The Silence of Our Friends

Sunday, December 16, 2007

Autism

UPDATE! In comments Amp left a link to The Gimp Parade where there is an announcement that the NYU Child Study Center has put an end to the ransom notes campaign due to the huge amount of calls, letters, and emails they have received from the disability community and their friends. So a big thank you to all who participated!

Ms Crip Chick has a post up about an ad campaign for the NYU Child Study Center. It contains ransom notes insinuating that disabilities kidnap people. What's worse is that these notes contain the wrong information. For example Autism -
We have your son.

We will make sure he will not be able to care for himself or interact socially for as long as he lives.

This is only the beginning.

Autism


My oldest son has an Autism Spectrum Disorder. His actual diagnosis is Hyperlexia PDD/NOS (pervasive development disorder/not otherwise specified). He is awkward socially, but no more than any other teen boy. It hasn't stopped him from having dozens of friends. When he was really young I avoided giving him his actual diagnosis, I didn't want him to learn from others - what he couldn't do. And so he didn't know that he isn't supposed to have alot of friends. He didn't know that he isn't supposed to be a good student who gets mostly Bs and Cs with occasional As. He didn't know that he isn't supposed to love and be loved. He didn't know that he is supposed to be helpless and silent.

I was afraid of moving from Wisconsin to New Hampshire. I worried that my sons would have a hard time making new friends. Their friends in WI they knew since grade school. And I worried that here in NH these kids would already have their friends they knew since grade school and not make room for the new kids. I forgot to give my oldest his lunch money one morning and when I got to the school he was already in the cafeteria. I came up behind him to give him the money and he was holding forth at a table full of kids, remember this is the autistic kid, who supposedly can't interact socially for as long as he lives. He also has a girlfriend already. I didn't have to worry. They both have new friends, and keep in touch with old friends by phone, and those internet networking sites like myspace, facebook, as well as instant messaging.

These ads are not helpful. They instill fear, in those who have developmental disabilities, in their parents, in society in general. What these people need is strategies for coping in a world built for the able, or information on what services are available and how to get them, not negative stereotypes that tell them what they can't do or be.

Please read Ms Crip Chick's post and write to the NYU Child Study Center at the address provided. Thank you!

16 comment(s):

Hi Donna, yeah I've been reading about this at Miss Crip Chick's and Bint's and The Gimp Parade, it is truly unbelievable. I might have to formulate my thoughts and post my first piece focused on disablity and ablism, something I've been thinking about a lot lately from my weird radical Taoist-Buddhist perspective. Asian angle and all. We'll see if I can come up with something...so many things I wanna write about, so little time...

But anyway, it's good to hear that your kids are adjusting so well to the move. Hope you're doing well yourself. :-)

Peace.

By Blogger Kai, at 12/17/2007 2:03 AM  

Hi, I have a low functioning autistic son. These ads don't even begin to show the true nightmare of autism. I also live in NH where the state refuses to give autistic kids the treatment they need to improve. These ads can only help the public understand how horrible autism is.

By Blogger Foresam, at 12/17/2007 12:16 PM  

When I saw the ads, I was immediately struck by how gendered they were as well as the misinformation regarding Autism, Asperger's, etc.

Also, as a person who has lived with depression and anxiety and currently is working through PTSD, the ransom note for depression angered me because it appears to place blame on the parent and sufferer for not doing anything. "Do nothing and see what happens" does not sound productive, but rather ominous and threatening. There are better ways of educating people on these subjects and how to be proactive in a healthy way about them.

By Anonymous Daomadan, at 12/17/2007 1:54 PM  

i actually just received a really insulting comment (that i did not allow) from a person with autism in support of these ads. the internalized shame different communities have is unbelievable sometimes and it's important to keep posting about things like this.

glad to hear kai might do one, aaminah just posted about ableism and the muslim community :)

nice to know you're part of the fam!

By Blogger ms.cripchick, at 12/17/2007 7:11 PM  

great post donna.

do you feel it was best to keep the diagnosis from him, then, or no?

i ask because i can understand that impulse. not wanting to label. to confine them. but then you say if cut him off from community like him? so do you feel now its better to tell the kids what their accepted condition/label is? my youngest son is on this spectrum, tho he doesnt live with me. and my impulse was the same...dont push it on him. help him, but dont push the reflex to pathologize every action...what are your thoughts today on that?

By Blogger nezua limón xolagrafik-jonez, at 12/19/2007 1:57 PM  

I'm bummed! My son broke up with his girlfriend. He said it didn't work out. When he saw I was bumming he said, "Don't worry mom. We're still friends." He cracks me up.

Kai, I can't wait to read what you come up with about disability and ableism.

Foresam, It's a nightmare and horrible because you can't find the support and accomodations your son needs. I don't know what to tell you because my son's IEP was set in Wisconsin and the school here is following it and giving my son the support he needs. Get the address for the autism advocacy center from ms. cripchick's post. It's there and contact them about getting what you need for your son.

