Susan's Blog

Monday, March 29, 2010

The Reality of the Autism Rifts — and What Obama Should Do

Apparently the President has put on hold the nomination of Autism Advocate Extraordinaire Ari Ne’eman to the Disability Council. There has been a great deal of negative feedback to the President for his pick of Ari. You can read more about the issue here. There is no question in my mind, however, that Ari deserves the post because he is a tremendously powerful, persuasive, and articulate spokesperson for high-functioning autism.

The problem with the pick is that autism is such a broad spectrum and those most affected by it are also extremely diverse to the point of terrible antagonism in the autism community. The cracks that run in the autism community landscape are broadening to the earthquake level. Autism-Vaccine-Connectors vs. Autism-is-Genetic-and-not-an-environmental-injury is only one such divide. We also have autistics themselves vs. parents. We have behavioral-therapy-practitioners and we have relational-therapy-practitioners; we also have biomedical-interventionists and traditional-medication interventionists. And I am mostly speaking of the case of autism parents, not of those with autism themselves.

We also have the majority of the parents who are a bit of all of the above. We try many many things to help our kids perform at their best potential. That is a parent’s job — along with loving and accepting our children for who they are. I don’t need to lecture any of you on this.

It is this broad and colorful reality of the autism experience that calls for a more diplomatic choice than Ari, or for a co-representation. My thinking is that Ari represents many autistics themselves, the high-functioning in particular; so then we also need a parent (parents are arguably just as affected by autism as autistics themselves, particularly the more involved children with autism). We need diplomatic people on this council who will listen and truly represent and understand all of the plate tectonics of the many autism continents. If we are talking about autism policies and programs and the spending of money, we are talking about a serious chunk of change and energy. We therefore need the broadest and least inflammatory representation possible. I think Ari + a parent of a fairly severely autistic child would be the best representation for such a split community.


Ne'eman is a pathetic joke. He will never represent what the majority of autism truly looks like and what parents deal with.

— added by Anonymous on Monday, March 29, 2010 at 2:12 pm

Okay, I lied, I'll touch this with a 10 foot pole, just not on FB. 😉 Obviously, since I am not a biomed parent in any sense of the word, I like Ari, BUT, can understand how it would feel if the shoe were on the other foot and say Jenny McCarthy were appointed. I'd have a cow. I'd be livid. I would be on that phone calling the WH to air my disgust. You get the picture.

Anyway, as much as I *don't* do biomed, I have close friends who *do* and who also fully support the vaccine injury angle (let's not get into semantics here), so that right there is proof that the biomed and non-biomed crowd can indeed come together and break bread. Therefore, I think your solution is a very reasonable one, especially considering how I'd feel if the shoe were on the other foot.

Having one's voice heard, no how much other people might disagree with what you're saying, is so important, and biomed parents need to feel supported and have their concerns validated just as much as non-biomed (I don't say neurodiversity, because I'm not exactly in that "camp," either). I'm sick of the infighting. The autism community needs healing, and needs to come together like my group of autism girlfriends, and realize that just because we don't always agree on treatments or cause doesn't mean we can't support each other and be respectful of one another.

Just my 2 Pollyanna cents for the day. I'll hold hands and sing kumbayah with you, Susan. 😉

— added by ASDmomNC on Monday, March 29, 2010 at 2:20 pm

I think that is a wonderful idea. The problem that I see, is that there is no talking to those who are anti-Ari. They are openly hostile to anyone who does not agree with their view of the world. Sad thing is though that Obama could have made Ari a recess appointment if he really wanted to. Wonder who is really angry here and who is being coddled? Would give us an idea of the direction that autism research is really going to go.

— added by Elise on Monday, March 29, 2010 at 2:39 pm

Both sides feel exactly the same. The both feel attacked by the other. They both attack; I have witnessed it. It needs to stop, although I do believe in healthy debate, too.

