What do you mean by this? Kristina is a parent of a child with what most people would describe as "severe" autism. Dora is an autistic adult. That's not a three-legged stool under construction. That's a well-balanced scale on which some things carry more weight than others, depending on the side under question. Kristina's not blogging about an "Aspie." Her son has the same needs as those that farmwife describes below. It's not about Aspie vs. severely affected autistic. You may as well try to set up some great divide between the intellectually able and the intellectually challenged as some kind of false war. And this balance achieved here is exactly what anyone who lives with autism ought to seek out: the experience of a parent of a child with autism and the experience of an autistic adult.

If people come on here looking for blather about a currently unreachable, unattainable, unrealistic "Cure" as their need for change, they've come to the wrong place. The "change" that they blog about here is real change, really now, for real autistic people, young and old. That's a balanced edifice on which we continue to build.

I don't see the "neurodiversity movement" as what some posters on this thread have described, at all. I see it as being about having society recognize that autistic isn't "non person," that "autistic" deserves as much personhood as nonautistic, that autistic deserves the respect, support, and rights due to any person. If some autistic people choose to interpret that as not seeking a change for themselves, isn't that their right? Isn't that, in fact, one of the very rights that the neurodiversity movement is arguing for--the right to BE AUTISTIC if that's the choice, rather than to have people fighting against who you are?

Yes, there are extremists on both sides of this, as there are with every perceived division. But what parent wouldn't want their child to be accepted and supported by society? What parent wouldn't want justice and fair dealing for their child, whatever the need? What adult wouldn't want these things for themselves if they need it? Is that alone not enough common ground for us all to stand on?

If Kristina's perspective is that of a parent who has recognized the futility of fighting the reality of her son's autism, who has ceased and desisted from the control freak demons that lurk within us all before we have children, who has embraced who her son is, how is that in some way "wrong" or on a "side" from someone else? If Dora wants the same for herself and other autistic adults who feel as she does, how is that a "side"? How can a personal experience, perspective, understanding, any of that, as idiosyncratic as it all must be, somehow fall into "camps" or "sides"?

I just don't get this argument. This domain is about change. That change isn't a cure, a currently unrealistic, untenable, unworkable goal. It's about a change NOW at the level of society, a change in support, information, acceptance, and understanding.

It's about a change NOW at the level of society, a change in support, information, acceptance, and understanding.

Yep. When we talk about how others react to our kids, civil rights for those with disabilities no matter what the age, the issues of inclusion and accessibility in society, the misunderstandings, travails and uncertainties of our schools and social systems--that is what is at stake--and I believe that it doesn't matter what side of what fence one is on. The cure wars will, I have no doubt, continue for a long time. But the large scale social systems changes will happen at a glacial pace until we all pull on the same side of the rope. Just my view. Guess we'll see if that's possible.

Emily said, "If people come on here looking for blather about a currently unreachable, unattainable, unrealistic 'Cure' as their need for change, they've come to the wrong place."  That statement perfectly embodies what Tim and I are talking about.  Emily praises the first two "legs" represented by Kristina and Dora's approaches, and then completely dismisses and condemns the biomedical approach, which, she says, has no place on this site.

Regina says, "The cure wars will, I have no doubt, continue for a long time."   If some people report that their or their children's autism has been ameliorated with biomedical treatments, there is no reason why that should be cause for a war.

Autism is a biodiverse spectrum.  Why so much passing judgement on others' experiences?

If someone said to me,
- "I am advocating to make better ABA services available," or
- "I am working to improve residential options for adults who cannot live completely independently" or
- "I am reserching a new approach to OT" or
- "I am working on raising awareness of communication styles of people with Aspbergers syndrome"
I would never say, "That is the wrong thing to focus on.  You should only work on vaccine safety and biomedical treatments."  There are many avenues for work related to autism. 

If a parent reports that dietary intervention helped their child, that parent is not being divisive or engaging in a "cure war".  Their experience should be respected, not rejected out of hand.

I've never said that a parent who tries dietary intervention or biomedical is being divisive or engaging in a cure war. I just haven't. We've done some "biomed" things ourselves. Who "rejects out of hand" parents who comment on having done dietary adjustments? Kristina herself has done this and continues to some extent to do so. I know several parents personally who report great benefits from these diets. What does that have to do with anything?

The only "war" that exists is the one manufactured in the minds of shrieking people who think vaccines are to blame for autism. That is the gyre from which all other mini-"wars" have spun off. The rest of this stuff is really "we can agree or we can disagree or we can agree to disagree" territory. Some people just like to be paranoid and conspiratorial and believe garbage, and some people don't. That's where the real division lies. It's not a war. It's a fundamental difference in worldview, one that isn't going to change just because everyone argues about it all the time. It's completely pointless to try, which is why quite a lot of us just want to see a focus on the common ground issues and let people do what they think is best for themselves and/or for their families. If, in the process, someone on either "side" sees something that seems unsupportable, morally or scientifically or both, they're gonna comment on it. Big whoop.

Every movement, every effort to make change, is going to have its people on the edges who really push the envelope. These folks are useful in that they keep the middle ground as expansive as it can be, and they let us see what the limits might be. They can argue stridently and unrealistically for whatever utopia they envision, and in doing so, they show us what the edges of possibility are. We have plenty that is reasonable within the boundaries of these edges to work for and change, and we ought to be doing that. The wasted verbiage on "war" is, like most things having to do with war, a waste.

I would like to add that nowhere did I "completely condemn" the biomedical approach. I would never do that, being a practitioner of some biomed myself. I believe that it is another characteristic of people who view themselves as being at "war" that they like to propagandize and "spin" things. Please do not do that to me.

