is fine.. but don't mislead the public... Lia

Interesting that you would read my argument against your claim that all autistic people are in pain, or are anything at all, as misleading the public. How is my claim about my one son misleading the public, and then your claim that all autistics are in pain isn't? I'm not arguing that there aren't autistic people with gut issues. I am arguing that they don't all have them. And I'm also arguing that it is frankly misleading and catastrophizing to suggest they are.

"hello...kerry.. just because your son is not in pain... don't mislead others reading this that all children with autism have no pain."
I never had pain, but I could use some help with anxiety.  I think anxiety is often misinterpreted as "pain".  I don't think parents are lying, but I do think many parents misinterpret anxiety as pain.
I use to scream, not from pain but from anxiety.  I also, according to my mom, use to put my own poop on the walls, bathroom towels, and just about everything else.  I think it was because I thought it normal to scratch down there and I guess I didn't like that stuff on my hands.  Who knows.  One day, don't remember when, I just stopped doing those things and started to go to the bathroom and wipe again and flush.  Who the heck knows why I did what I did or when it happened.  I do remember that my cubby at school had several changes of clothes.  I can remember this because I use to love Scooby Doo.  I remember being particularly upset at not having my Scooby Doo shirt one time.  I remember my aid saying that my mom forgot to pack it.  I spent the rest of the day with the resource officer and we had fun playing on the playground all day.  I must have been kicked out of class that day.

Wonderful post, Kristina!  So glad to see you still blogging.  I got a little worried when your posts on AutismVox stopped!

Robert, thanks for contributing your thoughts. My son also has anxiety and we started him on an anti-anxiety med to help him with it. The change has been phenomenal. He was always a happy guy, but now it's also easier for him to deal with transitions. For what it's worth, he was also a poop smearer and then once he potty trained he stopped. I really appreciate hearing what you have to say, and boy do I agree with you regarding the fact that focusing on causation is distracting to actually seeing who a person is and what they need.

Kerry,
I think that's great.  Many "experts" don't understand that anxiety is a cause for many of the issues autistics face.  I'm all for meds if they help with anxiety.  There should be a cure for anxiety and that is certainly something I would support 100%.  Some autistics in my support group have a worse case of anxiety than I do and they too wish they could be cured of this.  I think parents should be required at diagnosis to go to an adult autistic support group in their area to learn about the issues facing autistics.  

I've been in my current support group for 6 years.  Each year, a younger generation joins.  Unlike me, some were diagnosed with autistic disorder in childhood.  Depression and suicide are big topics in the group.  Most attribute these feelings to low self esteem, joblessness (still living with mom and dad), feelings of inadequacy  and they have mixed emotions about "Autism Awareness".  Some see it as good and some see it as bad while others see it as both.  The topic of causation never comes up in my group.

Oops, I should have wrote 3 years in my support group, not 6.

well.. kerry... my son is older and I have been doing this for years... and talking to parents and reading about issues they have... it is a variation on a theme... everyone of us say the same thing. sensory issues.. gut... bowel.. mystery rashes... food allergies... all the same.. and mostly after some sort of vaccine. people can continue to look for the genetic cause.. I guarrantee... it will be impossible to find... leo kanner's original 11 patients were exposed to mercury or their parents worked with some type of toxin. Lia

Lia, would be happy to extend an invite to you to my Autistic Support Group if your interested.  I think there are at least 4 guys there with an autistic disorder diagnosis.  

Dan Olmstead is not a reliable source of information about autism, which is where that "information" (Kanner's original subjects, not patients) came from.  Dan is a paid "journalist" by Generation Rescue, an anti-vax organization.
Lia, would you be interested in attending an autistic support group meeting?

I think we ought to be a bit careful about noting that anyone else is "misleading" any one else-----in the spirit of discussion and of writing in a public forum, we're all here to contribute and it's up to each of us to reflect and discern.

Hi Kristina,
I want to echo your admonition, but at the same time, I'd like this to be a safe place for the "autism is environmental folks" to engage the broader autism/autistic community.   This may be their only opportunity/forum to talk with autistic people away from the judgmental eyes of their typical online community.  I think its important that these folks get to know autistic adults, where their child will reside at some point, whether self advocates or not.  

Lia, your comments seem to be right in line with other parents I've met: you've done "research" on a subject and talked to lots of people, so you must be right. It's ridiculously arrogant, not to mention rather tedious to respond to.

But in the spirit of things, let me offer to you my son as a counterexample: no gut/bowel issues, no "mystery rashes" (whatever that's supposed to mean), and no food allergies. He has had low iron (the developmental pediatrician who diagnosed him suggested a ferritin test long before we had our first visit), but we haven't seen any substantial behavioral or cognitive improvements since putting him on an iron supplement (and his iron levels have increased). (I can't even take your "sensory issues" seriously - that's a stereotypical commonality with ASD, and it proves nothing.) Of course, I have no confidence that you will take this as evidence against your claim at all since you've "been doing this for years."

Hi.. and thanks for the invite to join.. just let me know how. sensory issues? are you kidding me? sound and taste sensitivies. and tactile issues? my son would cover his ears and run from the vacume cleaner... Dr. Temple Grandin talks about her sensory issues... the tactile defensiveness that drove her nuts... the pain of sound... right... anyway...you are right..we parents all got together and devised a way to cause the biggest debate in history.. we got together to "lie" about gut.. bowel and other issues and we got together to "lie" about our kids showing improvements. Right.. you have us all figured out. I am just here to say... let those who believe in biomedical and that ASD is caused by toxins in vaccines have a fair say here. Dr. Chew is trying to establish a mindset on this blog. If people want to believe it is genetic...fine.. they can keep their heads in the sand. But wake up... too many parents,see the same issues in their kids and want to do something about it. As we parents find and search for the biomedical cocktail that helps our kids.. dr. chew searches for the education that will help her son.. how many times have you moved, dr, chew? just a thought.. Lia

Different place, same misunderstandings. *sigh*

Acceptance does not, repeat does not, mean doing nothing or accepting the status quo. It means (to me) acceptance of they way your child develops and learns and working with that. It means accepting that that 'way' is led by their autism.

It does not mean any parent consigns their child to the dustbin of history and to infer so is demeaning and wrong.

Lia, the question: do vaccines cause autism is one of science. The ramblings of Dan Olmsted are not science. You find science here http://www.pubmed.gov.

So far, despite over 10 years of looking, there is no science that evidences that vaccines, any component of vaccines or any vaccine schedule cause autism.

Likewise, there is no science that establishes a correlation between gastric issues and autism. You and your friends on the internet talking about it does not establish a correlation.

No one suggests you are lieing about your childs medical issues. You are just correlating them with autism without any evidence to back that up.

And whilst you are searching for that 'biomedical cocktail' what harm might you be causing to your child?Are you really so confident of using the drugs manufactured by the same pharma that manufacture vaccines in ways they were never intended to be used? Why?

I am feeling good now.  I just wanted to add for every individual in this world there is the positive and negative whether Autistic or Neurotypical.  We must always look at both and determine how we can use the positive to outweigh the negative. There is always a way.

Great Post Kristina!

Jason

Kev,
Even after Simpsonwood, with the deliberate hiding of the link with thimerosal, and the subsequent whitewash by Verstraeten  of his findings (and accepting a job with one of the vaccine mfgrs), do you really trust the Establishment's studies that much?  Do you REALLY think, with all that is at risk for them in the matter, that they are going to print the truth, the whole truth, and nothing but the truth?  And do you really think that all of the material that IS available, evidencing a link with vaccines, is all just nonsense??
I really don't think you have a totally open mind in this matter, Kev.  Stay there if you want.  But it's not a sign of maturity.  Nor are postings from your camp followers calling people like Dr Stoller "quacks", and what they say as "rubbish", and such outright rejection of information.  Let's have a more mature discussion of this matter than that.  Or we're wasting each others' time.
If you're game for a decent discussion: what do you think of the work of Dr Richard Deth?  Or Dr Jill James?  Or Dr Burbacher?  Or Dr Russell L. Blaylock?  Or Prof Haley?  Or...or....or.....
...and  if you say it's all "rubbish", don't bother to look for a reply from me.  I really couldn't be bothered to engage with someone who doesn't want to.  But if someone else on this thread wants to have a legitimate dialogue, let's get to it.  But let's stop this silly name-calling.  The subject is too important for cheap ad hominem attacks.     

ok..so show me the great genetic research to BACK YOUR CLAIM that autism is genetic... there is none.. just speculations.. lia

Please take causation/conspiracy fights somewhere else.  Can't there be one place without parents fighting over one theory or another?  Why don't you guys talk about what's worked for you in an IEP, or tell us something you like about the autistic person in your life, or what you would like for accommodations in your area of the country.  

@Jason, glad you are feeling better----always good to know what you think.
Regarding the genetics of autism, there've been a number of studies published recenrly, from Michael Wigler's work on de novo (spontaneous) mutations
http://www.autismvox.com/a-unified-theory-of-autism/

to that about the deletion or a duplication of a section of chromosome 16
http://www.autismvox.com/like-father-like-son/

and more.

 What we are inheriting is a genetic tendency to be unable to handle the toxins in the modern environment, the injected ones,  the MSG and glutamate in foods, and the mercury from coal burning plants and toxins from other sources. It remains to be seen if ANYONE can become autistic if exposed to enough but maybe so. But genetics would explain why only some Kids living in the same envionment who get the same injections become autistic and others just become ADD or depressed or come out as far as we can tell completely OK. But they gave the same Macaque Monkey they use to test the safety of individual vaccines ALL of them the way we do our children and the result was Monkeys with autistic like behaviors and the same kind of painful gut problems many of us autistics have. Yes we don't all have them as one person mentioned above, but I sure do! :(( And I like my brain for the most part, but I want my gut cured.http://www.ageofautism.com/2008/05/sick-monkeys-st.html

I don't think our "taking sides" in a debate about recovery or neurodiversity is helpful. We probably become deeply committed to one or the other so that we can put our our feelings into some kind of action. It seems to me that there is amble room for all of us dealing with developmental problems.

