Monday, October 08, 2007

Jenny McCarthy & Autism

I promised to blog about my take on Jenny McCarthy's recent media appearances to discuss her book and her son's autism, from which she now declares him recovered. I've waited a while to comment on this because I wanted to catch more than one interview before forming an opinion. Plus, I needed to let the dust and my thoughts, settle first.

In a nutshell, here's my take.

Through her celebrity status, Jenny McCarthy brings tremendous awareness to this topic. God bless her for that!

Her celebrity allows helps her open doors to major media that most parents/authors/advocates only dream of. But I am concerned by the renewed focus on 'curing' children with special needs and/or 'recovery' and how such terminology may be interpreted by others.

I am not alone in my concern. In spirited conversations I have had with people since Jenny's appearance on Oprah and Larry King Live (among others), I've heard such concern repeated often.

This e-mail came to me from Lisa, a mom of a child with special needs:

"I want to comment about Jenny McCarthy on Oprah. In my opinion, she focused too much on curing the child. She did qualify her statements by saying that the treatments may not work for everyone. But I still thought the focus could have been more on how she adjusted to the diagnosis and maybe given more emphasis to good educational programs and giving attention to the many foundations set up to help children with special needs. I wish Oprah would have a show with mothers of all types of special needs. This way everyone will have someone that he or she can relate to."-- Lisa G, M.S.,CCC-SLP

Well said, Lisa.

We should also remember that Jenny McCarthy's son is still very young, and while I am thrilled for both of them at his apparent progress (as well as for the hope she's providing millions of other families), I can't help but wonder what future challenges this child and mom may still face, especially during the challenging school years.

Is he really as saved from this diagnosis as she now believes? And if not, then what?

I also find it interesting that high functioning Asperger's syndrome has not even been addressed in any of the author's lengthy interviews (partly because the interviewers are probably not fulled versed on their subject matter either). My belief is that the interviews Jenny has given have been far too limiting given the complexity of the topic.

Still, one can clearly hear the loud sigh of relief from millions of frightened parents hoping beyond hope that Ms. McCarthy is the new autism Messiah who's right on with her story of courage and hope and yes, recovery.

Are these families being well served? Or is it far too early, and misleading, to call Jenny's son 'cured,' even recovered, and is it important that we do so? Or are we again in danger of perpetuating stereotypes that there is something wrong with these children and because they have a disability they need fixing? Could we better spend valuable media time and discussion talking about how to best address having a child who struggles in any way in all its richness and complexity?

One thing these discussions make clear, the research for a cause(s) and potential cures for autism must continue. Families are struggling and they need and deserve both answers and support.

Which brings me to my own hope that the millions of families whose attention Ms. McCarthy has now commanded will not forgo other important early intervention programs and services and limit themselves soley to what are still unproven treatments for autism. Such a decision could cost some children valuable time and developmental gains they cannot get back later. Early intervention is critical to these children, as it is for many children with a wide range of special needs. I know without a doubt that it made the difference in my own son's life.

I believe a more valuable approach to addressing autism would be a discussion that opens up the possibility of new treatment and causes, in conjunction with the use of proven programs/services.

Jenny McCarthy's emotion and deep love for her son have clearly played a key role in his developmental success, something which drives home my belief in the power of a parent's love to move developmental mountains! Kudos to her for her example.

But I also believe she must become better educated about the definition of autism itself (a definition she struggled with when asked on Larry King Live), as well as challenges facing the disability community, if she is to continue to speak effectively to the topic given the sacred platform to which she has now committed herself as a spokesperson and advocate.

Self education goes with the media blitz & advocacy territory that comes with being an effective spokesperson for any important social cause. Those of us who have been doing this work for years understand the demand well. Unfortunately, with it's focus increasingly on celebrity guests, the media often loses sight of this.

I've been writing, speaking and advocating on special needs topics for nearly twenty years. It's a complex discussion not given to easy answers or simplistic solutions, especially as it involves autism. Ms. McCarthy has helped open the door to valuable discussion. My hope now is that the media will look past her celebrity and expand this discussion to include the voices of parents who have walked this road as long-term advocates and spokespersons.

Perhaps then we will be able to share with other not only the hopeful emotion and love that this mom in particular speaks to well, but also the needed facts and resources about a wide range of disabilty. The challenges facing these families are often universal, but too rarely discussed when we focus soley on one disabilty. There is power in numbers...and disabilty numbers are huge.

Jenny has been given an amazing opportunity to inform and educate the public. She must be prepared to do justice to that role, or risk having her valuable story and experiences easily dismissed as little more than an emotional mother who is not facing the reality of her son's diagnosis (an argument most parents have heard against their hopeful declarations at one time or another!). I admit that too often I found her answers a combination of clear relief at her son's progress, a mother's mountain-moving passion, and well, Jenny McCarthy being Jenny McCarthy on camera.

I wish this loving mom and her son the very best in the future, and hope Jenny continues to bring awareness to a difficult and frustrating diagnosis. I also hope that her son continues to thrive while serving as an inspiring example of what is possible for other children. I applaud this gutsy, famous mom for what she is doing with her talent and celebrity, and for fearlessly addressing special needs- no easy feat when you live in La La Land, where human perfection too often determines human value.

(One footnote: I am impressed with Holly Robinson Peete and look forward to hearing more from her).
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations

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