As for Tim and his stool...Biomed is not part of the social mission of Change.org. This site is about achieving social change, now. It's not about looking for medical interventions, cures, treatments to ameliorate behaviors, etc. There are plenty of sites for that, as you are no doubt aware. But these medical and health aspects are not a part of the mission of social change that Change.org espouses. It's simply not a relevant part of this site. What on Earth would hyperbaric oxygen have to do with improving social awareness, understanding, acceptance, support systems, or information dissemination about autism? People who came here hoping for some kind of cure-based agenda need to find a site with a medical mission. This ain't it.

Biomed is just one among many topics discussed regarding autism, of course, but it (as Emily points out) is not about social change and activism. Seen within the broader context of disability rights, biomed is really, indeed, not at issue. 

The biomedical paradigm of autism is very much about social change and activism.  There are a whole lot of political and financial reasons why the link to vaccines is denied.  There is a whole lot of narrow-mindedness in the way that autism is perceived as caused only by genes that impact the brain, instead of being seen as a whole-body syndrome.  The "Semmelweiss Reflex" is alive and well.

Biomed is indeed an issue in the context of disability rights.  It has to do with the right to receive appropriate medical treatment and to develop one's full potential.  It also has to do with the rights of consumers to know the risks of products such as vaccines and to make informed choices.  It has to do with environmental issues such as mercury from power plants.  It has to do with the importance of science and medicine developing the best knowledge and research and treatment instead of being controlled by vested interests.

You seem to me to be contradicting yourselves, Kristina and Emily, because you are saying that you have no problem with biomed but that it has no place on this site.

I mentioned dietary intervention as but one example of biomedical treatments -- the treatments that Emily appears to be describing as "blather about a currently unreachable, unattainable, unrealistic 'Cure'". 

I did not bring up the word "war"; it was Regina who said "cure wars". 

Calling those concerned about vaccine injuries "shrieking people" is offensive and for the most part inaccurate.  Robert F. Kennedy jr. described the mothers who told him about their children regressing after reactions to vaccines as follows: “And they were not hysterical people. They were scientists, they were doctors, they were psychiatrists, they were pharmacists, they were people that had their feet on the ground. They had attended the conferences, they had read the scientific literature, they had calmly and deliberately gone through this, and they had reached a conclusion.”

Certainly it's about a change in perspective but, due to the emphasis on "recovery" in biomedical perspectives, the biomed view would seem to advocate for a restoration of the previous order, than looking towards a new understanding of being different and of ways to change society to accept difference. Rather, biomed seeks to change the disabled individual to a perceived "normal" state.

Educational therapies also attempt to enable the person to move towards a more "normal" state by teaching the person how to talk, write, behave, etc. 

People who work on biomedical also seek to understand their (our) children and work on societal issues; the two are not mutually exclusive.

The biomedical viewpoint is very forward looking and a fundamental change.  The static gene-brain paradigm of autism is antithetical to a new understanding and is based on an old conservative order.

Education can do that if it's of a "normative" sort; other models of education start with the individual and seek to cultivate what talents and abilities are integral to her and him, and to bring out that individual.

As your son was growing up, did you allow him to sit in a corner and self-stim all day?  No, you have worked to break through that autistic behavior and draw him out of himself, through special education, personal interaction, recreation, therapeutic services.  Does this mean that you do not accept him as he is?

I'm sure you allow some stimming, and work towards an educational approach based on his individual interests and needs, but what you describe of his life is certainly not just totally accepting his autism; you and his father and teachers work with him evey day to develop skills and communication that go beyond what he could do if left to his own devices.

Biomedical intervention also starts with the individual, attempting to identify medical issues affecting that individual and to bring out that individual by addressing biochemical and immune and digestive issues that may result from toxic exposures or other causes.

For example, if a person who has low levels of glutathione is exposed to mercury, they are more likely to be adversely affected because they lack the ability to excrete that mercury and it accumulates.  This can and should be treated.  The mercury is not a part of the person's identity to be accepted.

If a person's immune system is disrupted by vaccines causing neuroinflammation, inflammation of the digestive tract, and allergies, all of which impact cognitive function, this is not a part of the person's identity to be accepted; this should be treated.

Effective treatment can allow the individual to flourish as they were meant to be were it not for environmental exposures.  This is not changing the fundamental inherent nature of the individual; this is unlocking inherent individual potential.

I'm not saying it's easy.  This is new and developing science.  But some people are benefiting tremendously from biomedical treatments.

You say you want to work towards ending the "autism wars".  A first step would be to acknowledge the validity of the experiences of so many parents, practioners, and people with autism.   By continuing to negate and criticize biomedical treatments, you are continuing to instigate conflict.   

Acceptance is the beginning and enables one to see where a child is and start from there, with his skills and challenges. We've been working on teaching him to spend "free time" where he hangs in his room and is quite happy to be left to his own devices. Education is indeed transformative.  Fascinating to read the numerous narratives of parents' experiences and to continue to look for the bigger narrative within them.  Life on the waterfront is a rich place indeed.

Yes; have also been reading a number of the more recent books about biomedical interventions----

#1 is definitely services, supports, schools, education for the lifespan.

Indeed, yes. It is very easy and the good will has always already been present among all, if we could let ourselves let it arise!

Thanks so much and just have to reiterate your last paragraph:


"autism changed me by giving me more patience, accept differences in others, live for today- don't anticipate the horrible future. Things of the future don't usually turn out the way you anticipate. Worrying about the future causes you to "miss out on the little moments of happiness during the day"."

that's the message.

That's what I like about the perspective of Kristina and others who share it.

Yep.

Et pax nobiscum omnibus!