Jun 10 2008
“Autistic and Proud” on Good Morning America
image of Ari Ne’eman from GMA interview
This morning, Good Morning America aired an interviewwith Ari Ne’eman (who, by the way, is an adult with Asperger’s) of the Autism Self Advocacy Network and Kristina Chew of Autismvox. They spoke about how instead of being so preoccupied with finding a cure for autism, society needs to take a step back and recognize the unique gifts that autistic individuals have to offer. We need to improve services and support for autistic individuals and not necessarily to fix what’s not broken, except in society’s narrow view.
I can understand both sides of the issue, as many people commented at the GMA site. With children severely effected, it can be very difficult and heartbreaking to not know how to help an autistic child cope. At the same time, with the right supports and services, they can progress and even thrive. Autism is not the sea of despair that parents are often told it is when they hear that first diagnosis. We’ve seen many instances of individuals who have lived with the condition their entire lives and have done well. Education, support, acceptance - these things are key, whether or not a cure is ever found. I think the point is that society has spent so much time chasing a cure that we are missing what’s here and now in front of us.
Maybe if I believed a cure existed, I might feel differently, but I’m mostly ambivalent. I hate having my son on medication, but I want him to be able to go to school without being made to feel like a failure because he needs constant redirection. It makes him feel badly about himself. That is unacceptable to me, much worse than the fact of his autism. I’d certainly prefer that he be given more help than a pill, but it’s not there yet.
Many people will be angry with what Ari and Kristina had to say. I’m not; I think they make very important points. We can’t ignore the present for dreaming about what may or may not come in the future. Autistics need acceptance and support now; it’s something we can start to provide now. A cure is not.
Eep, I missed this! I’m going to have to check the GMA site. Kristina Chew is one of my favorite autism bloggers. She really researches issues and I love the way she writes.
Well, I haven’t had to work with autism as a parent, only as a teacher, and I’m lucky because there are over a dozen autistic students at my school in both the self-contained and inclusion classes, and they all have assistants throughout the day, guiding them and redirecting them and allowing their teachers to teach them more effectively. They are neat kids, and they all have their own gifts. A cure, however, might spare a lot of children and parents a lot of pain, particularly of those on the severe end of the spectrum.
I thought of you last week - did you see Jenny McCarthy’s march on Washington? What are your thoughts on autism and vaccines? The one most often linked to autism - MMR, I believe - will be coming up for us soon, and I’ve often wondered about this crazy vaccine schedule such tiny little people are on!
I remember how tough it was when my son was first diagnosed. That was when he was at his most frustrated, struggling to communicate and stuck in this very scary place where so little was within his control. But he grew. He still struggles, but he’s adapted - without a cure and without medication until a few weeks ago. Does it seem callous to suggest that struggle builds character? I think we’ve both become better people for it, but that’s just my way of seeing it. I also remember the scarier moments, so I don’t condemn anyone for wanting a ‘cure.’ Just yesterday, my brother was joking that he’d like a pill to keep his youngest from wandering off.
If there’s a segment of society that wants to look for a cure, go for it. But let’s also deal with what autistic individuals have to deal with now. Let’s educate the public on all aspects of autism, not just the scary ones. Maybe then kids will stop treating my son like an alien; maybe they’ll stop calling him names on the playground or yelling at him for stepping in their sand pits. Maybe people would stop giving us those looks - too many kinds to describe.
As for vaccines, I was freaked out when I first started reading about them and mercury, blah blah. My reality is that my son always had traits. I don’t think vaccines had anything to do with who he is. And,just like I wouldn’t let him cross the road without holding his hand because I don’t want him to get flattened by a car, I wouldn’t want to lose him to an illness that could have been prevented. I don’t know about ‘green vaccines.’ Fine, make them safer, if that’s what it will take for people to vaccinate their kids.
As for your little one, you have to decide, but I will tell you that I had my daughter vaccinated exactly the same way as her older brother - I was given the choice to split up the vaccine & chose not to. I didn’t want her to have to get poked 3 times instead of 1. She’s perfectly fine if it makes any difference.
Well done Ari and Kristina. I am so proud of my daughter and friends with ASDs and of all the people I know with ASDs. We don’t need to cure our children - we just need support and understanding. How insulting, to suggest that we cure our children of themselves! Sure, we have our challenges, but we also have rich and myriad gifts in our Autistic World - it’s a pretty great world to live.
My 8 year old has Aspergers and we work on the positive side of what makes him different, as well as starting to help him identify the negative aspects.
It’s not always easy, but it helps to show both this child, and his non-autistic little brother, that all people are different and to accept them as they are.
Katie-Anne