The following is my personal opinion based on my experiences for the last seven years working with children with developmental problems. I am not medical. I approach developmental problems with a 40+ years background in Anthropology, Educational Counseling, Linguistics, electronics, and computer systems theory.

About "Recovery":

My guess is that we are not seeing case studies of recovered autistic children because "recovered" would give us a new set of problems to deal with. These children who are "recovered" have dramatically changed, but they have not yet developmentally caught up with their peers.

Autism is a developmental problem. When a child has a sluggish or stuck developmental process, many things cease to accumulate and build for that child. When you re-engage the developmental process the child can start developing again. But, what is needed for that child to catch-up with peers?

This is truly significant with teenagers. All of those years in which physical and social skills are normally developed are lost and gone. With the developmental process re-engaged, how does a teenager recover all those lost experiences for earlier childhood?

Genetic Markers:

If someone has the genetic markers which are linked to developmental problems, and their system is stressed, they will start reacting to even mundane things. When they pass over their own personal system's stress threshold, they start reacting to a variety of environmental factors which might (or might not) be on someon'e list (diet), but each child has a unique set of factors to which they respond.

The Immune System Response:

After passing the stress threshold, when the sensitive child's immune system thinks that it is being attacked by some 'toxin,' it mounts a immune response. This immune response is designed to temporarily protect the child until the temporary attack has passed. Part of this response is to shut down certain processes which are not needed for survival today. One of the main areas which gets shut down is a set of brain circuits which drive and  manage the developmental process.

Our modern world provides us with ample factors to which these sensitive children will have this immune response. But, it is not temporary. Those factors to which the child reacts continue. So, this immune response which is supposed to be temporary continues indefinitely.

The Result:

This means that the child's developmental process gets shut down (often there is regression, too) as long as those environmental factors to which the child is sensitive remain in the child's environment.

The child's immune system is deciding what it reacts to. This means that a biological or chemical lab will not be able to accurately predict what children will be reacting to. Lists are not a good solution, because each child's menu of environmental factors to which the child reacts is unique and personal.

There are many areas where we can be placing our efforts to with respect to developmental problems.

The Neurodiversity movement is committed to improving the quality of life for the children. I certainly cannot find fault with that focus. But, most of the energy for this movement comes from recognizing there is little recovery possible and we should be putting our energy into improving quality of life for these children and adults.

Recent advances show us that actual recovery (from the immune response) is possible. But, it is not rooted in symptoms, diagnoses, medicine, psychology. It is much more focused around understanding the nature of the sensitivity these children have and cleaning their environment of those things to which the child reacts.

It also need to to include programs for encouraging and growing those circuits which control the developmental process (which have been stunted by that immune response).

And it needs programs which are designed to help this 'recovered' child grow up and catch-up with peers. Most of the educational and training programs (which I have seen) for children with severe developmental problems are based on assumptions about teaching everything possible to a child who cannot learn. New programs need to be developed which are based on the assumption that this child can learn and needs t catch-up developmentally.

Overview:

From what I see, the pieces are falling into place for true recovery for these children with developmental problems to be possible. Most of the developers/practitioners in this field have staked out an area of specialization and are rarely looking at the big picture. So, they are confident that what they do is the answer, and they are missing that their approach could be part of a solution.

Few are recognizing the pivital role that this sensitivity (intolerance) and the resulting immune response is the key to what has happened and the key to successful recovery. The biomedical approach, which shows promise as part of the recovery mix, does not recognize that children might not be helped by their approach because they are sensitive and react to the treatment itself.

A broader understanding of the sensitivities, processes, and these responses will get us much further than research into the thing the child is reacting to.

@Rodger Bailey,Thanks----may I ask how you came to be interested in autism? Have you noted the responses that you detail in autistic children or older individuals? 

I don't think that it's necessary for people to "take sides," so much as to consider other ways of thinking about autism, about "treatment," about teaching, and so forth-----about possible gray areas. Some say that it's just not possible for everyone to ever come to consensus and that may be the case, but I'm always glad for discussion and, too, for any of my own views to be questioned and critiqued. In our life with our son Charlie, one thing I've often learned is to be very careful about assumptions, and to keep questioning everything, and to keep his needs and his person at the center of it all.

Excellent comment at 8:07am 1/05, Kristina.  Thanks for letting me/us know where more precisely you are coming from.  When I heard (& then saw it for myself) that you had said, "Recovery from autism is neither possible, nor desirable," I had a gut reaction (fortunately, for me, not lasting).  But I totally resonate with this 1/05 comment of yours.  Indeed, we all need to keep our minds open in this matter, as we proceed with what we feel about it at the moment. 
And I also take Robert Adams' point (at 5:38pm 1/04) about not getting hung up on just the causation debate.  Indeed, more attention needs to be given to sufficient services and support for these kids, and what works, and what doesn't for the individual involved. I 'get' that that's one of the main points of this particular blog.  Consider that acknowledgment made.    

@Stan, thank you and hope you will keep reading and letting us know what you think.  I have a very good friend whose son is almost the same age as my son. He has done numerous biomedical treatments (and lots and lots of ABA and much, much else) and it's when vaccines and causes come up that a big divider seems to slam down on our friendship. I've my opinions on certain topics, but I think it's the case that she and I value our friendship much more, and the sense that we've known each other for several years, and have known each others' boys.  Many regards-----

Stan - I don't buy into the so-called Simpsonwood conspiracy, sorry. In fact iconsiderit one of the great 'myths' of autism:

http://autism-myths.org/2008/09/the-simpsonwood-conspiracy/

Same as the myth that the Verstraten papers 'hid' a connection:

http://autism-myths.org/2008/09/the-verstraten-paper/

I'm also not impressed with claims that 'the establishment' are stacking the deck. Sorry. Good science, by its very nature is independant. How? Because good science is replicable. This means that anyone, anywhere can repeat the experiment. If people want to stack the deck in their favour they hide their methods, publish in non peer reviewed journals and are generally bad scientists.

You then name a few scientists you believe support the link between autism and vaccines.

Dr Richard Deth, Dr Jill James, Dr Burbacher, Dr Russell L. Blaylock, Prof Haley. I'll start with the last.

In 2006 Haley was slated as an expert witness in a rhogam hearing. He was exluded from being able to give testimony because (http://leftbrainrightbrain.co.uk/?p=393):

"The court…finds that Dr. Haley’s report does not state an expert opinion that thimerosal causes autism, rather just that he has a theory about how such a thing could happen. At best, he expressed “strong belief” that the cause of “neurodevelopmental disorders in infants” is exposure to an organic-mercury compound such as thimerosal"

So - lets not name names, lets discuss whats at the heart of the matter - journal published, peer reviewed (and thus independant) science.

Lia - assuming that your last comment was for me, i don't recall stating that autism was purely genetic. I just don't believe it is in any way related to vaccines.

As for where there is evidence of a genetic links to autism, please try here:

http://www.geneticautism.org which has a comprehensive database over the many gene/allele and/or chromosome region linkages.

I have an honest question for some on this board. For those who say the cause is genetic OR environment, must it really be an either/or situation? One post did state that it's likelky both, a genetic susceptibility to certain environmental triggers. And in all likelihood there are many different triggers that only affect some and not others. And some might just be plain genetic. I have known autistics that were NEVER vaccinated.

On a completely different note, to those who earlier commented on the issues with anxiety and autism, in my years working with young autistics I found yoga and breathing exercises to be HIGHLY beneficial for dealing with anxiety. The children who learned how to do yogic breathing properly ALL started doing it independently because they realized it made them feel better. It was a wonderful thing!

Namaste,
Rachel

I agree Rachel, I don't think its either/or too. I think its mostly genetic with (in some cases) an environmental component.

Lets not forget though that Rett Syndrome is 100% genetic and is also a type of autism. Lets also not forget that one of the very very few known causes of autism is Rubella - purely environmental.

My son has lost an ASD diagnosis.  He showed dramatic improvement via GFCF, Feingold, numerous supplements including mb12 shots, and changing all the cleaning products we used in the home.  We started all this simultaneously when he was almost 5.  Immediately prior, we took him to Dr Bryan Jepson at Thoughtful House in Austin Texas and learned his bowels were impacted.  My son didn't talk much at the time, but after he clogged the toilet from everything I gave him I remember he said very clearly, "Thanks for getting all that poop out of me, Mom."  It broke my heart, he'd been in pain his whole life and DIDN'T KNOW TO TELL ME.  It was all he knew.

Fast forward a couple years, I finally had a porphyrin test done and it showed he had significant mercury toxicity.  I had been afraid of IV chelation, just like any normal parent would be given reports of children dieing from it.  However, I researched it and learned the kids harmed had been chelated with the wrong agents.  We did some transdermal chelation, and it helped, but we knew IV chelation was the preferred method.  We finally broke down and did it and in a few months, the changes in my son were marked.  I think other parents need to know that my seven year old son WANTED to go get his IVs, which he received every  other week.  He said they made him feel better.  He expressed regret the one day (it was summertime) that he was too dehydrated to get his IV.  HE chose to let the doctor try on his second of his arm when attempts on his first arm failed.

My son is now a happy second grader in his school's gifted program.  He tested well in to the gifted range on a non-verbal IQ test.  He still lags a little socially, but is well within the normal range.  His sense of humor is keen and he is very sensitive to the needs and feelings of others. We never did any ABA.  We still do a little speech, he did get some OT.  We still maintain the diet mostly ( I admit we cheat and use extra enzymes sometimes ) and we still give lots of supplements.  No more IVs.

There may be some genetic elements to this epidemic, but by definition there cannot be a genetic epidemic.  There are also environmental factors, I am sure of it.

I hope for Charlie the very best.

