Thursday, January 04, 2007

Autism Speaks' Alison Singer on the word Cure

Alison Singer of Autism Speaks wrote a thought provoking article that's posted on their site. Click here for full article and more articles on the word 'cure'. Ami Klin of Yale has an excellent post here as well.

As always, I'm always interested on the topic of Autism factions. I have such disdain for fighting within the factions, and feel strongly that we must continue to find ways to understand other parts of the spectrum and above all, respect fellow ASD parents and their children. Ms. Singer is an Autism parent. So in my book, she has my mine! Here is a part of the article that rings true for me:

'Her (daughter's) pain is heartbreaking and I pray every day for a cure. I do not use the word cure to insult other people on the spectrum. I use it because it accurately conveys my hope that one day, her constant struggles will end and she will know a different, pain-free life.

Use of the word cure holds particular meaning to parents whose children suffer regressive autism. These parents I often feel suffer the most, as they had a glimpse of their children before autism. These parents seek a cure because they remember the child they had and want him back. (regressive autism)

Autism Speaks' constituency tends to be dominated by parents of lower functioning children because many parents of children who are diagnosed as high functioning enough to be mainstreamed do not want to be associated with autism because of the stigma that is still attached to the disorder and for fear that their children will suffer from the label. Thus, our community does tend to be dominated by the faction of parents in search of a cure.'

It's true for us. When I first read this, I felt ashamed. Why am I not out there pounding the pavement in the name of the HF mainstreamed child? True, if I existed in just my little faction, I could say we are very undersupported in the funding department. I agree wholeheartedly! But, let me see...Oh right, I can't go down to NBC and march around making noise, advocating for "our" piece of funding that would affect a child that is more like Leo than not. Children that have a parking spot close to Leo's, that is mainstreamed and/or recovered, has little/no supports, and his label hidden. If I did, this would jeopardize Leo's life. How do I know this? Because I see discrimination all the time at school. It makes me crazy that we are still here in this place, treading water. Leo and many other children must stay anonymous (keep their label a secret) so they can lead a life without discrimination and the negative stigma that prevails STILL.

Indeed, I agree with Ms. Singer in that the Spectrum is indeed wide, and that there is a lot of confusion with semantics. I can see she loves her child and wants the disabling aspects of Autism aggressively addressed. Like most of us! However, we part ways when it comes dividing the Spectrum. There was, at least years ago, talk that ADD, ADHD, and NVLD would join the Spectrum, with "processing deficits" being the glue. Keeping the spectrum a spectrum makes sense to me. The more we pigeon hole the less we'll be focusing on each individual. We raise the risk of parents losing their choices in therapy options. Insurance companies, the government, and pharmaceutical companies will delay or prevent a potential viable treatment option from being attempted. Now THAT'S heart wrenching!

Each person with ASD has their own special blend, courtesy of genes and environmental factors. A special blend of ASD that requires a special blend of intervention that's designed just for them. While our kids may function on different parts of the Autism spectrum, what unites us all is the love we feel for them, and the deepest desire in every parent that their child can enter adulthood equipped with skills to succeed in life (whatever that means for them!)


Anonymous said...

Little supports? It sounds from your site that your son got plenty of intervention and supports to the point where he recovered. I feel for the children who will never lead the life your son is leading and are receiving little or no intervention despite their parents' best efforts to advocate. I see it everyday.

Ashley loves Leo said...

Hi Anon, I couldn't agree with you more. It is heartwrenching to know that parents do *everything* to relieve the disabiling aspects of ASD to no avail. Why did Leo respond so well to so many things, while others don't? (This is a rhetorical question but it'scrazy making).

Yes, fortunately for us, Leo had so much support! We had to fight like hell to advocate against discrimination we faced daily. Most HF kids that have no academic or behavioral issues that affect OTHERS are seen as "less worthy" in receiving services even by well meaning professionals and school districts.

Most Recovered children seem to have residual issues that need support (therapies, biomedical treatments like supplements, enzymes, speech, OT, whatever).

So what I meant to say is that for each child that is similar to Leo, they may still have therapy or may not, the needs being different for each of them. (I was attempting to describe children like Leo)

Leo requires no therapies, but still has GI/immune issues that need management. But hey, I'm not complaining!

If you are a therapist, THANK YOU for making a difference to our special children!

Laura said...

Ashley, it is hard, isn't it? Even though my son is still very much autistic, I feel almost guilty when I compare him to other kids with Autism who are lower functioning, like the son of a good friend of mine, who is non-verbal. But Hutton does needs therapy, and I'll continue to push for getting what he needs! Higher functioning kids still need treatment as much as lower functioning, and we shouldn't have to pick which end of the spectrum kids get treated - they should all get the treatments they need.

Ashley loves Leo said...

I hear ya Laura. Very well said.

Þorgerður said...

I have to thank you for this blog. I just need to know and be reminded that recovery is possible and I purposely try to seek out that reminder. What ever the future may hold. thank you for that reminder.