Thursday, September 25, 2008

Jenny MCCarthy and Autism Acceptance

A couple of days ago, Orac enticed us with an offer:
Ask Jenny McCarthy a Question!

(Steve Raises Hand, a la Horshack of "Welcome Back Cotter" fame)

"Ooh!, Ooh!, Ooh!"

I have a question for Jenny McCarthy! I guess this one applies to Jim Carrey as well, as he has assumed the fatherhood role for young Evan McCarthy.
(Jenny and Jim are Mom and Dad. Good for them, and I wish all three the very best in all things. But I certainly wish Jenny and Jim would stop promoting the ideal that Toxic Autism is Bad.)

My question is this:

"Jenny, have you considered the impact of your publicity-driven actions on the future self-image of Evan?"
(Consider: Green our Vaccines rally, Oprah Winfrey appearances, Generation Rescue Board of Directors, etc)

Let me explain why this is of concern. Evan is a growing boy. If we take you at your word, Evan is a recovered autistic. He was autistic and now he is not autistic - he is typical. Through your actions as a Mother Warrior, you have pulled your son from the brink of the abyss, and he is now free to pursue his life's dreams as a non-toxic, normal person. Okay.
So what happens - now that you have staked your professional reputation on his being absolutely "typical" - when he has some struggles at school? If you take him to a birthday party with other kids his age and he is sitting off to the side, not really interested in their collective social excitement? Or maybe a kid approaches him and asks what class he is in, only to be met with a very animated stream-of-consciousness about his preferred topic of conversation. In that same setting, maybe the noise and excitement are a touch disconcerting and he begins to jump-spin (a combination of jumping and spinning that is somewhat "dangerous to self" and nearby "others").
You see, Jenny, most of us parents of kids who are on the autism spectrum have little ways of dealing with situations like this that fully allow for our kid's neurological/perceptual uniqueness while capitalizing on "teachable moments". Jenny, we can do this because we have not staked our personal dignity or professional reputation on the expectation that our child will not exhibit autistic behaviors.
As an example, just today - after work - I myself took J to a local pizza place for a classmate's birthday party and managed the jump-spin and sitting-alone scenarios. I then took him to soccer practice where the sensory/lying down drive was dominant and lack of desire to play with the team was blatantly obvious. All this with a boy who most casual observers would consider to appear as "recovered" as Evan may be.
Fast forward a few years. Evan is really growing up now. He's hitting puberty, and is contending with all of the challenges that come with it. Now he is really expected to fall in line with his peers. Pack mentality rules. Awkward or non-conformist behavior is met with derision. Especially for a kid with such high-caliber social parents. Especially for a kid whose Mom has been a professional "Babe". How is Evan going to be dealing with the wrinkles of his (formerly) autistic neurology then? Will his very publicly announced transition from the world of "autism" to the world of "typicality" (as documented by his "warrior mom" in books, magazines, and TV shows) cause any consternation at that point in his development?

I don't know the answer to any of these questions. I'm not really expecting to get the answer here. I do ask the reader of this blog to consider the term "autism acceptance " in the light of this post. This term can be reduced down to admitting that a diagnosis is correct, but can also be utile in considering the overall set of factors that influence quality of life at various points in a person's development. I wish Jenny McCarthy had factored in this second definition before deciding to exploit her beautiful son, Evan, as the First Child of autism recovery, and thereby set the stage for intense internal conflict in him for years to come.


Sharon said...

I was wondering the same thing a few days ago when I was reading yet another book about "defeating" autism, and wondered how the child discussed will feel about passing as non-autistic. The problem for Evan will be much greater, like you say, his parents are famous so he'll be under the spotlight far more than other children and young adults, even others whose mothers have written about them.

I hope he manages and comes out of it all feeling good about himself, in spite of what his mum is now doing to him.

Jen said...

Very interesting post- there are certainly ramifications to every decision that we make as parents. I do very much hope that Evan has at least a few people in his life who care enough about him to give him support when he needs it.

Foresam said...

Autism acceptance is a term for quitters. Winners beat the autism.

Anonymous said...

Foresam, even when we refuse to accept the unacceptable, it has no bearing on it's existence.

The only thing you've been able to beat is your own humanity.

Jennifer said...

Thank you! This is wonderful, and exactly suited to the strange situation Jenny must find herself in. Shall I take Evan with me? But what if he has a meltdown? What if he hops and does stereotyped movements? Will I be embarrassed?

God help us if she succumbs to embarrassment after choosing a boyfriend who purposefully attracts embarrassment!

Anonymous said...

I'm grateful for this post. I was miffed from the beginning by the "arrogant" tone Jenny had on Oprah. I am very much so an advocate for autism and improving my children's quality of life. But I am not trying to "fix" them. We do use GFCF guidelines and we have seen improvements, but I too have improved my health since being on it too. Does it have to be associated with autism? Isn't true that a healthy diet can sharpen our mind and allow us to process things better and minimize irritability? What a very convenient side effect for us.

Do I want to minimize stereotyped behaviors? Of course I do, because that will improve the quality of his social life, whether he is aware of it or not. I parent my children the way I would if they were not on the spectrum. Actually, I might have to confess that I'm a BETTER parent because they ARE on the spectrum.

I used to worry about acceptance but now that I have the attitude MYSELF that it is okay, I have noticed that others in my circle follow suit. Why would I want them to view my life as "so difficult" when it is not? My trying times of being a parent are no greater than other parents. They are just different. It does not make us better off or worse off than any other family.

Ok, I'm stepping off my soapbox now....

Anonymous said...

Oh, and since taking casein out of my kids diet has improved their digestive system, then I say "poo on foresam"


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