@Diana, thanks for writing about your son; sounds like he is doing very well. If I may ask, was he always able to speak?  I've a slightly different view about the notion of autism as an "epidemic" ----regardless, it's certainly good to be able to share stories about other children, and other families who have been through a lot. Very  best wishes ------

Hello -

Your comment is almost as perplexing to me as your question.  *smile*

I don't know what 'always' able to speak' means.  I can tell you that at 18 months his delays were first diagnosed.  He was not speaking five words at that time.  His comment to me when he was five was very, very unusual both because he did not often speak and he did not often string so many words together when he did. 

I cannot understand how autism is anything less than an epidemic.  I reject the notion that there are just better diagnostics or that people are more willing to bring their disabled family members into the public eye.  Perhaps our backgrounds differ?  I have always lived in the United States and in my experience, now as an adult I am aware of more autistic children than I was ever aware of any other type of disabled people combined - and this is not only combining all other disabilities but it is also combining my other stages of life, child, teen, young adult.  Anecdotal, I'm sure that will be the argument to this unscientific assessment, but I've developed a somewhat jaded eye due to the financial resources (and accompanying motives)  required for so-called scientific data. 

"Parentdotal" evidence has earned my trust.  Had I listened to our pediatrician - who advised strenously against the bio-medical path upon which we embarked - my child would still be in pain and unable to communicate.  What horror!  ( I have to say, in just four months, that pediatrician was shocked at the changes in my son - his jaw hit the floor when he walked in and he asked "what have you done to this child"  the answer was, of course, that I had done the opposite of what he had recommended - and this was only in reference to the GFCF, he knew nothing about the other biomedical things we did so he did not advise against them though I am certain he would have.  He was a very good pediatrician, I must add.  He first diagnosed delays at 18 months, we were lucky in that regard.  I looked him up recently, he is now specializing in emergency pediatric medicine and I have an idea why he changed his practice.  At the appointment where he was shocked, he told me, "you have my underhanded approval to continue biomedical interventions" as if it were some kind of doctor violation to endorse biomedical.  I found it odd at the very least.  It was also a surreal experience to find yourself educating your doctor as it was clear the notes he was taking were for more than just my child's chart.  And, like I said, he was a very good pediatrician and he very soon thereafter changed his practice entirely.  I suspect he didn't want to continue giving vaccinations, but I will never know for sure. I want to add that our experiences with OT and speech were very underwhelming until we started biomedical.  (Also, i want to make clear that I am not affiliated with Dr. J in any way, I do however feel indebted to him because his expertise made the difference for us and I would be comfortable encouraging other parents to seek his help.  We moved between seeing Dr J and getting chelation therapy, that was administered where we live now.)

However, I know not all children respond to biomedical interventions and if your child is one of those children, I feel for you.  I have some friends who have children who are not improving despite their efforts with biomedical and ABA, etc.  Luckily, if those children are experiencing pain, they are giving no outward appearances of having pain.  ( my son used to apply pressure to his belly, hanging off the sofa and so forth ).  The few friends I have with children who are not improving with biomedical do have genetic backgrounds that may be more susceptible to autism.  I have many more friends who have children who are getting better from biomedical interventions.  Several have lost diagnoses altogether, and, like my son, are indistinguishable from their peers.  Most are making steady improvements in their abiliity to communicate, etc, but more importantly they seem to be in less pain. 

I feel the pain of the mothers whose kids are not improving - at what point do you just say, "forget it, biomedical doesn't work for us, our money is better spent caring for this child's future".  That is a very valid point, and a choice I am so thankful I did not have to make.  Everything we did was expensive.  Insurance paid for almost nothing.

I hope that you did not merely have bad DAN doctors or incorrect lab results.  You mentioned no interest in chelation due to some reference to diflucan?  I have never heard of that as a chelator, I never used it but I know knowledgable mothers who have used it but now I'm embarrassed to forget what for (viral load?).  Chelators I am aware of are DMPS, DMSA, EDTA, and ALA.  Charlie is your son, certainly your mother's intution is paramount, if you believe that the best thing is to abandon biomedical then I would not doubt you.  However, if you have any doubts, I will be happy to help you in any way I can.  And, certainly I have to disagree wholeheartedly that biomedical interventions should not be tried by anyone.
 
I think it is important to say that the aim of parents embarking upon biomedical interventions have the goal of having healthy children.  It is not a goal to change who they are.  I know many autistic adults are very offended by the biomedical movement.  They shouldn't be because parents trying to heal their children would be thrilled to have their kids grow up and be able to communicate that they were offended, and to be offended in the first place.  Whatever 'autism' these adults have, it is not the same 'autism' that parents are trying to heal.  Parents just want their children to not be in pain and to be able to communicate.

@Diana Schaffer on 01/05/2009 @ 09:21PM PST
Thanks for your post about your son. Your experiences match much of what we have learned working with the whole range of developmental problems (from ADHD, LD, APD, GDD, & FTT to ASD). When we can reduce the environmental factors to which the child is reacting, the normal developmental process re-engages and attempts to proceed normally. As long as you continue to control those factors to which your child reacts, the developmental process continues to advance.
Having the genetic markers seems to mean a susceptibility (an extra level of sensitivity or intolerance) with respect to factors in the environment. As far as I can tell, there is no genetic marker about sensitivity to wheat or gluten or mercury or whatever. Those genetic markers simply indicate more sensitivity to something.
Recent research is showing us that having a certain genetic marker does not define how our body manifests that marker. Responses to environmental factors seems to determine how that particular gene manifests. So, different people with the same genetic marker can manifest differently based on the environmental factors to which the person has contact.
All of us are sensitive to certain things in our environment. Thirty years ago, I discovered that I reacted badly to deodorant 'soap' and I would get a rash if I used any of them. So, I stopped using them and the rashes stopped. Some of us are more susceptible to insect bites or stings than others. We all have things to which we are sensitive. Maybe with more research we will learn more about the ranges of sensitivity.
For me, the important thing is to focus on that sensitivity and not on the object of that sensitivity. It would not be a useful discussion for me to blame deodorant 'soap' for all the rashes in the world. It is simply practical that if I react to this kind of soap, I need to stay away from it. I think that is practical advice for everyone.
The same goes for certain materials. For instance, in his old age, my father-in-law became sensitive to plastics and rubber. So, whenever he received medical attention, we had to make sure he was not touched by medical staff with latex or rubber gloves or he would break out in a rash. We had to make sure the blanket and clothes he used was cotton or he would get a rash.
But, our reactions to environmental factors are not limited to rashes. We can react emotionally, behaviorally, mentally, and in our natural processes (such as the developmental process itself).
I certainly don't know the mechanism by which each body decides to react (or not) to a specific environmental factor. I'm convinced that it will not be detected in a petri dish. For me, the direction we need to be looking in our research is not about mercury or wheat (for instance), it is about the mechanisms our bodies use to identify to which factor we are going to be sensitive. I suspect these target factors are not hard-wired for us.
In my experience, when we identify the factors to which a child is reacting and we remove those factors from the child's environment, the child starts having an immediate burst of new developmental tasks being accomplished. In these cases, there is clear evidence that the child's developmental process gets unstuck and starts progressing.
This is most clear for children diagnosed with Failure To Thrive (FTT). We have often worked with 3, 4, and 5 year-old children who have not yet started to walk. Some FTT children are still infants who cannot yet hold up their heads. Others have progressed in some areas, but scoot around on the floor without trying to stand or walk.
“Scooters” are usually quite dramatic in their response to getting their environment 'cleaned up.' They are usually up and walking within a few days. So, it is clear to us that after years of no improvement from modern medical interventions, that determining the child's menu of sensitivities and isolating the child from those factors to which the child is sensitive is the key to getting the developmental process back on track. Ongoing work with these children shows that they catch-up in other areas of their development in addition to these gross motor improvements.
Also, when these children encounter new environmental factors to which they are sensitive (but not discovered in their initial assessment) they can quickly regress back to scooting instead of walking. But when we identify the new 'offending' environmental factor and eliminate it, the child is back on track again within a day or so.
GFCF and Fiengold approaches are on the right track, but (in my opinion) are using the wrong tools to accomplish the task of cleaning the child's environment. We have seen cases where children were reacting to some of the things on the approved diet, so the program did not work for them. Each child has a unique menu of things to which the child reacts. The best approach to achieve a good result from trying to clean the child's environment is an individual assessment to determine each child's menu of environmental factors to which the child reacts.
In your experience with your child, you have had great results and I am so happy for you and all the others who have found something that works for their family. Keep on doing what you are doing.
I suspect that new advances in understanding problems in the developmental process may be focused around these sensitivities.

In my opinion, the biomedical approach is an attempt to remove environmental factors (to which the child is sensitive) from permanent residence in the child's body. I applaud this approach, because it is working on the correct direction (eliminating factors from the child's environment to which the child reacts).

In our experience, many children taking biomedical treatment have a sensitivity to the treatments themselves. I suspect this is a reason it does not work for some children.

I first became interested in autism two years ago when I received a student in my classroom who had autism.  In addition, he was mentally retarded and non-verbal.  I fell in love with this student.  He was much lower functioning than the rest of my students and at first, they were scared of him but they saw the way I interacted with him and they soon fell in love with him too.  I personally believe he is much more intelligent than the school psycholoist suggested. I took a sign language class just so I could communicate with him and was astounded at how quickly he picked it up.  As a current Ph.D. student, I am doing my dissertation on the rising rates of autism.  Like many who have posted here, my research tells me that there is a genetic component for autism.  I personally believe that the environment can ativate this gene but I do not believe the environment "causes" autism.  In terms of the rising rates, because it is a developmental disorder, I also believe that as "professionals" have become more educated about autism and as they have become more aware of its symptoms and characteristics, they are better able to diagnose it now.  In addition, the diagnostic criteria for autism has significantly changed since the term was first introduced by Eugen Blueler in 1911 and then introduced by Leo Kanner is 1943 here in the United States.  Today, autism is classified as "a pervasive developmental disorder (PDD)" but this also includes Asperger's, Rett's Disorder, Childhood Disintegrative Disorder, and PDD Not Otherwise Specified.  Autism itself is a spectrum disorder so you can have those who are very high functioning on one end of the scale and then on the other end are those who are non-verbal, mentally retarded who are classified as "severe" or "profound."

