17 Nov 2014

"Autism-Sucks" Parents Dominating Jerry Seinfeld Autism Analysis

Before reading this post read  Paula C. Durbin-Westby's recent blog post on media framing of autism stories and the real harm this is causing to autistic people. 

Jerry Seinfeld by David Shankbone via Wikipedia 

And once again, the parent of an autistic person is given space in a newspaper or magazine to spout off about how awful their lives are, what "real" autism is like and crucially, how dare Jerry Seinfeld claim he has anything in common with their lost and damaged offspring.

First out of the blocks on November 10 it was teacher of creative writing, Marie Myung-Ok Lee in Salon telling us all that "Jerry Seinfeld’s not helping: Celebrity autism claims distract from reality and research." Two days later we had Peter Holley writing for The Washington Post: "For some parents of autistic children, Jerry Seinfeld’s self-diagnosis was ‘a slap in the face." Holley hilariously depicts the awful, anti-vaccine organisation Age of Autism as an autism news site! He quotes infamous extremist Kim Stagliano and Theresa Cianciolo, another mum of an autistic child who are both vexed with Seinfeld.

You may think that two articles on this matter would be enough. You'd be wrong. This morning I encountered a third which follows exactly the same formula. This time it's Roger Alpher in Haaretz: "My son has autism, Jerry Seinfeld does not." All these articles follow aspects of the Autism ArticleTM template.

In all three articles Seinfeld is accused of diminishing their version of the reality of autism:

From Salon:

"To veer to the other end of the spectrum, the sporadic — but steady — news of overwhelmed parents killing their own children warns of a crisis building in our own homes. Many of these cases have been mothers, but before we explain it away, as it has been, with gendered suggestions of mental illness, attention seeking, etc., let’s also remember this story about a father — and high-ranking former Bush official — who shot his autistic 12-year-old son in a murder-suicide inside their suburban McLean home."

"Our own family’s out-of-pocket expenses of raising a child with autism average $20,000 to $30,000 a year — as it has, very consistently in the last 10 years — including schooling, legal fees, therapies, childcare, which puts us exactly in the CDC’s estimate of $21,000. If the high rate of autism isn’t disturbing to you, consider that the cost to care for and house a severely autistic adult for life easily exceeds a million dollars, not to mention forgoing the tax revenue, etc., if the person could participate fully in society. Taken in aggregate, the CDC tells us, “the societal costs of caring for children with ASD were over $9 billion in 2011. And I haven’t even begun to address the emotional costs, of having a child who can’t speak, connect, one that might be a danger to himself and others."

"these public faces of autism will allow society, and more important, policymakers, mentally off the hook. You can have autism and get a Ph.D.! It helps you write jokes! Your charming quirks and aggravating behaviors are now explainable.
"It’s only a matter of time before another child is killed, and we won’t even remember their names. We need to call autism what it is: a public health emergency, no less deadly and devastating than Ebola."
Phew! So to summarise, real autism makes parents kills their children, it's an emotional and financial burden, and it's worse than Ebola. Now that's a hell of an attitude. Ebola has killed over 5000 people in West Africa so far and the WHO estimates that over 20000 cases are likely by the end of this month. But hey, that's away over there in Africa so it hardly matters. Also murder apologism is not something that Salon should give space to.

And on to the Washington Post and their view of real autism, as opposed to the quirky fun and fashionable autism Seinfeld has diagnosed himself with:

“My kids’ lives are irrevocably altered by autism and not in a good way,” 

“Autism is a neurological condition that requires a clinical diagnosis based on serious behaviors and issues and challenges. It’s a medical diagnosis, not a personality or a gift.”

“Jerry, if you think you have autism, come over to my house for a night, and we’ll show you what it’s all about.”

“When your child gets an autism diagnosis, it’s devastating. Your life is now over. Your life is your child’s life, and you are forever bound by that diagnosis.”

“It is generally a slap in the face to thousands of parents who have to deal with a child who is non-verbal or severely impacted by autism to compare those children to Bill Gates or any other famous individuals, even of those individuals display some of the minor characteristics of a major condition,”

While Holley ought to have sought out an alternative parental view to those of Stagliano and her ilk, he did interview 2 autistic adults who provided a bit of balance to the piece though the views of the "autism sucks" subsection of parents were given prominence.
One thing that is especially troubling is the assertion that the diagnosis means your life and that of your child is over- that's an appalling claim especially after the recent high number of murders by parents of autistic children. And that's something that ought to have been challenged by the journalist.

Finally, let's look at what they say in Haaretz:

"When Seinfeld is interviewed, he maintains eye contact, distinguishes the important from the trivial, ignores distractions, and speaks to the point. He doesn't lick his hand or interrupt the interviewer with a question that reflects a level of understanding like that of a 5-year-old.What can one say? On the spectrum, a great life."

"But Seinfeld’s nonchalant self-diagnosis is a joke of sorts at the expense of my son, Yotam. While Seinfeld preened with a little autism on television, I sat with Yotam in our living room, together with a social worker. Yotam is 19, but incapable of being responsible for himself. "

"For parents, the diagnosis of their child as autistic is a terrible blow. For him and them, lifelong. Parents of autistic children suffer from high levels of tension and anxiety. And that’s in the best cases, where the children are high-functioning."

My son is autistic. That a famous man has stated that he thinks he shares some characteristics with people diagnosed with autism affects us not a jot. Autism comes in different flavours in different people. While it is often difficult to adapt to the idea of parenting a disabled child, the diagnosis of autism does not have to be devastating or a terrible blow. It can be the first step to knowing how best to support your child. I also reject functioning terminology as it can ignore talents and skills as well as diminishing difficulties and needs. These parents do not speak for me or my son.

Dear mainstream media, we've heard enough now about how it's unfair for Seinfeld to be in anyway linked to autism. Can you now start to change the dialogue, open it up to more autistic people, let them tell you what they need to thrive and listen when they point out harmful practices and narratives. These 3 stories you've published help no one and add nothing. You have power and in my opinion, a responsibility to help people like my son. Stop diminishing him.