Kim Rossi Stagliano, an autism advocate and mother of three autistic children has written a few fairly controversial books on the subject. She also takes care of a blog called "Age of Autism"; her blog -
available here, is filled with the typical autism oriented conspiracy theories, linking Autism to Mercury in vaccines, a "vaccine epidemic" as well as continued celebration of now debunked scientist Andrew Wakefield.
Kim's article, published in the Washington Post today is simple: My three daughters are autistic. I despise Autism Awareness Month.
Arguing that Autism Awareness simplifies a tragic epidemic, Stagliano makes her point about her own experiences.
The feel-good frippery of Light It Up Blue cloaks an often debilitating disorder in an air of festivity, with balloons, sparkling lights and pep rallies. The campaign implies autism is a party, rather than a crisis. For families living with autism, reality is far more sober, and their needs extend far beyond “awareness.”
While I never deny any person their own experience with those who are autistic, I think it is equally important we do not brandish all of those with autism by the same brush, as debilitating poxes on families.
Stagliano's April 1 post on her own website marked her feelings on this issue:
I am against the outright celebratory tone of April. I always consider this a month of solemn commemoration.
While Stagliano is of course free to mourn through April (and probably beyond), her base argument seems to be denying the broad spread diversity that make up the autism spectrum.
As a parent to an autistic child myself, I'm keenly aware of the significant difficulties that face different presentations of autism. Our son will be unable to live on his own and will need basic care for the rest of his life. We exist in the spectrum in a way that Kim can probably find understandable.
While I could bemoan the longterm outlook on our first son, I must also point out that I know many individuals diagnosed with levels of autism where they fit the autism diagnosis but are fully integrated into average day to day life.
This is a big part of what Autism Awareness month is supposed to be about - an understanding that the Autism Spectrum is very broad, ranging from those with severe disabilities that are life changers to those who deal with neurological differences that put them outside of the norm - but with love & care it represents just another challenge.
This level of diversity, however, has long been lost on Stagliano, who continues through Age of Autism and elsewhere to decry autism as a near plague. Her efforts in "Vaccine Freedom", touted through her twitter and blogs boils down to an assumption that autism is a killer not just for those who are diagnosed, but for the families impacted.
As I note, I am a parent of someone with a more severe diagnosis. I am not here to wage a war of words with Kim Stagliano over how rough it is to raise a child who will be looking at residential care. I can relate to many of her arguments, including the raw cost, the economic problems, the time as well as the end impact on the family.
However, I feel as though many autistic parents miss the point of what autism awareness is truly about. It isn't about making people aware of individual cases one by one, but rather a matter of saying the spectrum is HUGE and that those who are diagnosed are not always the cases like she or I deal with.
I have high expectations that near me, an individual who is on the autism spectrum will be elected to an elected position near me. This is a major breakthrough for someone who struggles to communicate in person and deals with social awkwardness. While they have been diagnosed for years, it has not been something they let stop them - and awareness of autism helps point out how broad the diagnosis is.
The Washington Post, however, decided to allow the author to offer her scary vision of the future with autism. She hits the audience with this doozy:
"It is the fastest growing developmental disorder, and MIT scientist Stephanie Seneff predicts half of children born in 2025 will be autistic. "
Here's the problem: the Washington Post just printed something which Snopes and others have actively debunked because Stephanie Seneff is NOT a researcher on autism. She is in fact an artificial intelligence researcher who has just postulated - with no peer reviewed documentation - that there can be a "cure" developed through genetic manipulation, and that trace elements, like those found in the environment and vaccines cause this genetic change of sorts. Snopes article here:
http://www.snopes.com/...
It's OK for people to not like Autism Speaks - I'm not a huge fan. But I'd encourage people to think about Autism this spring not in a doom & gloom, conspiracy minded fashion as portrayed by the author in the Washington Post, but as an incredibly diverse group of individuals who should be treated as individuals, thought of as a person first - not a disability - and who should be involved in the decisions of their care when possible.
I understand the rage and fury that Kim Stagliano feels. It's one of the phases of grief for the children she believes she deserves or should have had. I understand the expense of a child who will need longterm care who has significant issues. I understand all of it, and I won't chastise someone on how they handle their own family they love.
By that same standard, I'd ask that we stop presenting the world with the idea that autism is ALWAYS x or ALWAYS y.
Autism is diverse. This April is a chance for us to understand that and to understand that every person diagnosed with autism has a very different journey.
If only the Washington Post had realized this before they published something that reeks of fear of those who need our love.