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
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
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
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