— added by Susan Senator on Monday, March 29, 2010 at 2:45 pm

I think they need someone who has an open mind and realizes that each and every family is different. Jenny McCarthy, Autism Speaks and ASAN/LBRB/HUB do not. Each and every one of those wants to tell you and I what is right for you and I.

Yet, I was the one sitting at that meeting an hour ago. I was the one signing the paperwork that if I choose in the end… my youngest son will no longer be in an integrated classroom but instead in a multiple exceptionalities one starting Gr 4 in Sept. This one with an emphasis on education, with some social/life skills.

I am…. not Ari, not the Hub, not Estee that has no clue what the true "system" is like in this Province… I was. Me… Little old me who's been nagging for 4mths to put "developmental delays" on an IPRC along with his Autistic Disorder to move him out.

I… the parent that just a year ago swore I never would do this…

I need someone that realizes that what is right for me, may not be right for you… He's not it. He cannot see outside of his "box".

— added by farmwifetwo on Monday, March 29, 2010 at 2:46 pm

Ari Ne'eman has stated in the past that he does not believe that autism is a disability. On my blog, autism's gadfly, I have offered documentation of this (shameless plug I know) I don't understand what the point is of appointing someone to the disabilities council is when they do not believe autism is a disability.

— added by jonathan on Monday, March 29, 2010 at 3:11 pm

I think Kim says it best. I agree with her 100%.

"Do the highest functioning with the community have a right to dictate the services and research that should be available for their less fortunate "peers?" I don't think so."–Kim Stagliano. "

— added by Anonymous on Monday, March 29, 2010 at 3:18 pm

I agree Jonathan. What is even more puzzling is why Susan Senator, Kristina Chew, Estee Klar..all parents with very severe children would want Ari Ne'eman representing the needs and well being of their children. Smarten up people. Ne'eman is not the one who is needed there.

— added by Anonymous on Monday, March 29, 2010 at 3:22 pm

Come of it Susan, you have just demonstrated your complete failure to understand how the disability movement has matured.

Would you suggest that any other impairment needs to be represented by the parents of those with the condition rather than the individuals themselves

Every condition that I am aware of has a broad spectrum of intellectual ability associated with it, and a broad spectrum of impairment too.

Ari who I hope will soon be able to take up his appointment, will be there not just for Autism but the entire spectrum of Disability, so are we going to argue because he does not have x, y and z he ought also not to be there to make common cause with those who do have x, y and z.

Why do people always have to make out that autism is a special case when it comes to representation.

I'll tell you why, it is sheer prejudice and fear, the fear that we are good for something and are as fully human and capable of self (and other) representation as anyone else.

I am willing to bet that many on the disability council would laugh at Jonathon's argument, because they understand and work within the social model and do know the difference between impairment and disability. This is a very good argument for why Jonathon does not represent anybody, he lacks the proper perspective which Ari does have.

Even if Ari does not win through sooner or later someone else who thinks like him will.

— added by The author on Monday, March 29, 2010 at 3:24 pm

As the parent of both a severely affected and high functioning child, I am torn. In one respect I want to slap him. In another, I'm just glad they recognize that Autism is a neurological disorder and that it is running rampant and we need representation. That said, there is no perfect answer. I learned a long time ago that Autism is almost as political as conservatives vs. Liberals and gets just as ugly during debates (IF NOT WORSE). I learned to keep myself out of it a long time ago. Why? Because, when it comes down to it, I'm the one living it. Me. With my kids.

I do believe we can all get along. I'm tired of being told that my way stinks, that I'm doing it wrong, that I need to do more for them, that I could be doing ______ treatment. Why can't we just accept our differences and work together? What's wrong with that? The fact remains is that there are tons of kids who need help. They don't need bickering.

I do it my way, you do it yours. Now let's get to work.

