One of the most aggravating arguments one sees in the never ending online discussions of whether autism is a “vaccine epidemic” (it isn’t) is the “where are all the old people with autism?” This invariably comes from faux autism advocates (think Age of Autism and their sponsors) who have done nothing to support an actual answer to the question. Have they backed an effort to study autistic adults, their needs, what has worked, what has failed? No.
Well, thankfully the autism community and the autism research community do consider the question of autism and adults to be important. No where near enough research goes into this field, but some does.
A study recently came out that explores, well, the title says it all: Premature mortality in autism spectrum disorder
Now, a major Swedish study provides a wider perspective on premature mortality among people with autism. Neuropsychologist Tatja Hirvikoski and colleagues at the Karolinska Institute compared mortality rates of people with autism with the general population over two decades. Speaking from Stockholm, Dr Hirvikoski says that she was “shocked and horrified” at the results. Her team found that the mean age of death of somebody with autism was 54 – compared with 70 for the general population. For people with autism and a learning disability, life expectancy was a mere 40 years.
Read that again–the life expectancy for autistics like my son is 40 years.
One might claim that I am using this paper to criticize those who promote the “autism is a vaccine epidemic idea”. First off, they deserve criticism. They have wasted 2 decades of advocacy efforts chasing a failed idea. Perhaps some small fraction will read Dr. Fitzpatrick’s article and heed the wake up call–we need to put our efforts into advocating for a better life for adult autistics. By “we” I mean autism parents. Thank god we have autistic adults who are fighting this fight now. Rather than dismiss them with the standard, “you are not like my kid” arguments we autism parents throw around, it’s time to ally with people who are working to make a difference.
I can already write the responses to this study that will come from faux autism advocates and the vaccine antagonistic: “Look at the high mortality rate for autistic adults. That’s the damage that vaccines cause!”
If you are even thinking that, you are part of the problem, not the solution.
And if you are thinking, “this is only a problem for autistics with intellectual disability”, here’s a line from Dr. Fitzpatrick’s article to consider:
For people with autism who do not have a learning disability, the key factor is suicide, for which the rate is nine times greater.
As John Elder Robison (autistic adult) has discussed, suicide is a risk for those without intellectual disability.
What sort of supports–housing, employment, day programs, medical–do adult autistics need? What contributes to early death vs. living a long life? These questions are real. These questions deserve our advocacy. And the entire story of “autism is a vaccine epidemic” is built around denying that there is a large group of undiagnosed adult autistics. It is built around diverting advocacy away from pushing for a better life for people with disabilities and into opposing vaccines.
We just spent a couple years here in California trying to restore funding to the disability services system. You would never know that if you were reading the sites focused on vaccines, like the Age of Autism blog, or Robert “Dr. Bob” Sears’ Facebook page. You would see a big effort wasted on lobbying against a California vaccine bill (complete with Dr. Bob claiming he represents my kid along with all autistic students in California–where the hell were you Bob when we actually needed you?).
The message is simple and clear–autistic adults die much sooner than the general population. If nothing changes, my kid will likely never reach my age. There is a very loud advocacy effort focused on vaccines. OK, even if you don’t agree with me that you are wasting your time, you need to be putting real effort into areas that will make change in how we support autistic adults.
For those–think Anne Dachel of the Age of Autism for one–who keep on saying “where are the older adults with autism”. Keep saying that. And watch nothing change. And blame someone else for it. For those who actually want a better life, no time like the present to start affecting change.
By Matt Carey