I am very concerned with the diagnostic process and the amount of support and education parents of children with suspected autism receive during the "wait" period.  You stated that your son was diagnosed at age 2.  Do you remember how long you waited to receive a definitive diagnosis?  Did you receive any support during that time?  Were you sent to multiple professionals?  I am focusing on parental stress during the diagnostic and evaluation process.  Someone stated that focusing on the "causation" is a waste of time.  Well, I believe if we can uncover "THE cause" then we can work toward prevention in the future but in the mean time, there are children with autism here.  They have parents who are struggling with how to raise them so they can enjoy a better quality of life.  I had a former professor who was sure that the child with autism is happy in their own world because, as she put it, they know nothing about ours.  I'm not sure that I agree but I would love to hear from parents of children with autism.  I hope to get started with the data collection part of my study within the next few months and would love anyone interested to participate by completing an online survey that basically focuses on the diagnostic and evaluation process, parental stress and frustration, and education from professionals about autism and resources available to them.

Best wishes to Charlie.  He sounds like a wonderful young man.  Your story really makes me miss my former student.  ;  )

Renee
rtrkrswfe@cox.net.

I think it is very important that people understand that no two people are alike, Autism or not, we are all unique individuals. Autism is a spectrum disorder which makes it all the more difficult to compare and understand. I have an Amazing 4 yo boy w/ numerous diagnoses Autistic Spectrum Disorder being one of them. He does not have Regressive Autism (I think making the diagnosis easier to accept) but he did have a reaction to his six week vaccines causing encephalopathy among other things, very long story (he does have a family history of Autoimmune disease which could be a genetic predisposition). We started traditional therapies at 1 yo w/ not much progress after two years we decided to give biomed a try and have had Wonderful results. The Methyl B12 injections gave him his voice and I can't express how great that is! I wish all children responded like my son but the sad truth is they don't. My heart aches for the parents that have tried IT ALL and nothing seems to help. I am sure they really get sick of hearing of the "Recovered" children. Personally I think Autism is life long but some symptoms can be alleviated, to an extent, if the symptoms are caused by biomedical issues. I do think finding a cause is very important as more and more children are being diagnosed and our current system cannot handle the huge number of children with developmental disabilities. But taking care of the needs of persons w/ developmental disabilities should be the top priority!

On genetics, I keep hearing people say that there is no such thing as a genetic epidemic but isn't it possible to cause a genetic epidemic if 80% of the population is vaccinated w/ a vaccine containing altered DNA and then pass it on to their offspring????? Just so you know I don't think vaccines cause Autism but I think in individuals who are genetically predisposed they can be a tipping point or trigger if you will.

I hope that the Autism community can unite to fight for change to help people with Autism get the education they deserve, get therapies they need, to be accommodated, to live life to the fullest with dignity and acceptance!! Isn't that what we all want?

Sonya

Epidemic - what *evidence* is there for an epidemic of autism? Please note I am not saying there definitely has or has not been one, I am asking what evidence is there either way? Scientific evidence I mean.

Diana - I'm glad your son is no longer in pain. However, I am skeptical of some of the things you say. Not that I accuse you of lying. I am just not sure what you say is right.

You mention about 9 different treatments regularly thought of as biomedical. How do you know which (if any) had any effect on your sons *autism* - not his bowels, not his speech but his *autism*?

You mention vitamins as well as chelation. Did you know that at least one autistic child has been hospitalised by a DAN! doctor by taking mega-doses of vitamins? I worry greatly that there is a culture of experimentation and exploitation going on here for no tangible or measurable benefit.

@Diana Schaffer, thanks for writing more about your son-----Charlie did well with the GFCF diet and (as we liked to think) anti-fungal "treatment" (with nystatin, Culturelle/probiotics).  We had some serious reservations, somewhat noted above, about chelation, injections of secretin and the like, though we certainly read a great deal about them, talked with families, met with a DAN! practitioner well-known in northern New Jersey---the sorts of things so many parents and families have done.  
@Sonya O'Brien, Sounds like your son is doing well and hope this continues-----speech therapy, ABA (including verbal behavior) helped my son to talk; physical exercise that built up his muscles and strength also made a big difference.
Regarding there being an "epidemic" of autism----there feels like there is one; certainly there has been a figurative "epidemic" of understanding about autism and discussing autism in public settings. I'll most likely be posting more about the so-called "epidemic," and about there not being one. I've written about this previously at:

http://www.autismvox.com/better-diagnosis-and-so-called-epidemics/
http://www.autismvox.com/what-if-there-is-no-autism-epidemic/

Dignity and acceptance for sure and yes---- 

Awesome point of view, which is what I like about your blogs.
I keep wondering if the attitudes about autism and other disabilities have to change in order to help people a lot more.

That excellent manga comes to mind.

You know, Kristina, every time I have this "recovery vs acceptance" discussion with myself I remember how difficult it is to maneuver the so-called social support system in this country--every bit of help my son has gotten I've had to fight for or do myself -- and so I come back to the idea that the more my son can take care of himself, the better off he'll be.  We don't have much family to fall back on,  so it's a pragmatic decision.  If we can make the pragmatic work with the happy, so much the better. 

Of course, it's difficult to know what to do or how much of it to do when.  It's all a big on-going experiment, one that a parent can feel woefully inadequate to deal with.  Sometimes the right thing to do is to back off; sometimes it's full steam ahead.  Timing is as important as anything.  Time keeps galloping by, so you can't wait for the definitive answer or cure, or the State you live in to understand how to deliver services.   

My son is 22, diagnosed with high functioning autism at 14.  He's in community college with a plan to become a computer programmer.  (We might have to move to India for him to have a job doing that though).  Support services by CLE.          
   

Did any of you or your child experience infantile seizures?
My nephew is autistic and he had infantile seizures after his vaccinations and did not show up on the EEG. His parents video taped his seizures to provide evidence of his seizures. He has had genetic testing and they all came back normal.

"I thought I had to do everything in my power to make it possible for him to not be in special education, to go to college, to live on his own..." These three things are NOT mutually exclusive! I, too, rode the short bus for many years. Eventually, I went to college. Then, I transferred. To Yale. From which I hold a cum laude degree. As for living on my own, I'm in Honolulu. Mom is in New York. 5,000 miles away. That's as "on my own" as I can get without a passport (unless she moves back to New England :-) )

Diana Schaffer wrote:
"Not because neurodiversity is a bad thing, but because a self-supporting life without chronic pain is a good thing."

The two are NOT mutually exclusive.  To say that one must be against a self-supporting life or against relief from chronic pain if one is pro-neurodiversity is a pernicious false dichotomy perpetuated by those who fear empowerment of autistic self-advocates and do not want their hegemony encroached upon.

I'm the parent of an autistic teen, and I'm solidly pro-neurodiversity.  And I think autistic people and others with atypical neurology deserve and should get as high quality *legitimate* medical care as neurologically typical people.  They don't, because all too often their physical ailments are swept under the rug of "it's part of the autism" and either not taken seriously, or inappropriately treated with quack autism "treatments" rather than legitimate medical care.

The pseudoscience and celebrity media-campaigns of those who misguidedly believe vaccines have anything to do with autism HINDER, not help, getting autistic people the appropriate *legitimate* medical care they deserve.  As do the charlatans who make money off the ensuing FUD -- fear, uncertainty, and doubt.

Phil, please don't misunderstand me.  I was merely trying to point out that I am not anti-pro-neurodiversity.  I agree that symptoms should be treated and not written off as 'part of autism'.  I was shocked to hear a parent I know say that a GI doctor actually said that to her in refusing her son treatment.  I am sorry to hear that parents actually hear these comments from doctors.  That seems to me like showing up at the scene of a car wreck and saying, "yep, car wrecks cause bleeding - no treatment necessary." Not only do I agree with you, I wonder if the GI problems are a CAUSE of the autism.

Kev asked which treatment affected my son's autism.  I have been wondering exactly which part was his autism.

@Kathy Reece, my son did not have infantile seizures. He was tested for Fragile X and he does not have it.

@Mark Romoser, Honolulu sounds good (especially on this icy, wet, gray morning in New Jersey.......).

@Theodora Sobin, moving to India----far farther than we've ever had to travel!   Here in New Jersey---though my husband's family is from here, and where we've found a good school district for Charlie---we don't really have any help and it is pretty much Jim and me. I like very much your saying that figuring out what to do is a bit of an "on-going experiment"---that has been very much our experience.

