What is the Impact of Jenny McCarthy's Autism Cure Claims To Those Adults With Asperger's Syndrome?

Jenny McCarthy, a self-professed advocate for her son Evan, who was diagnosed with Autism, and for other children who have been or will be diagnosed with autism, has written a memoir about her experience "Louder Than Words: A Mother's Journey In Healing Autism"

The main thrust of McCarthy's memoir, aside from telling the story of a very dedicated mother who has fought hard for her autistic son, centers around what McCarthy terms Evan's "recovery".

McCarthy, appearing on The View, Live with Regis and Kelly, Oprah, and Larry King to name the shows I saw her on, in each interview first spoke of Evan as recovered from autism. She would then, later in each interview, sort of back track from the word "recovery" and point out that while Evan does now attend a regular school and interacts much better and so forth, he does still have challenges.

What is the impact, generally, of this on those with Asperger's Syndrome?

This might be a very difficult thing to assess. However, the specific autistic challenges that McCarthy's memoir deals directly with the journey that the intervention stategies, treatments, and interventions, of more "classically autistic children" require. While not agreed upon by all professionals totally, there are doctors who support McCarthy's strategies and results. Though the doctor who was on with her on Larry King was careful to say that results of these treatments vary widely in autistic children and the reasons for that aren't fully understood. It is agreed, however, that the earlier these alternative treatments are attempted the greater the likelihood of favourable results.

It seems to me that to some significant extent a lot of what is being fought for by McCarthy and others for their autistic children are things that most children with Asperger's Syndrome don't ever lose (totally). Things like some eye contact, speech, the ability, (on a wide spectrum that varies in degrees) to be able to relate and be interactive. The question that begs asking here is do those with Asperger's even require the same intervention? Will they benefit from the same things that McCarthy's son did?

What is the impact, specifically, of this on those who are adults with Asperger's (AS)

I know for myself, speaking as an adult with Asperger's who didn't find out until I was 40 years old, it personally causes me a little bit of grief. Grief that I didn't find out I had AS when I was a child. Grief that as a female much of what I was caused difficulty by was even more invisible than it is for most young aspie boys. Grief that causes me to wonder, briefly, how would my life have been different - or if in fact it would have been different - if in fact it would have been different - if I had a mother who went to bat for me (which I did not have at all) like McCarthy has for her son. Grief just thinking about the what-ifs which is not a place I recommend any adult with AS stay in long. But it is only human to go there at times. Self-reflection on these feelings and this grief, I think is necessary at times, for greater self-understanding, and in the end, a greater self-acceptance too.

How it impacts me, as someone on the specturm, who has Asperger's is that I wonder about the quest to normalize autistic children. It's a catch-22 of sorts. It hits at the question, are we all supposed to be the same? How does this desire and/or quest to make every child "normal" effect the way that we value or fail to value inherent differences? Does it send a message that what is perceived and defined by many as a disability is a less than way of being. This is an attitude that leads to discrimination and margalization of inherent worth.

McCarthy's memoir, "Louder than Words" (you can purchase it by clicking on the link to it in the left hand menu) does tell a compelling story. It does offer hope for a growing number of parents and their autistic children. The statistics now say that 1 in 150 children will be diagnosed with Autism. Those numbers keep rising. Autism, in all its forms, is an epidemic, in North America for sure, and perhaps also in other countries.

As an adult with Aspeger's Syndrome, however, it feels like a catch-22 of sorts to me - this entire issue of getting the most autism out of a child type of thing. For me being on the autistic spectrum continues very much to be an on-going paradox. It has its amazing aspects and it has its challenging, frustrating, and still at times, painful and/or emotionally difficult aspects for sure. The question that comes up for me is would I really want to be changed now if that was possible or ever to be possible? I think, in spite of everything, my answer is - no. I have come to value my differences. I have come to find ability from the depths of what are challenges and inherent differences between myself and those who are neuro-typical (NT). In other words I am finally finding peace with being who I am. I am who I am in all that means. Asperger's is not the some total of who I am but it is an important part of who I am.

I know that the important distinction (perhaps among many others) between Asperger's and more profound manifestations of autism - or classic autism - has a lot to do with the differences that those of us with Asperger's have in terms of being verbal, being able to communicate and not being "classically trapped" in a separate totally internal and separate world. However, I will make the point that there are times in my life, even now, when while I might know differently intellectually, there are times when being an aspie, primarily in the social arena, leaves me feeling like I know a little bit about what it might like to be that more classically autistic child. Socialization, is still, at times, and in many ways, for me, not at all like I've heard it described by NT's and it can still cause frustration, pain, and lostness. But, as this is my own personal journey through this life, I take it that there is great purpose, even in that.

I do at the same time very much recognize the battle and the validity and important of this battle for these more "classically autistic children" however. Many of them are reported to seem rather normal until a certain age (or set of circumstances - some believe after vaccinations for example) when suddenly they withdraw inward and they stop communicating, stop making eye contact and more and more are lost inside of themselves in more profound forms of "classic autism". To be saved from being trapped within I think is huge and important. To be helped to be able to communicate and to interact - to whatever degree - can make a life with autism much more liveable, especially for those around that child who love and want and need to interact with them.

The interesting thing in all of this too, in my opinion, is that much of what McCarthy talks about has having helped her son Evan, the wheat and gluten free diet, and addressing the yeast in his system, for example, along with the other methods used to "rehabilitate" him, referred to still as alternative treatments, do not work the same for all children with autism. Even all the children who are now able to take advantage of what McCarthy did for her son, the results vary widely. I wonder what information, if any, this fact, may well yield that may shed more light on the issue of whether or not what McCarthy's son and others like him have actually experienced. Is it recovery? Does it have to do with the degree to which they were autistic? Can this be measured? It seems in many ways, for me, to raise more questions than this held out "cure" actually provides.

And another question that crosses my mind is of course related to causation. Can autism really be cured without knowing what causes it? What leaves one child classically or more profoundly autisitic and the next with Asperger's Syndrome, for example? Are the causations different? I think that questions like this also need to be addressed.

Is Jenny McCarthy and her son Evan's journey revolutionary? Is it more typical than is known? Will it become more typical? Is it too cost prohibitive for way too many families?

And of course, I have to add here again, that there needs to be services and supports put in place for adults no matter where they fall on the autistic spectrum. Not every parent as McCarthy's fortitude, reserve, or even financial choices. Not all autistic children treated like Evan will have the same outcome. Therefore, it is not just adults with AS that need services and supports because today's aspie kids and autistic kids will be tomorrow's invisible adults on the autistic spectrum for whom service is only a wished-for thing and certainly is not, in reality, tangible in any meaningful way.

© A.J. Mahari October 2, 2007

as of October 2, 2007