Celebrities and Autism

Jenny McCarthy was all over social media this weekend, because somebody reprinted an old interview, and everyone had something to say about it.  I haven’t touched this issue on this blog, and I call it an “issue” because just the mention of Jenny McCarthy divides people in the autism community into very disparate camps.  I’ve said before that I think this kind of division can not only hurt our kids, but also any progress we are making in enlightening society, and changing the world for our kiddos.

And truthfully, celebrities can say whatever they choose, not because it’s a first amendment right (because that is not what the first amendment is actually about), but because media and all of society expect them to have something to say on everything, and even if they don’t seek it out (although I’m pretty sure Ms. McCarthy did), sometimes they are pushed to voice their opinions.

Of course, when you do voice your opinions, one must understand that others may disagree with you.  And because you are a celebrity, and therefore so removed from real life, they may do so in a less than charming fashion.  Even founders of large nonprofits are not immune…  ahem

I’m going to tell you right now that I have not read Jenny’s books (does she have more than one?), nor have I read any entire interviews.  I know that she claims to have had her words misconstrued, and misreported.  I have heard that she claimed her son had been “cured” of autism, and that now he may have not had autism at all.  I have heard that her book contained some outlandish theories about children with autism, something having to do with crystals… (??)…  As I said, I haven’t read it.  But I’m beginning to think I should.

I will tell you that I believe in science.  I believe in the many, many, many scientific studies that have repeatedly found no link between autism and vaccines, regardless of the schedule.  I believe that anyone urging parents to forgo vaccines for their children is dangerous to society*, and I believe the CDC, the WHO, and the NIH.

(*Vaccines protect those who cannot be vaccinated, but only if all who can, do: from the CDC website, “Immunizing individual children also helps to protect the health of our community, especially those people who cannot be immunized. These include children who are too young to be vaccinated (for example, children less than a year old cannot receive the measles vaccine but can be infected by the measles virus), those who cannot be vaccinated for medical reasons (for example, children with leukemia), and those who cannot make an adequate response to vaccination.”)

Autism has no cure.  It is a neurological disorder, not a disease, and not an epidemic.  It is not something from which you “recover”.

Autism is my son, and my son is autism.  I cannot separate them, nor would I want to.  Many adults with autism feel this same way, and they are much more entitled to be experts in our community than anyone else.

I believe we need to be more careful to whom we give credence. 

I believe we shouldn’t allow anyone to divide us as a community. 

I believe we need to understand and support good science rather than anecdotal evidence. 

I believe that we should be suspicious of anyone making money off of autism.

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Hey Autism Community: Enough Already!

I am always saddened by the divisive nature of the autism community.  It seems that we parents need to pick sides on plenty of issues, or be ridiculed, or even better “educated” by those who hold differing viewpoints.   For or against vaccines?    Autism Speaks?  Medication?  Jenny McCarthy?  Chelation?  We are even supposed to pick sides on whether the “Trip to Holland” allegory is touching or insulting.

Autism Awareness

Autism Awareness (Photo credit: Wikipedia)

When The Boy was first diagnosed (at age 5), I was handed a brochure, and told to contact the Autism Society of America.  And that was it.  I obviously needed more support than that, and looked to the Internet to join a group in which I could participate to the extent that I wanted to on any given day.  I joined a yahoo group of autism parents, and thought, “This will surely help.”  I couldn’t have been more wrong.  I was confused by all of the differing opinions on things I had never even heard about, and saw actual arguments unfold, in this group of adults whose supposed sole reason for existing was support.  I did not remain a member long.

I think we do our children a great disservice by not recognizing that just like autism is a spectrum disorder, the treatments, causes, documentation, and people attempting to assist us are all a part of a larger spectrum, as well.  There is no one treatment, no one cause, and no one group that can satisfy all of our needs.  If you think that, you are shutting the door to so many other possibilities for your child.

We must trust ourselves to do what is right by our children, as no one knows them as well as we do.  But we must not abuse each other in the process, as no one knows what we go through each day better than another parent of a child with autism.  We must agree to disagree so that we can move forward, creating better treatments, finding causes, and building better organizations for our community.  The divisive nature we have shown thus far is quite possibly holding our cause back, and it will continue to do so, unless we make a change now in how we treat each other.