If all these ads do is help the public to understand how horrible disability is, then they are doing your son no favors. It gives the public a reason to hate and fear him not help him. That is the problem in a nutshell. If they wanted to be useful they should have been telling you where to go to get the accomodations your son needs and tell you what your son's rights are.

Daomadan, good to see you here. I agree with your comment. I do think they blame the parents and disabled children too or make it seem hopeless.

MCC, ya know I lovez ya!

Nezua, I only kept it from him up until middle school. I did think it was good for him and he wasn't cut off from community or children like him. I just told him he was learning disabled and he met all kinds of learning and developmentally disabled kids at his school. The way he processed it was that he had a little harder time learning compared to some other kids and that he sometimes needed help. That's all he really needed to know then. I didn't want him identifying with one child's struggle over another, I'd rather he saw each of his peers as an individual, and himself as an individual too.

By Blogger Donna, at 12/19/2007 4:24 PM  

Did you see that the NYUCSC has given in? Due to relentless criticism from activists, they've pulled the ads, and have said that future ad campaigns won't be created without "dialog" with disabled people.

By Anonymous Ampersand, at 12/20/2007 9:50 PM  

Thanks so much, Amp! I've updated the post.

By Blogger Donna, at 12/20/2007 10:06 PM  

Foresam is a troll, he's been trolling every single autism blog and forum out there for years with the same old crap. His favourite pastime is "speaking for" his (possibly non-existent) son in ways that make it clear he considers that son (if he really has one), and all others like him, to be inhuman and unworthy of existence. Here's an example of his hate-spewing: http://www.wrongplanet.net/postt50997.html

Just to warn you...

Having said that, i do think that your son is either very lucky or has a very unusually tolerant/accepting/welcoming home and school environment - while it's undeniably not as bad as demonisation like the "ransom notes" campaign, i do also think that saying "autistic people are no different from anyone else, and would be just as socially successful if they weren't labelled" is (or can be)... unhelpful - because we, or at least some of us, *do* actually have difficulties that are not caused *just* by stereotyping and discrimination. Not that we would necessarily like to have those things "cured" or "removed", but IMO it needs to be recognised that impairment continues to exist even if disability (in the sociopolitical sense) has been overcome.

I need to blog about the "whether kids should be told their labels" debate...

I'd heavily recommend http://ballastexistenz.autistics.org (and the whole of the autistics.org site) as a starting point for autism-related stuff...

By Blogger shiva, at 12/21/2007 9:23 AM  

Oh yeah, incidentally (as reported on Miss Crip Chick's blog) the "Ransom Notes" campaign has now been withdrawn due to public pressure :)

By Blogger shiva, at 12/21/2007 9:24 AM  

thanks for the experience, donna.

By Anonymous nezua, at 1/02/2008 10:24 AM  

Donna, your son sounds like one cool kid. I tend to think it's bullshit when people make these comments about kids along the autism spectrum as being unable to form and maintain social relationships with others. I know more kids without autism that have problems making friends. I think that what really goes on (when some kids with autism don't have friends) is really disability prejudice in most cases. The problem is the non-autistic kids.

By Blogger bint alshamsa, at 1/15/2008 12:01 AM  

I'd question that diagnosis. My son was diagnosed with the same stuff, and he turned out to be profoundly "gifted" instead. There is an epidemic of overdiagnosing autism, and underdiagnosing giftedness in children of color. both happened at once, in our case.

By Blogger Alisa Valdes-Rodriguez, at 2/01/2008 2:50 PM  

OK...SO here I sit today in my office after a parent-teacher-principa-special ed teacher meeting about my son. He has some sensory issues which are very mild and perhaps a little auditory processing which really is bs to me. I know my child...period. He is not have autism spectrum whatever and even his doctor thinks his teacher is crazy. He is 5 and show and has no signs of autism in any way shape or form. He has friends, manages well, great fine motor skills, reads, plays soccer, very adaptable and I could go on for days so why do schools do this? A kid can have a stand alone sensory issue without having autism...bottom line! As a frustrated mother what advice can anyone give me that is new?

By Anonymous Anonymous, at 3/04/2008 2:41 PM  

Would it be possible to get a referral from your primary care physician to see a child development specialist? I know this is easier if you are near a city with a major children's hospital, so hopefully you are? When my son was diagnosed it was at the Childrens Hospital in Milwaukee and I think they did a great job making sure he got the right diagnosis and that it couldn't be something else. It really does sound like you need a second opinion anyway.

By Blogger Donna, at 3/04/2008 3:07 PM  

Hello guys autism is very common in this days but this is more difficult in men than women and the ED is other disease difficult in men but they have the solution with Generic Viagra

By Blogger Brian, at 9/25/2009 5:12 PM  

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