I've been biting my tongue, because I want to honor the feeling of some not to get up hung up on 'causality' issues here.  This thread has helped me understand why the anger/resistance of the 'ND' crowd towards those 'harping on' about 'cures' and biomeds.  My thanks for that larger perspective on the matter.  (I used to think that it was simple ignorance.  I have been disabused of that notion.)
But we at least need to listen to each other.  For Kev and Phil, for two examples, to say and keep insisting that vaccines have nothing whatsoever to do with autism is erroneous.  Respectfully, may I repeat from earlier on in this thread:
(1) The genes - strike that; at least some of the autism genes that have been discovered code for glutamate (= synapse formation).  
(2) Glutamate is an 'excitotoxin' - a neurotoxin -  and thus needs to be eliminated from the environment of someone who can now be identified (biomarkers) with the autism genes (however those genes got formed, which is another matter).       Glutamate is present in the diet (esp. high in wheat & dairy, & thus in part the value of a GF/CF diet; in MSG; in hydrolyzed soy products; in aspartame,  etc) - and is also present in some vaccines; some of which also have mercury and/or aluminum in them, and thus a case of double jeopardy: because not only is glutamate an excitotoxin in its own right (& thus enhancing the inflammatory action of the vaccine(s), in stimulating antibodies to the vax ingredients), but it lowers the levels of glutathione, which is the substance that binds with & eliminates heavy metals from the system.     And speaking of glutathione:  
(3) It has also been found to be low in children with ASD; apparently from a genetic polymorphism, but also possibly from working 'overtime' to chelate the heavy metals in the system.  Which can come from fish, coal-fired power plants, dental amalgam fillings into the foetus or via breastfeeding into the infant, etc, but as well INCLUDING VACCINES.     (Yes, aluminum is in foods etc as well; but in vaccines it comes packaged in an inflammatory setting to start with.  And injected rather than ingested is a different matter to the immune system.)
So we are talking about both/and: both genetics and environment; and in that environmental factor, vaccines are a key component, because they set up an inflammatory response in the body by their very nature, even before we look at these confounding genetic factors.  Vaccines need to be made safer; and children with biomarkers for ASD susceptibility need to be treated with that awareness, environmentally; especially via diet, but not exclusively.  And as Diana says, it can be a matter of combinations of factors, not just isolated ones.
And now I'm done making this case, and will continue to listen carefully to the 'other' point of view in this dialogue, ie, the case for more attention to be paid to the education needs of children on the spectrum, and their housing, employment opportunities, etc.  Definitely a legitimate argument. 

@Stan, I think it's convenient, but limiting, to speak of an "ND" camp. Truly, I think we all ultimately are in that "camp," in so far as we love and accept our children as they are, for what they are; as individuals, none without differences.
Having written a post about most every hypothetical cause you list on Autism Vox, as well as about the hypothetical vaccine-autism link and the numerous studies refuting it----I do think that the constant return to the one topic of causation has become consuming it and of itself. I know it's the subject of ongoing study; we know that the prevalence rate of autism is rising and that the DSM criteria are being revised; we also know that measles and other infectious diseases have been on the rise, due to parents choosing not to vaccinate a child because of fear of the hypothetical vaccine-autism link.  We've been fortunate to live at a time when the possibility of providing appropriate services and supports for individuals of all ages across the autism spectrum is possible, and I hope we can fulfill that possibility.

see this page which talks about the GAPS diet to treat autism
http://www.sustainlane.com/reviews/the-gaps-diet-the-mother-of-all-diets/LTVKD7QC3RN23RUSRVX2DXV3R98X

@KC: the "vaccine-autism" fuax link you mention is discussed in the above link i posted. cheers.

@KC: Did you know? I once lived in Jersey City! I ran the multimedia lab at a school in Manhattan that serves mostly kids with autism. Since it was right near PATH, I figured, "Why try to find an apartment in NYC?" And so, off to Journal Square I went.

Are you at New Jersey City U. or St. Peter's? (somehow I doubt that HCCC has a Virgil translator on faculty...)

@Mark Romoser,
At SPC, down Kennedy Blvd---we're at Journal Square all the time to catch the PATH to New York. By next week (as I start teaching) there may be more than a few references here to a few classical matters.........

Hi Kristina,

I love your article.  Thank you for writing it.
Re: autism wars (interesting metaphor)
My favorite saying these days is "Different strokes for different folks at different times"

I know, for some people, the "recovery" thing really works.

For others, it seems to just not fit (and that's been my experience too - except in a different situation).  When I read your words, e.g.  "I've come to think that focusing on recovery distracted me from truly helping Charlie and truly understanding Charlie", I get the sense of having arrived at a very peaceful and wise place.

I love what you said about Obama's plan to empower people with disabilities and your wish for a "world free of unnecessary barriers, stereotypes, and discrimination".

All my best to you and Charlie,
Dori

@ Kev all these problems that Diane(?) cured her son of are part of autism. You really need to do more research. I have 2 autistic sons that I am trying to help, my youngest doesn't need as much help as does my oldest. I am looking into the biomedical treatment for them. Biomedical is herbal and you do not have to go through the pharmacy companies to get them. It is people like you that think only you are right and evertone else is wrong that are the problem with this world. I know that I am new to this group and I don't want to upset anyone and step on their toes, but shouldn't we be supporting one another, not arguing amongst ourselves. If people are truely trying to help this cause by joining it then we need to rally together to get things accomplished.

Ken Kev,

Once your loved one is struck with autism your whole stance will change.

I remember that I couldn't wait till my children get vaccinated out of fear that,they will contract a "deadly" disease like Hepatitis B or Polio or Tetanus etc.  I was so glad when pediatrician gave our children vaccines, it made me feel save.  Nevermind that Our insurance didn't cover vaccines because our pediatrician was not pre-authorized.

Anyhow, you defent vaccines without even thinking that ONE SIZE DOES NOT FIT ALL when it comes to vaccines or anything in particular.

Heck you'll even find someone allergic to Apples, let alone toxic chemicals in vaccines.

Even most doctors feel is totally unnecessary to Vaccinate against HepB but they do it because they'll loose their licenses if they do otherwise.  HepB affects prostitutes and drug users not average americans, especially children who don't even know what prostitution or drugs are.  The mandate to Vaccinate againt HEPB is nothing but a fund raiser.  There is a simple Blood test to test the Mother and then, I don't know what good that could do since the baby has been inside the mother for 9 months, then the Vaccine is recommended.

Why is it safe to vaccinate with 5 "diseases" at the same time, but its not safe to vaccinate when child has cold.

I bet you also think that FLUORIDE is good for you, you probably never looked into what FLUORIDE Is and since your body doesn't use it... well deny it but lookup MSDS sheets and you'll know.

If you also look hard enough You'll find patents with Fluoride as insecticide or RAT POISON.  Now just agree its for your good teeth.

The idea of putting fluoride in water so it can help your teeth is like idea of drinking suncreen to prevent sunburn.  How is your body to know to put only fluoride in your teeth.  Dental FLUOROSIS affects every bone in your body, also THYROID, BRAIN ETC.

I was reading the different suggestions and comments. There is a lot of great ideas. Autism is complex. I just wanted to share what I found was helpful in our situation.

 My 25 year old son has outgrown his autism(no longer meets the DSM4 definition of Childhood Disintegration Disorder). I think some of the most helpful things were to treat him like a normal person. Life improved a lot at home. There is a discontinued web site by adult autistics who don't want to be badgered by too many questions from us parents. They would like to be seen as being OK. 

Having used many therapies I would recommend alternative schools that teach hands on, multisensory learning(touch math, cuisinarie rods, "Recipe for Reading", Inspiration/Kidspiration software, Atlantis Wordprocessing for computer learning etc) especially "fun" typing which keeps the parent out of the homework loop. The computer checks the work and there is less steps used in the writing process. There is a whole curriculum in the back of "Let Me Hear Your Voice" book by Catherine Maurice. Temple Grandin books(see and hear autistic thoughts) are helpful in learning how to talk to your child.

Autism affects most parts of the brain. Getting your child evaluated in areas of processing information in the brain such Speech Therapy (auditory processing, social communication, articulation), Visual Processing, Occupational Therapy(nervous system integration) would help you understand the challenges the child faces. Hippo therapy(a therapist horse back riding  therapy) is an easy, effective way to do OT.  Make sure on your IEP's that your child is tested also for perceptual skills (brain processing information) not just academic skills. The preceptual tests pinpoint the learning problems.  Biofeedback targeting the frontal lobe(right forehead) can improve emotions and executive planning(planning/executing tasks), Memory. My child's brainwaves went from theta (light sleep) 1-2 to 32 per minute with right and left side of brain interacting(staircase). This means that the correct side of the brain is doing the correct task. Brain works more efficiently. He now had Beta Waves which meant being able to learn in a classroom. No more putting his head on the desk. Taking out the garbage at age 12 without help was priceless. Karate helps with handwriting, motor coordination and feeling that they are not vulnerable in the world.   Using preschool/kindergarden ready workbooks you could evaluate many of these sensory areas yourself. There are exercises(The Thinking Company) to improve advance thinking skills (abstract thinking which is needed 6-12th grades). These exercises deal with categories, sequencing etc.-all the elements involved in learning.

Spend the years trying to figure out what talents the child has. Then find ways to develop those talents into a adult job. We hired private artists to teach him. He graduated from college with an animation degree.

 My other son works with a 19 year old autistic person. The biggest challenge is the advance thinking skills and executive command(independently getting things done). My other son has to break down tasks into cards with time limits on each card so "Patrick" can remain focus and not frustrated. Also the cards are effective because it is more effective to show than talk to an autistic person. Both sides can remain cool instead of frustrated. Patrick is a self-taught software programmer and doesn't write code like my other son. At first Patrick was resistant to change and also right brain. Patrick is now starting to to see the BIG PICTURE rather than thinking in terms of PARTS and using his gifts of a different wired brain. The job is beginning to make sense.  He had to move home so his parents could get him on time for work. Obviously working with Patrick is frustrating and time consumming. My other son has high expectations for Patrick. It is important to treat him like everyone else.  Patrick is lucky to be at a job runned by right brain people. Patrick is in an office corner cut off from all the noise/people and only interacts with my son. At first the environment was overstimulating for Patrick.

We did alot with behavior. Robert Koegel from UC Santa Barbara(Understanding Why Problem Behaviors Occur) has these cheap booklets from his clinic which teach behavior and skills. Experts in the field say behavior is communication. The child needs to feel liked(trust) by the people around him; parent vocalizes in words what the child is unable to say("Are you upset?" which helps with self-inflicted pain); parent whispers when they want the child to pay attention. These help with behavior. Knowing what triggered the behavior and what the child gets out of the behavior(how the child acts afterwards) you can substitute bad behaviors for good ones. Hiring teens to parallel play with your child or take your child out in the community or giving your child money to buy fast food in an empty restaurant are ways to build social skills. His friend was in another room at first. Eventually my son starting playing next to him in the same room AND caught up on his play skills.  All it cost me was pizza and soda.

