Attitudes & Big Organizations
December 27th, 2006I’m amazed every time I stumble across support groups for parents of children with Down Syndrome.
What amazes me is the obvious joy many of these parents have in their children. You can sense, much of the time, that they truly love their children, they are extremely proud of them, and that they want a society that accepts Down Syndrome as part of what “normal” means.
Contrast that with many groups for parents of autistics. Is there even a single local support group that is focused more on inclusion (true inclusion, not just throwing someone into the deep end of the pool with the other kids) than on therapy, treatment, and cure? I’d love someone to add a comment indicating such a group (you can’t include anything that starts with http:// in the comments – so just give the part after the http:// if they have a website – for instance, thiswayoflife.org/blog).
The big organizations make the contrast even clearer.
Visit the National Down Syndrome Society website. After your first 30 seconds of looking, what do you think their message is? Look for things like, “Is Down Syndrome a life-ending tragedy?” “Would these parents ever think of murdering their kids?” “Are these people a burden on society?” “What do the parents want, a cure or inclusion?” “Can people with Down Syndrome live great lives?”
Now visit Autism Speaks. After 30 seconds of looking, what do you think their message is? Look for the same stuff you looked for above – “Is autism a life-ending tragedy?” “Would these parents ever think of murdering their kids?” “Are these people a burden on society?” “What do the parents want, a cure or inclusion?” “Can people with autism live great lives?” It probably won’t answer all these questions in 30 seconds, but the ones it does answer are illuminating.
Now go back to both the sites and see if you can find out “what” the condition the site is based around “is”. So, “What is Down Syndrome?” “What is Autism?” Now, ask yourself, was the description neutral, negative, or positive? If you had the condition being described, would you feel bad, or good about yourself? Perhaps neither?
On the Autism Speaks site, I found this page. It talks about the deficits of autism and the critical need for early intervention. Not very cheerful, in fact it is downright depressing. If your child has autism, he won’t “catch up”. He’ll be left behind.
Compare that with the National Down Syndrome Society description of Down Syndrome, on this page. It gives a pretty neutral description of what Down Syndrome is, avoiding negative language (no “deficits” or “impairments” are mentioned, unlike the Autism Speaks page – the closest this page gets to negative languages is describing the extra chromosome as an anomaly). But then the tone changes a bit, from neutral to very positive. It notes that there are opportunities for people with Down Syndrome that didn’t used to exist, and that people with Down Syndrome are part of our communities – no matter what part of “community” someone might think is important. It counters some stereotypes – people with Down Syndrome can and do go to college! You can have dreams for your kid! (I didn’t see any hope for parents in the Autism Speaks description of autism) It closes by noting that society isn’t as accepting as it should be, but at no point does it place any of this lost potential on the fact that someone has a diagnosis – it’s society, not the diagnosis.
Interesting, huh? Some might say these Down Syndrome parents must have easy lives with no difficulties. But that isn’t true. It’s all about perspective, attitude, and acceptance. I’m not saying the Down Syndrome community or organizations are perfect – they are not. But it is nice to read something about a group of disabled people that doesn’t spend all its time whining about how miserable everyone is, hopeless everything is, and lost the people with the diagnosis are. It’s nice to even see a positive message.
I also want to thank and recognize the parents who have shown the world how wonderful they think their kids are, autistic, diagnosed with Down Syndrome, or neurotypical. I’m glad there are a few of them in the autism community, and I hope parents who are sick of the whining of many autism support groups can see these examples – and see that having hope and joy isn’t wrong.
Joel, I am still in contact with a girl who is considered “extremely severe”. She has never verbalized, wears a tracheotomy tube and needs help walking and has bald patches on her head etc etc. The most communication I can do is play “nerf ball” play little peek/eye-contact games. I don’t care about these issues and neither do a lot of people. They try to treat her nicely. Some might talk about her in front of her in third person but other than that, they are kind to her, people pitch in to take care of her. Where am I going with this?
I talked to her parents. There is a misconception out there that the more “severe”, the more “cure oriented” parents tend to be. This is not true but also sad in other ways. Her parents had given up hope. They didn’t want treatments because they knew all too well they wouldn’t do anything. They are resigned/have lost that kind of “hope”. Curebie parents I have seen have often had verbal children. The children may not totally make a lot of typical “sense” but they say words in sentences nonetheless. Some children who I cannot tell are given huge amounts of treatment attention. I never got any of that kind of stuff. It looks like they make a big deal.
Back to the parents then who have “lost hope”. They wouldn’t get rid of their daughter. They love her despite how difficult it might be for them. I don’t think if given a choice they would chose to abort their daughter now that they know her either. They wouldn’t think it polite to get questioned about it. They still have some attitude about autism though and they see anyone who has it better as “not really autistic” and they have some guilt/pity issues still but they don’t have militant cure attitude. They are like many people who are typically PC but ignorant about autism advocacy.
Anyhow, it does bother me still despite the fact they aren’t supporting the puzzles and cure now causes but at the same time, I don’t judge them much harsher than some other parents who are meaner to their autistic children. I would think many an autistic would be glad to have these parents, even if they were in another boat.
