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.

celebrate

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A Poet in My Own Mind: “Autism”

I enjoy writing.  Always have.  I took a creative writing course in college and had a great deal of fun, especially with poetry.  Fun does not necessarily translate into good, so I apologize in advance.  I’m not the type to subject my poetry on others, but when I ran across this poem that I must have written in a desperate moment, I’m guessing about three years ago (based on the Wubbzy reference), I thought it might resonate with others going through similar desperate moments.

Autism

Short

definition:

A neurological disorder…

Long

definition:

Something not quite

right.  Speech delay

Speech therapy, Occupational

therapy (hypersensitive, hyposensitive,

Gross motor – Gross like large not like

yucky, fine motor) From flashcards

to reading two years ahead

Obsess, obsess, Obsession

for months (Pizza rolls every single

night for dinner) (Wubbzy AGAIN?)

laughing, joking, never gets

old.  Still no empathy.

Logical, linear, Spock-like, must

follow the rules, follow the law, follow the

schedule.  No deviation, no changes, no

surprises, no fire drills or we derail.

anticipate, anticipate, anticipate

lay the clothes out, take the meds, follow the

schedule.  Nothing dirty, no holes, no stains,

hide the clothes when they get too small.  Still

might come back to bite you,

kick you, pull your hair, scream, cry, lie

down in the middle of the aisle

suffer the stares, the whispers, the grandma shaking her head, “Mm, mm, mm.”

(must learn that Vulcan death grip – what happens

when he gets bigger?)

What happens next? One day

One day at a time, one day

one day

Breathe, exhale and relax.