We didn't get to do everything- too many challenges. We were lucky that his college taught our son work behaviors. Sometimes unexpected opportunities occur such as having neat freak male roommates. They had weekly meetings to make sure the rules were enforced. No parent or child can do everything. Sometimes we luck out connecting with other people. I think it is important to treat our children like they are like everyone else.  Also as my daughter taught me, "Mom, your are so involved that you miss out on the little, good things in life."

Just like one of the previous writers I was frustrated at the fragmentation of services for autistic children. I forgot to mention that the people you meet are specialists. They only know their one area of expertise. I had to be my child's case manager and keep everyone involved informed. Writing information in a short report was helpful to introduce my child to the new professional. I would always ask people I met if they knew of any other resources. For years I would hear that my child was the worse they had ever seen. Eventually he wasn't the lowest. I read alot and kept putting the same key words on the search engine. I also ask the professionals for suggested books. Dr. Levine (Learning Disability ped doctor) has some great books on strategies to overcome learning disabilities that explain the principles of how people learn (category, sequencing, memory, study skills etc.)

Many Universities have services in speech and learning supervise by graduate school professors. You may have to go to their web site and find out for yourself if they offer therapy programs for your child. They are reasonably priced. These students are the ones being trained to service you during your child's IEP. It helped me understand how they could/couldn't help me. Just make sure to make your learning goals the most important ones since they don't have the time to totally fix the problem.You may only be seen one semester. Phone a week or two before classes to see if you can self-refer and by-pass the waiting list. They will administer a battery of tests so that you can discover your child's strenghts and weaknesses. From all the traveling I have done autistic experts have said that North Carolina and Mass. have autistic programs incorporated into the public school system. North Carolina at Chapel Hill has a lot of information on its internet site. The Mind Institute in Northern California has some helpful information. Scotish Rite does speech for free and is a terrific way to pick up academic skills. Easter Seals OT may do free testing to evaluate fine/gross motor skills etc. You will get a report indicating any age delays. Sacramento State Mary Jane Reese Center (Sacramento, Ca) has one of the best auditory processing, social communication , articulation (Speech Departments). If anyone has found outstanding resources for parents this might be the place to mention them.

FROM: THRiiiVE.com:

Autism Night Before Christmas

by Cindy Waeltermann

Twas the Night Before Christmas

And all through the house

The creatures were stirring

Yes, even the mouse

We tried melatonin

And gave a hot bath

But the holiday jitters

They always distract

The children were finally

All nestled in bed

When nightmares of terror

Ran through my OWN head

Did I get the right gift

The right color

And style

Would there be a tantrum

Or even, maybe, a smile?

Our relatives come

But they don't understand

The pleasure he gets

Just from flapping his hands.

"He needs discipline," they say

"Just a well-needed smack,

You must learn to parent..."

And on goes the attack

We smile and nod

Because we know deep inside

The argument is moot

Let them all take a side

We know what it's like

To live with the spectrum

The struggles and triumphs

Achievements, regressions...

But what they don't know

And what they don't see

Is the joy that we feel

Over simplicity

He said "hello"

He ate something green!

He told his first lie!

He did not cause a scene!

He peed on the potty

Who cares if he's ten,

He stopped saying the same thing

Again and again!

Others don't realize

Just how we can cope

How we bravely hang on

At the end of our rope

But what they don't see

Is the joy we can't hide

When our children with autism

Make the tiniest stride

We may look at others

Without the problems we face

With jealousy, hatred

Or even distaste,

But what they don't know

Nor sometimes do we

Is that children with autism

Bring simplicity.

We don't get excited

Over expensive things

We jump for joy

With the progress work brings

Child ren with autism

Try hard every day

That they make us proud

More than words can say.

They work even harder

Than you or I

To achieve something small

To reach a star in the sky

So to those who don't get it

Or can't get a clue

Take a walk in my shoes

And I'll assure you

That even 10 minutes

Into the walk

You'll look at me

With respect, even shock.

You will realize

What it is I go through

And the next time you judge

I can assure you

That you won't say a thing

You'll be quiet and learn,

Like the years that I did

When the tables were turned......

Kristina,

A friend of mine referred me to this link and I have to say that it made me smile as well as tear up a little bit.  Thank you for capturing what most of us go through.  Our children are very special and so are we as parents.  Sometimes we forget to tell ourselves that.  As a parent trainer told me once "Make sure you go out and treat yourself once and awhile."  If I could give you a 5 dollar Starbucks card through the computer I so would.  :)

To share a little about me and mine.  I am the single mother of an 8 year old whose official diagnosis is Fragile X Syndrome with Autistic Like Features.  Or..in plain english..Autism with a Genetic Source.  I'm also a Case Manager at an Adult Work Program for people with Developmental Disabilities.  Its hard being a single mom, but I've a lot of support and we manage just fine.  My son is somewhat non verbal but uses signs, words gestures and sometimes just shoving mommy. (though I try not to let him do that..hehe)  He was recently called the coolest kid in his class by the teacher and that made me smile.  I'm sure she meant his tempermant.  He's not prone to violence or angry meltdowns. 

Anyway, thank you for a little bit more hope.  :)

Nicole

@Dori Jaffe,Thank you so much for your kinds words--- "fighting for recovery" and the whole notion of "recovery" seemed, to me, to be calling on us to turn Charlie into something that is not him. Certainly we're always trying to teach him, but for him and grow and, if you will, become more of himself.
@Nicole, all the just shove mom method of communication-----what can I say, sometimes whatever works just works! Very cool about the coolest kid thing; Charlie can be very mellow and other times, a few more fireworks --- all very fun!thanks for virtual caffeine!

My son is near to full recovery. Based on scientific evidence and medical tests we have chosen to treat all of his medical needs and provide him with an extensive early intervention program including ABA, OT, ST, inclusive schooling and social skills training.

We have been so fortunate that he has responded to most all of the treatments including mild HBOT, mB12 injections, antifungal therapy and chelation therapy along with a long list of supplements and highly individualized gf/cf diet. He is healthier than ever, but still has many medical issues that require ongoing treatment.

So our experience is similar to what Dr. Chew describes, but the outcome is different. At the age of 5 1/2 my son is now telling me about how he felt when he couldn't talk or communicate. He remembers and it makes him sad when he thinks about that time. There is no guarantee that every child will recover, but with the proper medical attention, every child can get significantly better. I am confident, Dr. Chew, that your son benefited from the early interventions that you did with him because you continued for three years. No parent would put themselves or their child through what we do every day if we didn't get some positive results. While you seem to regret focusing on recovery so much during those early years, I sincerely hope that you haven't lost sight of what motivated you to try all of those things.

Hope is power. Recovery has not been my goal. Recovery is possible and real for many children, but you never know if your child will achieve it until you have finished the monumental tasks that bring recovery. What I have always focused on is my child's health. If, after all of our efforts to heal his body, we were left with a healthy child/adult with autism, I was fine with that. But knowing that there were so very many medical problems that my son had, how could I not try to heal his body? As his body heals, his autism fades away.  He is now indistinguishable from his peers and succeeding in a full day kindergarten class (with no aide) in a private Catholic school.

I offer my perspective so that others who are considering taking this path know that, while there are no guarantees, many children do achieve recovery.

Dr. Chew teaches us all a great lesson. Regardless of where you are in your journey, it is always important to live in the moment and enjoy your child for who they are. But, I believe, that doesn't mean you have to give up your dreams for who they may become.  

Best regards to all,
Holly Riley, mom of Quinn, age 5, recovering from autism

Is it possible to change the title of this blog,
Once Upon a Time, I Tried to Recover My Son From Autism,
because the word, "tried", sounds like I am trying things and maybe it didn't work? The word, "Recover", is premature. Less DSM-4 symptoms, maybe upgraded to aspergers, maybe blended in more in society. Many of the blog writers are dealing with diagnosis or treatment and not recovery. 

From reading the blog comments, what would you say is the focus of this blog. I wish there was a more positive, unifying title.

Renee -- THE major source of stress for me, as a parent of an 11 yr old with Autism IS dealing with "professionals."  We have gone to many people for help, and there have been a total of 2 doctors who were helpful, 1 simply by sending us to the other doctor instead of community mental health.  General ed teachers have been the MOST willing to learn and work with us.  Special ed teachers and therapists, both in the school system and out, have been the worst to deal with.  Talk about cookie cutter expectations.  "Support" makes me laugh.  I have been investigated by social services because I tried to get dental care for my child for years.  No one would touch her.  When I finally got her in to a university clinic, after a 6 month waiting list, they reported me for neglect because I tried to reschedule a procedure when my daughter was ill with a fever. 

I too was once a student in the Special education field.  As future teachers, we were taught that parents know nothing, teachers know everything--even though the "methods" and "best practices" taught in teacher prep programs are about 2 decades behind what parents know really works.  Needless to say, I am no longer pursuing that field.  Instead I try to educate people, such as yourself, anyone who will listen.

Professionals need to understand that until you have spent, say, 40 years working with these kids, you can not possibly be more of an "expert" than a parent who spends 24 hours a day caring for their child, researching not just ONE field or method, but all available (or unavailable most of the time), and educating their child in a way that actually works.

That being said, I have occasionally encountered a doctor, a therapist, or a teacher who taught me something.  To those people I am eternally grateful.  More importantly, they treated me and my daughter with respect, and did not presume to "know more," but instead offered their point of view from their own experiences.  That is the kind of support we need.  And we also need funding for babysitters, homeschool and private school funding when public schools don't work, and insurance coverage that ACTUALLY covers something. 