As you know, functioning labels are things I don’t personally believe in but I have my heuristic for how others will perceive someone. It goes something like: “If (non-verbal || dependant || appears that way) then low functioning” else “high functioning”.
Wow Joel, that is such a huge difference in attitudes and perceptions. I’d say we could all learn a thing or two from NDSS and parents of these kiddos. I loved the fact that they emphasized how delays were not “indicative of the many strengths and talents that each individual possesses”. I can’t imagine how many parents have went to the NDSS website and have been comforted whereas I can imagine how many parents have been to the other site and have left unnecessarily devastated.
I hate to stick up for “Autism Speaks” in any way, because I think they stink in many, many ways. However, it should be pointed out that you have mischaracterized the page that you link to them here. First of all, I (as someone who admittedly already has issues with Autism Speaks) read this page and find it to be extremely benign, and attempts to merely be clinically informative in its descriptions and information. Not cheerful and positive, but also not negative. The second point where you make an error is where you say that the page tells you that your autistic child will “never catch up.” This simply isn’t said on this page…they mention that ill-informed pediatricians may miss the proper diagnosis and proclaim that the child will “catch up.” This is clearly just an indication that doctors can and often do miss an initial diagnosis, and in no way implies that an autistic child will “never catch up.” With so many other ways in which you could impugn Autism Speaks, this one particular web-page example seems to be quite a reach, and a curious one at that.
That being said, I think that one could easily make the point that Autism Speaks could and should be more positve in a variety of ways. This one particular page just seemed to me to be a poor example…there is nothing wrong with a brief, clinical sounding overview. The site can much more easily be lambasted for it’s “Autism Everyday” video, in which they attempt to paint children with Autism as burdensome monsters who ruin their parents lives…that is the page that truly disgusts me from their website…just thought I’d clarify a bit!
As for autism speaks, an extremely literal reading might be “clinical” and non-negative.
However, I’d dispute that a clinical presentation of autism is a value neutral one. There is much more to autism then deficits and impairments.
As for the catching up comment, it clearly implies that autistics *don’t* catch up, therefor the doctor is “wrong”, etc.
On a different subject, regarding a different poster, it is my policy to, on my blog, not give a platform to people who speak hate speech. The person who’s post I deleted knows who he is, and can expect to see nothing of his posted on my blog. Thanks for trying though, and I was wondering when you’d notice me. Some of us have enough hatred in real life to not need any more online.
Hey Joel, thanks for the prompt reply! I respectfully disagree with your interpretations of that particular page from Autism Speaks…but really, they stink in enough ways that I can easily see how the page could be interpreted differently than the way I see that one page. Of course there is more to autism than deficits and impairments…but in a clinical sense, the page seemed pretty neutral to me…..nevertheless, thanks for your reply! Sorry to hear that someone is trying to junk up your excellent site with hate speech…Ugh!
As I mentioned above, the “medical model” clinical sense *isn’t* neutral. If I described a minority race, to a kid who had never met a member of the race, when the kid asked, “What’s a … person?”, by saying, “Oh, they are more likely to be arrested,” I might be stating a factual truth. However, that doesn’t mean it’s ethically neutral just because it’s true.
They are presenting the one part of autism that makes autistics look the most pitiful. If they presented other parts, such as “Autistics often have a fresh take on the world that is refreshing and original,” or “Autistics are able to remain focused on a problem long after others have given up” in addition to deficits and impairments, I’d be willing to concede “value neutral.”
But maybe Autism Speaks simply doesn’t know that there are good things, and will change if we educate them. Okay, maybe not.
Point taken. I will say, since they never make any effort to balance this fact out elsewhere, that the point has validity. I can’t argue with you that Autism Speaks always seems to be angling to make autistics look more pitiful….hence my utter disgust on the video they post…and maybe your right….maybe educating them won’t change them….
Maybe “you’re” right….sorry, I can’t tolerate making a spelling error!
Something to clarify. I wish the parents who told me they “lost all hope” would have some hope in the here and now because I think their attitude would reflect in the happiness of their daughter and she might have an even better life. As it is, they care for her but I think she can tell they are “sad” and I wish they’d get over the kind of “misery thinking” in some ways. In other ways though, I think they and esp her should have the right to feel bad if they want to but do see that too much just doesn’t do anything productive. She wouldn’t need any treatment even if did “respond”. One thing about the “diet promoting parents”, they seldom think about an autistic having to keep up with that diet their whole life. There is a great danger that the autistic may be too paranoid to eat anything. The difference can be survival and those who need to eat shouldn’t worry about becoming a little more withdrawn as much as they should worry about survival. I don’t buy the argument that withdrawing prevents survival per se either. Withdrawn people can still find food where as those who are dieting too much may have major problems later. I’m seeing it in kids right now who are becoming very skinny after GFCF and I thought about you too.
Don’t get me started on the GFCF diets…..Good point about “hope.” Those who “wish” to be miserable are probably just going to be fuel for the fire of their own self-fulfilling prophecy. Even when life isn’t great, finding things to be happy about and allowing yourself to feel happiness makes things so much better for everyone.