Where Are All the Autistic Adults?
May 9, 2008 by Kristina Chew, PhD
Filed under Health
The British government has announced that it is planning to calculate the number of autistic adults in England. The £500,000 project is the first to specifically study the number of adults who have autism, the BBC reports.
It will be interesting to see how the study is conducted: The tools for diagnosing autism in adults are neither as valid nor as reliable as those used for children. And:
The group has been hard to measure partly because so many people have grown up before improvements in recognition and diagnosis; and some may have been labelled inappropriately as having mental health problems or learning difficulties or not acknowledged at all.
Academics at the University of Leicester will lead the research which will include a study of a sample of the adult population – a sort of mini census.
Their challenge will be to find some way of taking account of those adults who have not been diagnosed to achieve as much accuracy as possible.
Once the work is complete, the government will use the statistics to craft the first national strategy for adults with autism to be published next year.
Already dwarfing the basic question of “how many autistic adults are there” is another concern: Is the prevalence rate of autism in adults the same as it is in children (1 in 150)?
If it is not the same—as David Kirby argues over at Age of Autism by citing a 2004 study in Scotland which found only 645 adults with autism, or, that is, adults who were actually diagnosed with autism—-this would mean that there are many, many more autistic individuals today than in the past; such a finding is taken as proof of a so-called “autism epidemic.”
If the prevalence rate is the same, this would suggest that not only has autism always existed, but that the reason the autism rate has risen so dramatically is recent years is because we have a much improved and much more precise understanding of what autism is and of how to identify it in children. And—while the occasional person still says “I’m sorry” to me when I mention that Charlie is autistic—the stigma of having an autistic child has lessened significantly, and people are much more willing to talk about autism publicly.
Kirby affects puzzlement at why more autistic adults don’t come forward and be counted:
“With all of the media attention on autism these days, one would think that adults with the disorder would come forward in search of social services, adult education, job training programs, support groups, and other ways that would make their numbers be counted.”
Kirby might think this, but if he had studied what the options for job training, education, and social services are for autistic adults with the same intense focus that he applies when discussing environmental causes of autism, he would note that, in most cases, options for all of the above are not suitable, not even good and not even available (as in, they don’t exist). He would note the many reports of parents whose adult autistic children sit at home with no job and nowhere to go after turning 21. He would note that the media attention on autism today is primarily focused on autistic children, and especially those who are young and cute.
There is, of course, nothing wrong with being young and cute (my own son was indeed so as a toddler and preschooler, once upon a time—-ok, he’s still a quite good looker, I think). But it’s a different matter to get experienced and motivated teachers and aides for an adolescent with the beginnings of a mustache and a muscular build (no more carrying); what about for a potentially 6 foot tall minimally verbal adult? And, much of what the media has to say about autism is not exactly upbeat: Autism is lifelong, makes life difficult and parent “victims“; autism is like a thief in the night that took away a beautiful child and left…..autism.
So, maybe the question is ask is not only where might be all those adults with autism but where are the services and supports for them?
I expect a continuing dialogue ending in a proper research design.
My concern is of course that they do not have the resources to employ the census takers they will need for a realistic attempt, and rely on questionnaire return. One really needs a significant number of people to reply to be valid on a street to street basis otherwise it becomes all too prone the self selecting bias, (or self opting out as the case may be)
The worst case would be to trawl existing records and base questionnaires on that.
I wonder whether there was competitive bidding for this project, of whether it was just plonked on the team chosen in the expectation that they will be able to come up with a method, they know not of yet.
Well I intend to find out one way or the other. If not from professor Brugha, then from others involved elsewhere to whom I have easier and more reliable access.
I realize this is quite an old post, and that a lot of discussion has gone on between now and then (haven’t even read it yet), but the very first reply struck me as so true: “The second big reason is why in the world would an autistic who has progressed to the point of “making it” in a NT world want to slap a label on themself? So they can be further ostracized and marginalized in society, and their bosses can have an excuse for getting rid of them?”
The more I learn, the more I strongly suspect I have Asperger’s. Reading previous comments I have made would show an evolution of thought on this, from acknowledging that I have some traits to, now, acknowledging that by “some” I mean “all but being impaired by my traits”. I could fall within the BAP, I suppose, instead. Either way, I’m not impaired by my differences. I’ve learned to make them work, and found people who love me for who I am, who don’t look at me weird if I have a hand twitching stim in public that draws looks and are understanding if I get upset because I don’t understand tones well and misinterpret statements. I’m smart, and I do a number of things well. Why in the world would I want to get a label now, when I’m finally an adult and finally really functioning in the world? I fear that it would give excuses to employers not to hire me (hard enough being a young adult and assumed to be a lazy good for nothing because of it), for people to discriminate. The mental picture so many people have of autism is so negative, I’m reluctant to associate myself with it. I do realize that this is contradictory to helping people see that autism isn’t just one thing, but it’s hard to take that leap.
My girlfriend has an overt disability (cerebral palsy) and has a hard enough time getting people to treat her as an intelligent adult. It’s selfish, yes, but I don’t want to stand up and be evaluated and counted if it means I will be marked as ‘disabled’ too. I’m able. I just do things differently.
Norah; You said that your country never put fluoride in the water supply. and witch country is that.
I wounder how long it is going for the uk to do the study and how payed for it I hope that is not a pharma co. Be if is you can be shur that it will come out in favor of the what the co wents it to say. Money has that afect.
Money does, but just making presumptions about “pharma companies” and supposed influences doesn’t really address issues such as determining diagnostic criteria and, too, finding autistic adults.
How many legs are there for your sites. I have found about 4 so far.I try to read all of them and all i see is that most of them seem to like that they have autism and not how they got it. No body seems to went to get involved on the caused the them to get it.
Kristina,
Didn’t know *quite* where to put this, but I thought it was interesting, even if it falls more into the anecdotal than data.
I’ve been doing some genealogy searches, with some associated news archive searching and did some browsing under search terms childhood schizophrenia and autism. Wasn’t quite sure what I would find.
Simpson’s Leader-Times, PA April 29, 1963
“More than 500,000 children in the United States are mentally ill and most of them suffer from childhood schizophrenia, which is psychosis, not to be confused with mental retardation.”
Simpson’s Leader-Times, PA
January 15, 1967
Autistic Child Stays Completely to Himself
“…It is estimated that there are 500,000 such children in the US”.
FWIW–this quoted number is not from an isolated story, although these two were from the Simpson-Leader. There were many, starting from about 1963 under the header of “childhood schizophrenia” and “autism”. The use of the term childhood schizophrenia started to die out in the early 70’s and was overtaken by the use of the term autism in the ’80’s.
Simpson’s Leader-Times, PA, Sept 25, 1972
“…Dr. (Lorna) Wing says that although some experts have called autism a “childhood schizophrenia,” the disease differs from adult schizophrenia in that the child does not have delusions and hallucinations…”
The Capital (Annapolis, MD) July 13, 1973
Story about 3 children aged 9, 15, 14
Which would translate to birthdates of
1958, 1959, 1964
Which speaks both to adults and to vaccination schedule influences, since that was the way-back-when of few shots spaced widely and later often alluded to in current campaigns.
“…were “perfect babies,” according to their mothers. They cried very little, developed fairly normally, walking and talking at about the right age…Yet, each child, as he neared the age of two began to withdraw. Each child regressed in his language development and began to dislike being hugged. They each shied away from physical contact with their parents…”
Then, as now, there is lots of discussions of etiology, treatment modalities, some stories citing hopelessness, some discussing differential and unexpected outcomes. Like I said, purely anecdotal, but kind of interesting.