Parents of and children with Autism are victims of discrimination from the moment they receive a diagnosis, no matter which interventions they pursue.  There is no insurance coverage for developmental interventions, like Floortime or RDI which actually address the developmental progress of the child (the core deficit of Autism), rather than teach specific skills.  This is like denying insulin coverage for diabetics.  When children have gut issues, or metal issues, or food problems, the treatments are not covered BECAUSE the child has Autism, even though much of the same treatments can be covered for someone with Celiac disease, etc.

To add insult to injury, we as parents are constantly told that we MUST do things the way the system wants us to do things, or face social services, or something else even more horrible.  When we ask for help, especially those of us without a lot of financial resources, or those of us who are single parents, we get nothing, and then we are watched and threatened.

The only place we as parents can usually find support of any kind is on internet support groups, and as can be seen clearly with this discussion, the fighting and blaming and NOT SUPPORTING continues amongst ourselves.

There are certainly parents out there who need "professionals" to tell them what to do, or want some "expert" to take the weight of decision-making from them.  But most of us today are well-informed, and you can bet that between the mention of the possibility of autism and an actual diagnosis, a lot parents are going to have read as much as you have for your PhD.

So, what we need is true support: aknowledgement from professionals that a disability does NOT suddenly make our children property of the "field" or the society at large, realization amongst experts that they are only experts in one particular are, not Autism in totallity, and a united movement to end the blatant discrimination perpetrated daily by insurance companies, government, and school systems on our children.

I wish we would get rid of the labels that divide us and just be available for caring and sharing information on this blog. Our parents are the most educated to help their child. There is plenty of published autism research on the internet for each parent to discern the information. By loving our child we can help them be loved by others. It's not about cures. It's about love and what we want for our child. You never know how you have helped another person with the power of an idea.

In 1994 my non-verbal 7 year old trashed under the kitchen table during each meal. The environmental doctor (new idea & research) about giardia, heavy metal and yeast changed meal time into something pleasant. His suffering stopped.Keep the ideas flowing.

This was a very enlightening thread. It educated and challenged nearly all of my 'ideas' and 'knowledge' about the condition of autism.
Previous to today, I had been inclined to think of it as an epidemic and related to something conditional in the environment, like a toxin or heavy metal or radioactive component as yet unknown. The idea being bandied about the Net that the condition and its prevalance are somehow related to a vast effort to 'dumb down the young' seems obtuse and ill-founded. Especially in regards to all the creative therapies that are being developed to restore more normal functioning and development in these kids.
I am a father of a four year old boy, who was born at home in a water birth, and treated by a midwife/MD but never innoculated or vaccinated for anything due to religious beliefs and the intellectual discomfort with exposing our baby to so much 'medicine' I had heard it blandly put "vaccines cause autism" as if it were an ironclad medical fact...now Im not so sure about that point, but nevertheless, I still do not believe in this kind of medical intervention in the name of Fear and compliance with societal standard....
I wish for all the children struggling with this that they can find more strength and internal power and healing and peace and rest in their bodies and minds, that they might be uplifted and cleansed from all ill and sickness and heaviness. It broke my heart to read about all of this.
Thanks for the humility check, and for educating me more about this important topic...
Get Well Charlie!

@Jan Fischer, I actually hesitated a bit before using that word, "tried." But I decided that it was important for me to put it in the post as I felt that "recovering" my son was something we'd indeed tried, attempted----and, indeed, failed at.  My thought since then is that recovery was a "goal" we were bound to fail in and was, further, the wrong sort of goal. A child might start to talk or no longer flap their hands or be able to attend school in mainstream settings and on his or her own----but there is more to being on the autism spectrum than these things. 
Very best----

 When we were trying to figure out all that was going on with our son When he was just 18 months old(he's 10 now)-The word/condition/diagnosis of autism was never mentioned-it wasn't until he was three that he received a diagnosis of p.d.d.(nos)-even then, I had no  idea it was part of any spectrum...in fact, I had many conflicting views of what p.d.d. was!  His younger brother (now almost 8) was diagnosed with autism(nos) at 3 and 1/2...I look back at that time and think of how naive(sp) I was. And I am glad. Had I known how autism was perceived-I might have believed the"press" I might have treated my boys differently-as if they were broken-or defective. Which they are not. I am thankful for my ignorance. My kids are here-now. I don't have time to investigate whether or not this was enviornmental, genetic, caused by vaccines, evolution etc. My time is better spent in raising them and in trying to make the world a more accepting place for them. A place in which all people have value.

@Rennee, who said, "Well, I believe if we can uncover "THE cause" then we can work toward prevention in the future but in the mean time, there are children with autism here."

There are also many adults with autism here on this earth, and we do not all want people like us to be prevented in the future. In fact, many consider "preventing" autism to be a form of eugenics.

  "I had a former professor who was sure that the child with autism is happy in their own world because, as she put it, they know nothing about ours.  I'm not sure that I agree but I would love to hear from parents of children with autism."

First of all, there is no "the child with autism". All autistic people, child or adult, are distinct individuals and interpret the world differently. So if you figure out how one autistic feels, you can't directly apply your findings to everyone else on the spectrum.

If you'd like to know more about autistic people's thoughts, feelings, and emotions, find out from the individuals themselves, not their caregivers. True, some children and adults may be unable to communicate their thoughts and feelings in ways that are comprehensible to most people. But there are countless others who can communicate through speech, type, sign, PECS, pictures, and various other forms. Many autistic adults who communicate today were unable to as children, but can now describe how they felt when they were young.  I strongly urge you and all other researchers to go directly to the source, to the true voice of autism: autistics.  Neurotypical people, while also being unique individuals, often are unable to imagine what it is like to be autistic. As a result, they grandly misinterpret a great deal of autistic behavior. If parents, teachers, and researchers took more time to listen to the experiences of autistic people, they might have a better understanding about the autistic child they are trying to understand.

Thank you for writing this. As the mother of a son (8) with autism and extreme short gut, I have tried to avoid the trappings of cures/treatmens. However, along the way, we have benefitted from finding a special diet that did stop my son's diarrhea. Perhaps because I have a neuromuscular disability and use a wheelchair, I have always accepted my son's many differences and wished that others (family, friends, society in general) would open their minds more to neurodiversity in the form of autism. We have chosen to embrace the the hand-flapping, bouncing, fussing, and obsessing (as much as possible), but I know others who have found satisfaction in alternative parenting strategies. I wish we could all just accept there's no one perfect way to raise a child with autism.

Hi Kristina, I am so glad you realized "When I thought about recovering Charlie from autism, I realized that I wasn’t thinking so much about what Charlie needed as what I thought I had to do as a parent." a well written and insight piece of writing, you son is one of the lucky ones because he will be allowed, accepted and understood at least by you, your so right its the ignorance and narrow-mindedness of others that's our real problem. I am a mother of an aspie child, have Aspergers myself. It took half a life time to find true self, of course we change, adapt as we grow, but I may never of known about ASD until in my forties but I never lost my autism core...

The way I see it apart from being on the autism spectrum I have
many co morbid / associated conditions... in fact a whole list, not sure anyone has it right, including myself. Often our labels can get over complicated and near impossible to know which bit is which, with many overlaps, but any label does not change who we are. I have my own simplified version - The center as I see it, is us - THE AUTISM HEART which is the differently minded part, which to an extent feel many NTs (the average person) just does not quite get or understand. So I feel often the most important part of us the center, gets neglected, so its no wonder we are often a little off balance.

Surrounding the centre are a web with many chaotic paths, often disjointed and ineffective, as these neuro associated conditions, co morbid mental disorders (or misunderstood difference), environmental factors are all blamed and continue to circle around the most important part of us. I feel its time others started with our core, the center - autism heart, forget the labels. Because if our hearts were balanced fulfilled and allowed growing up, as I see it. I feel a lot of the existing links in the web, may start to fade. I feel many of our labels are often caused by others misinterpretation, dealing with small aspects of the whole person, often neglecting or not understanding our centers from when we are born.

Those of us on the autism spectrum have some wonderful unique often under resourced talents, our quirky differences often keeping us on the edge of society. But some of the most brilliant minds have and continue to be on the autism spectrum, I feel its about time everyone embraced these unique talents and give us at least a chance, I will always have my autism heart how ever much you try and change or make me fit, a square will never fit a circle, so I can not help but wonder why so many try instead of seeing whats right in front of them, get down on your child's level and see thought their eyes....
Alyson Bradley - Aspergers Parallel - www.asplanet.info

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Without doing much of the biomedical stuff (because we too tried during the initial days I was full of fear, because of the bogus stigma), my son might be considered "recovering" by son too, because he's growing and developing and learning, like all people do as they get older. But he's still autistic in that he is in the world in a different way from most people.

I'm beyond offended that anyone would "pity" me or my son because of this. He's fine. Great. Better than lots of people who aren't autistic. I take no issue with treating the medical issues that might come along with a different neurology. I do take issue with the notion that so often lies behind it: that autism is a terrible, disabling disease. It certainly isn't in our case, and I'm so concerned that my son will grow up and learn that this is how he's perceived in our culture.

Hi Kerry
I may be on the autism spectrum myself, but one of my biggest concerns is just like yours "that my son will grow up and learn that this is how he's perceived in our culture." it how other preceive is rally is the biggest problem, and the only way around this is AWARENESS, AWARENESS on a global scale.... other young adult will continue to be ashamed of who they are, so many worry they will be called retards if their peers find out they are on the autism spectrum, no wonder so many hid the fact or alinate they selves from a society they have as much right to live in andbe who they were born as.... but like any miniority group we have to stand up and speak out, as a friend of mine said " “A wave powered by a strong tide, becomes a force to be reckoned with. It will be seen, heard and felt by many. Some people will remain unaffected or uncaring, but others, who have not noticed the ripples before, may turn, notice and begin caring." I truly believe change is happening but always unfortunatelly the storm before the calm, I dream of a day if not for myself but for my son that we will no longer have to feel a need to hide behind any mask...... www.asplanet.info

" I wish we could all just accept there's no one perfect way to raise a child with autism."

