Wednesday, March 10, 2010

Autism Acceptance

There is a lot out there on the subject of "autism acceptance". There is even something called the Autism Acceptance Project. And NPR did this story on autism acceptance. I think these types of sites and initiatives are great. I am all for autism acceptance, although maybe not in the way some people mean. What does autism acceptance mean? That is the tricky question.

When I first heard the term, I thought it referred to accepting the fact that your child (or you) have autism or are on the autism spectrum. There are certainly a lot of people in denial, as is common with potentially devastating information. It is a form of self-preservation. For me, personally, this has been quite tricky since Alex is one of those kids who gets a different diagnosis every time we go somewhere for an opinion or evaluation. He has had 3 formal evals by qualified professionals. One diagnosed high functioning autism (possibly Asperger's), one diagnosed ADHD with possible Sensory Processing Disorder (confirmed by an OT) and one diagnosed ADHD with Expressive Language Disorder and sensory seeking behaviors noted. So...clearly "something" going on but not so clear exactly "what". So....I don't want to go around saying my child is autistic if he is not but I also recognize he has many "spectrummy" qualities - he is on the edge of the spectrum somewhere, no doubt. I accept that and even go so far to say he is "on the spectrum" because I think he is. Autism acceptance, right?

Actually, autism acceptance usually refers to accepting autism as a "difference", often referred to as "neurodiversity". Many people think autism (especially Asperger's) should not be thought of as a disorder. Temple Grandin, a prominent person with autism has said she thinks autism is a gift. She thinks she would not have accomplished what she has without it. She is very likely right. I think she is incredible and I'm glad young people with ASDs have her to look up to. No doubt she has postively influenced many parents and children affected by autism spectrum disorders. However, I just don't know how I feel about autism being a gift. I am glad she feels that way and she may even be right. I will admit I wish my son didn't have this "gift". It is one I wish we could return.

What does autism acceptance mean to me? To me, personally, it means accepting my son's limitations and gifts, the same as I would with my 3 NT children. We all have our strengths and weaknesses. One of my most important jobs as a mother is to nurture their gifts and strengths, help them develop areas that need work, and accept that they are not perfect. So, while I accept that Alex has limitations that my other kids don't have, I also believe that some of these limitations are due to a DISORDER. Because I do believe that autism, Asperger's, etc are disorders. Hence the term autism spectrum DISORDER. I don't think it is merely a different way of thinking or being. I really believe there is something "wrong". And if I had the opportunity to take it away, I would. I think Alex would still be Alex without the ASD. I don't think it defines who he is. I respect parents who claim they would not change a thing and believe that the ASD makes their child who they are. It is valid point of view. I just am not there. If I could take away my son's difficulties with making friends, complex motor skills, language, and sensory integration, believe me I would in a second. Because I think life is going to be harder for him than it is for my other kids - heck, it already is. Who wants that for their kid? Who wants to watch their kid struggle? My son is a very happy boy. I hope and pray that he continues to be.

Parents of children with other disorders don't go around talking about acceptance. As far as I know there isn't discussion of acceptance of other disorders as simply a variation of normal. Why is it the case with autism? I know most of the discussion centers around high functioning individuals and not children who are severely affected, but even mildly affected kids can have serious problems functioning in the world. And most kids with ASD are mildly/moderately affected. The reason these discussions bother me is if HFA/Asperger's are accepted as variations of normal, there is no incentive for research into a cure or REAL treatment for autism. And this research is woefully underfunded now.

Then, of course, there is the other end of the spectrum (pun intended) - those parents who literally risk their children's life trying to "cure" autism. I will leave that discussion for another post.


  1. I don't understand what would be wrong with preferring your child didn't have a difficult path, whatever it may be. It's not denial or refusing to accept, it's just what we all want for our kids.

    For some reason the analogy of having a son or daughter who is gay comes to mind, not that it's a disorder. To me it relates because even if as a parent you are accepting, you know that their path will be more difficult than if they weren't and you wish that wasn't so.

    I hope you know what I mean.

    "One of my most important jobs as a mother is to nurture their gifts and strengths, help them develop areas that need work, and accept that they are not perfect."

    I love this sentence, especially the "accept that they are not perfect" part.

    Incentive for research is a very important thing to protect, I totally get where you're coming from saying this.

  2. Hi Kris,
    I saw your comments on Campbells blog and wanted to tell you that you and I have very similar intentions. I am also an AP who loves it and sees the great side of it, but am so grateful to have my eyes opened to the loss and the potential things my children may experience as a result of being adopted. I lurk around on these blogs for perspective but then always am happy when I turn the computer off and just enjoy my kids!
    Anyways, it was great to read your thoughts.

  3. I think this is a really tough issue. I still haven't made up my mind on whether I would take away my son's autism if I could. But I can't, so I'm trying to put as much energy as I can into helping to make the world accept him. And I DO believe that autism, while it does include many, many deficits, gives him some gifts as well.

    Very thoughtful post.

  4. Shannan - Thanks for stopping by! I have learned so much about adoption from the adoptees who blog and between that and finding my daughter's family, I have really changed my mind about a lot of things adoption-related. However, like you said, sometimes I do just like to turn it off and enjoy my daughter. Nice to meet you!

    Stimey - Great way of putting it - "put as much energy as I can into helping to make the world accept him." That is a great perspective! I totally agree with that! And from what I have seen of your blog - you are doing A LOT in that area!

    I'll be honest, most days I have trouble seeing the gifts, is that awful? My son has many gifts, but they are ones he would have without ASD. He isn't the Asperger's kid who has an intense interest or ability in something. His symptoms are very sensory-related (very sensory seeking). I struggle with finding the good. I hope I "get there" - maybe I haven't totally accepted it yet??

  5. My son is also somewhere "on the edge of the spectrum". All I can say is that I hear your anguish and that you want the best for your son. I think that's OK.

  6. Hi, I was intrigued by your blog name. People often refer to our son as 'borderline'...but like your son, nobody has quite figured out or agreed upon 'borderline' what. It's also interesting because we are looking to adopt also. Hope you don't mind me stopping by now and then to hear how things are going with your family.

  7. Keri, Not at all. Thanks for stopping by and please do any time!!