Monday, February 23, 2009

Congratulations, you've got Autism!

Well, this is one post on autism that I never expected to see:

Life-Changing Benefits of Diagnosis

Accoring to Dora Raymaker at the site getting a diagnosis of autism isn't all bad.

So often a diagnosis anywhere on the autism spectrum is discussed in apocalyptic terms. The horror. The doom. Hearts sink and mouths go dry. That, however, was not my experience. Nor does it seem a common experience for people on the spectrum themselves.

The terms of "horror" and "doom" are appropriate for what the parents of newly diagnosed child do often feel. Especially if your children are very young. To deny that this is the case or to suggest that these are not valid feelings to be having is very harmful to the parents and very destructive to the process of dealing with a diagnosis.

If you are the typical parent you have daydreams of who your child will be when they grow up, what college they might attend, them getting married and having a family of their own. When you receive the diagnosis that future is torn away and replaced by a huge uncertainty about the future.

Instead of wondering what college they will go to you wonder if that will ever be able to live unassisted. Instead of wondering what profession they might choose you are left wondering if they will be able to support themselves. Instead of wondering who they will marry you just hope they will be able to have friends of their own.

Of course it might not be that bad - they could be high functioning enough to be able to function in society on their own or with minimal supports. They could go on to write blogs about how you should be happy to receive the diagnosis.

The future is not determined and who you child is has not been written yet.

But still, what you expected and hoped for your child is torn away and replaced with nothing but fear for what the future might hold and the desperate hope that it will turn out OK.

The post continues:

There are enormous internal, personal benefits to diagnosis. For the autistic individual, self-awareness is one of the necessary keys to effective self-advocacy and to empowerment. Without properly understanding your needs, you can't get them met.

If you lack the communication skills to even be able to understand what someone is saying to you how could you possibly even understand let alone be in a position to be self-aware of what the diagnosis means for you?

There are benefits to parents too--especially those parents who were wrongly blamed (at times by medical professionals even) for their child's behavior. Parents who maybe too felt guilt for doing something "wrong" that lead to their child's struggles. Parents who, given better understanding, are also now empowered to be more effective advocates for their kids, and better able to accept themselves as good parents.

Ah, so we parents should feel better because now we know that we didn't "cause" our children's struggles. Except, on the other hand we did cause them because autism is "caused" by genetics or being too old of a father or whatever the latest "pure genetic" theory of the day is.

I think Ms Raymaker forgets the fact that the majority of the people being diagnosed with autism currently are children. And while she does have a point that for the smaller group that are adults or have been misdiagnosed in the past that getting the appropriate diagnosis can be a good thing that does nothing to address the fact that the rest the group doesn't share this benefit.

I think if she wanted to be a true advocate for people with autism she would stop living in a fantasy world and come live in the real world where a diagnosis of autism is not a "life-changing benefit". It is a life changing event and not normally a positive one for those involved.


  1. I agree. As the parent of a 13 year old with Autistic Disorder, assessed with profound developmental delays, I can not glorify the reality that Autistic Disorder means for my son. Especially the future that awaits him when I am gone from this world.

  2. MJ,

    I just checked in on your blog and read your most recent entries.

    I think I understand your concerns but I also think I understand Dora Raymaker.

    I hope I will have time to try to write up some detailed comments soon.

    Arthur Golden of Jerusalem Israel