Just had to second Donna Kazee on this-----so obvious and so often forgotten (else why would we all be consulting those parent "experts")!
@Alyson Bradley, thanks & thanks--one thing my husband Jim and I often say about Charlie is that he truly, truly has heart and in the sense, if you will, of the word "courage," thinking that it comes from the French word for heart "coeur" and the Latin word for heart "cor."   It's a cliché, but he has been and is my best teacher.
@Kerry Cohen, pity is something I definitely respond poorly too and try (try!) just to keep from saying anything about. It was a while ago that another mother of an autistic child (in preschool; my son was about 7) said words to the effect of saying she really felt sorry for me----I think I just tried to get out of the conversation. Charlie has had so many extra challenges it often seems---not easy to realize that some have (sigh) seen him as the child they're relieved they don't have.
Needless to say, we always make sure that he knows how much we love him, regardless and always.

Ok, I think everyone would agree that a spectrum disorder would not be caused by a single variable.

A THEORY is just that a theory with no facts.  But once you have a fact not matter how insignificant it becomes a probability. 

Fact is Vaccines contain many allergens, viruses, animal GMO protein, toxic substances.
Vaccines containing thimerosal contain 25,000 times more mercury than its allowable for drinking water, and that is not being drank its being injected bypassing your body defenses for mercury.
Fact is mercury is TOXIC to nervous system, it is also the most toxic non-radioactive element on earth.
The safe dose for human mercury has been established for Methyl-Mercury from fish being consumed, not for Ethyl-mercury from thimerosal which is a different compound and not consumed but injected, and under this guideline a newborn would have to weigh 275pounds to absorb a HepB thimerosal shot.
Its is also a fact that LEAD is prevalent and toxic to humans
There is Latex in vaccines
There are animal protein in vaccines
There are various viruses in vaccines
One could argue that live or attenuated viruses can cause a full blown disease, just how do you kill a virus which we can't even classify as living, a virus can't replicate itself, virus doesn't move, virus doesn't eat, virus just exists and floats around
There is never a vaccine which has a completely isolated virus, just how could they isolate a virus and get rid of all other stuff from lets say eggs, human diploid cells (aborted fetal tissue), or monkey kidneys

Thousands of parents notice regression of their children following vaccines.  I talked to to many people, have met people who got Polio from Polio vaccine, this is even listed as a side effect.  Sadly many people don't talk about SIDS for SIDS I am sure is caused by Vaccines in many cases.  When you inject a child with a brew of toxic chemicals and animal proteins which human body was never exposed to before, you can't expect the same behavior in each child.  Many parents say that their child developed fever following vaccinations, inconsolable crying, they they feel relief when child falls asleep from crying itself to sleep, they think its over and when they come to the baby in the moring, their baby is dead, and some with hemmoraging behind their eyes are blamed for shaken baby syndrome.

The whole idea of all vaccines fitting all of our children is LUNACY. 

I could have accepted our childs Autism and try to make everything around him to better suit him, but I/we choose a different approach.  We decided to make him better so he could live a normal life is possible.

There is full blown Autism which is permanent, with no gut, issues.

Then there is environment/vaccine induced autism where inflammation, infection, sensisitivity, allergies, manifest themselves with autistic like behaviours.

To some people who think we should leave autistic children as they are, why should't we make them healthy first.

My son was speaking at 6months, talking/point/saying names of things at 9-15months, walking 10months, at his HEALTH CHECKUP he got MMR then few months later another DPT shot, then gradually the DIARRHEA started, his eye contact was gone, you could say his SOUL has abandoned him, he would stare at the wall, be completely non-social, non-verbal, didn't care daddy came back from work, slept 5hours a night, and you're telling me to accept autism, this simply is bigger than just a brain disorder.  Something "damaged" his brain and hopefully we can fix everything else around him so his brain can heal.

I feel deeply sorry for the parents of children who have no hope of recovery.  Nobody knows what it means to have an autistic or disable child unless it happens to you.  People who have no autistic children tell us what we should do.

I would never accept Autism as God's will.

I should also say that we humans, are more alike than we are different.  We always try to segregate ourselfs: black, white, small, big, rich, poor, educated, dumb, etc etc. we are taught to see each other as different instead of the same.  Its time to unite and work for a better tomorrow for our children deserve it.

Like the ending in www.zeitgeistmovie.com says:

I have spend the entire life trying to be good at something, but I have realized that I should try to understant who I actually am.

Miss Kristina:

You probably won't see my comment among all the others.  I just want to thank you for this post.  You and I have travelled a very similar road. It is unreal to think that at one time it was more important to "cure" our children rather than accept them.  What a learning process parenting is...

Here's a ((hug)) that you  have the strength to do this.  We love you, and Charlie.  Thanks for allowing us to be a part of your lives. (Jim's okay, too, I guess!)

Rose, Ben and Joel.

Genetics?  That is just an excuse.  Besides the fact genetics is alterable in a positive way!  Linking autism to genetics is just nearsighted.

Speaking of nearsighted, that's the perfect example.  Since, the 1980's there has been a huge upswing with people who've needed corrective lenses.  Now would you call that change a change in genetics?  I thought it took a long time to change the gene pool?  Just some food for thought.

Being born with a autism core/heart I feel sad that some people still see autism as a kind of wrong, some still think a vaccine or somethink gave it to us.... I have always had autism like many in my family for generations I believe and feel was born with a difference, which I have no problem with, but many seem to. I often feel those of us on the autism spectrum do not have the problem... but those that do not truly understand seem to;

VACCINES! my take:
Being on the SAutism Spectrum myself I do not and have never suffered, just differently minded. So personally I feel there is NO link to sutism and vaccines I was born different... I am not a expert in the vaccine field, but feel we all have to make our own minds up and the best way to do that is listen to the real experts, top research centers and up to date info.

My gut feeling even before reading all the best research information would still be NO. I do not take any think lightly, as very rarely even take any form of medication or drugs... but I do believe these vaccines save many lives.. scare mongering kills!

Just some expert opinions:
The MMR Vaccine and Autism -Tim Worstall
This rather surprised me in the papers this morning.

The measles, mumps and rubella vaccine is safe and does not cause autism, the most comprehensive study carried out on the jab has concluded.

Is there anybody out there who seriously thinks it does?

No, that's being unkind I think, my position is clearly influenced by the fact that I actually know something about the background. (Disclosure, I'm paid to write about Simon Baron Cohen's theories elsewhere and given that he's the head of the Autism Research Centre at Cambridge, obviously some of the knowledge has sunk in.)

The observed rise in autism incidence from the early 1980s onwards has been down to two things.

1) The diagnosis was changed then from being purely what we might call "classic autism" to the autism spectrum, including conditions like Asperger's Syndrome. Change the diagnosis and you'll change the incidence, obviously.

2) If Baron Cohen is correct (and he does seem to be) there's been a rise in assortative mating. This leads to more children with the extreme systemizing brain type which is the definition of autism.

No, it hasn't been the use of mercury in vaccines, which is the current US woo woo scare. (When Japan removed such mercury from childhood vaccins the autism rate continued to climb just the same as everywhere else.) Nor is it the MMR vaccine, which has been the woo woo scare here.

So can we get back to people vaccinating their children please? We really don't want to return to visions of children dying, being brain damaged, by measles, do we? Or children being born deaf, dumb and blind as a result of their mothers getting rubella while pregnant? Nor, if I might mention something closer to home*, a return to 1% of adult male mumps sufferers becoming infertile?

The Centers for Disease Control says "There is no convincing scientific evidence of harm caused by the low doses of thimerosal in vaccines, except for minor reactions like redness and swelling at the injection site."

The American Academy of Pediatrics says"No scientific data link thimerosal used as a preservative in vaccines with any pediatric neurologic disorder, including autism."

The Food and Drug Administration conducted a review in 1999 -- the year thimerosal was ordered to be removed from most vaccines -- and said that it "found no evidence of harm from the use of thimerosal as a vaccine preservative, other than local hypersensitivity reactions."

The Institute of Medicine’s Immunization Safety Review Committee concluded "that the body of epidemiological evidence favors rejection of a causal relationship between thimerosal-containing vaccines and autism."

And a study of California Department of Developmental Services data published last month indicated that there was "an increase in autism in California despite the removal of thimerosal from most vaccines."

MMR vaccine 'does not cause autism' - Telegraph
http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2008/03/18/nmmr118.xml

How Safe Are Vaccines? 21 May 2008 by Alice Park - Time
Interesting article, I guess until there are clear guild lines we will all have to make up our own minds:http://www.time.com/time/health/article0,8599,1808438,00.html

Nearly all experts say NO - you decide.


But fad treatments, alternative treatments is big business - money to be made. Maybe I will start my own fad treatments and charge (water and exercise) work better than most fad treatments!

The great autism rip-off
http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip---
How-huge-industry-feeds-parents-desperate-cure-children.html
I hope this helps explain a little more, enlighten some!
Aspergers Parallel Planet - www.asplanet.info

@ Alyson,
My son, like you, was born with an Asperger core.  I know that, at 9 1/2, he has the same core that he had when he was born.  I love him so much that I wouldn't change his core even if I could! 
I love hearing from adults with autism.  Autism awareness can only come from people like you and others with autism, like many who post here, since yours is a first person account.
By posting online, you also give me examples to show my son since no one in our family has officially been diagnosed with any type of autism (although some ADHD.)
Thanks for contributing!

I'm with Beth. I too always listen most to autistic adults and seek out their ideas and advice. I also know my son was born as he is. He is a 5 year old version today of who he was as a newborn. He isn't a person with a disease or disability. He communicates differently than I do, that's true. And sometimes that takes some hard work on my part. But autism is a part of his core personality. And I think he's great! Something I love is that when he reads the word "autism" he always reads it as "awesome." That's my boy!