— added by Domestic Goddess on Monday, March 29, 2010 at 3:54 pm

I am an ASD mom who has tried everything and have found the positive in everything. Bravo, I COMPLETELY agree with you on everything in this post. I have friends who reside on opposite extremes of the ideologies of Autism, and both sides attack. This is me giving you a standing ovation for that one….. It is a spectrum, and those that can speak for themselves are fortunate, but the truth is that parents are first on that front line by the very nature of being parents, and it is our voices that should be heard as well, especially when we speak for more severely affected children, or those like my son, who sit on the fence of not severe enough, not high functioning enough….Autism absolutely completely affects the whole family, and while we, the parents, see our children, love value and celebrate our children for who they are, they do need to interact within a world that needs to be more thoroughly educated…It wasn't until I had Gabe that I realized just how powerful a voice could be, I think you have a wonderful solution for a more inclusive and comprehensive way towards awareness and acceptance.
Fist bump to you……….

— added by maribel on Monday, March 29, 2010 at 4:02 pm

A question that was asked by "anonymous"#3 was why would a parent of a child with a high level of disability want a representative on the council that is "high functioning"? My answer is that I want my son to have the rights that ASAN is arguing for. Will he ever be able to live independently and speak up for his own rights? I don't know, but I want his rights and "personhood" argued for as a member of the autism tribe.

I don't want his existence to be seen with pity and despair. I see his inclusion in schools and society as a civil rights issue. There is nothing in the work of ASAN that runs counter to these desires.

On the other hand, I do believe that parents of significantly challenged individuals do have something to add to the discussion. A big part of my life revolves around educational team meetings, therapeutic services and fighting for least restrictive settings. I'm not sure if anyone but a parent who fights for these issues can understand my perspective.

The big thing to me is that all of the members of this council must be willing to listen to each other and acknowledge the validity of each other's viewpoints. I'm not sure if that is or isn't the case for Ari, but I feel sure that there needs to be autistic representation on the council.

— added by A BCPSS Parent on Monday, March 29, 2010 at 4:33 pm

Don't know about all the arguing thing but I do know of other parents who have sworn by this or that and none of them worked for my son. Not one. Meaning, nothing helped his autism, and yes, my son in my opinion is disabled. I agree with whoever stated they live with it every day and are too tired to argue with anyone about anything. That's my life, too. But, one thing I cannot stand is seeing Jenny McCarthy on another talk show blabbing away at how she "cured" her son of autism. Another tired stereotype about autism.

— added by Sharon L. on Tuesday, March 30, 2010 at 4:01 pm

I don't have anything against Ne'eman personally. It seems he's doing a great job with his autism self-advocacy work. I see what he is doing as having no relationship to what is needed and happening for my son. My son is 6 and totally nonverbal and very ill with a type of autism that is quite different than Ari is experiencing. So maybe you are right Susan that we need someone else in addition to Ari- I don't know. There are certainly other autistic people that are more mature and experienced than a 22 year old college kid who has no life experience. I remember being 22 and though I did not have autism, just by being 22 I was pretty self-absorbed and lacked genuine sense about the world. As I've aged (and experienced life) I've learned that I don't have all the answers that I once thought I had. You learn about the gray area. I highly doubt that ANY 22 year old could understand autism and the different manifestations and challenges. He and my son may share this extremely broad diagnosis but that is about where their similarities end.
How about John Robison?
If Ne'eman does get appointed, then he should have to spend a week or two exploring different people on the spectrum. I don't mean just talking to a focus group or reading a book. I mean volunteering and getting hands-on with kids or better yet adults who have severe autism. He's welcome in my son's classroom of 8 nonverbal K-2nd gr., hope he's not squeamish about fecal smearing or changing a 9 year old's diarrhea pants.

— added by Anonymous on Tuesday, March 30, 2010 at 4:49 pm

You sound bitter and jealous Sharon T. That doesn't help our kids.

— added by Anonymous on Tuesday, March 30, 2010 at 5:33 pm

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