One of the recurring themes heard in online discussions of autism is “where are the autistic adults?” The low number of identified adults is used as evidence of an epidemic and used to promote the vaccine-causation hypothesis.
A number of studies have started looking at adult populations and they always find a greater number of autistic adults than previously identified. Probably the largest study and the most discussed is one performed by the NHS in the UK which found a prevalence of about 1% in adults.
The NHS study looked at adults in the general population, outside of any institutional type setting.
One complaint that is often raised is where are the more severely challenged adults? The “obvious” autistics? How could they have been missed. Studies by Prof. Peter Bearman at Columbia and Prof. David Mandell have shown that, yes, we have miss counted autism in more challenged groups in the past.
Now a recent study from Iceland looks at autism in adults in Reykjavik with intellectual disabilities. They found that there were twice as many autistic adults than previously thought.
Prevalence of autism in an urban population of adults with severe intellectual disabilities – a preliminary study.
Saemundsen E, Juliusson H, Hjaltested S, Gunnarsdottir T, Halldorsdottir T, Hreidarsson S, Magnusson P.
State Diagnostic and Counselling Centre, Division of Autism, Kopavogur, Iceland.
AbstractBackground Research on the prevalence of autism in Iceland has indicated that one possible explanation of fewer autism cases in older age groups was due to an underestimation of autism in individuals with intellectual disabilities (IDs). The present study systematically searched for autism cases in the adult population of individuals with severe ID living in the city of Reykjavik, Iceland. Methods Potential participants (n = 256) were recruited through the Regional Office for the Affairs of the Handicapped in Reykjavik. First, a screening tool for autism was applied, followed by the Childhood Autism Rating Scale and finally the Autism Diagnostic Interview-Revised (ADI-R). Results The point prevalence of severe ID was 3.7/1000 (95% CI 3.2-4.1) with a male-female ratio of 1.2:1. Participation rate in the study was 46.5%. Participants were younger than non-participants and more often residents of group homes. The prevalence of autism was 21% (25/119) (95% CI 14.7-29.2) with a male-female ratio of 1.8:1. Of the individuals with autism, 10/25 (40%) were verbal according to the ADI-R definition, and 18/25 (72%) had active epilepsy and/or other neurological conditions and handicaps. Conclusion The study identified twice the number of autism cases than those previously recognised within the service system. Autism is a prevalent additional handicap in individuals with severe ID, which should always be considered in this population. There are indications that the estimated prevalence of autism found should be considered minimal.
Does this show that there has been no “epidemic”? No. But it does show (again) that the idea that autistics are so obvious that they couldn’t be missed is, well, a myth.
Left Brain Right Brain 
I know far too many high school students—17, 18, 19 year olds—with autism whose symptoms aren’t going away and are easily recognizable. When they’re 30 and 40, I’m quite sure they’ll be just like they are now. Claiming that cutting edge science is now coming out Iceland is hardly evidence that autism has always been around. I know lots of autistic kids in my little town in WI. If autistic adults are just as prevalent, we wouldn’t have to go to Iceland to find them.
Why are there stories in the news from around the U.S. on the need for services for adults with autism? What did we do with these people in the past? We would have had to provide for their needs even if they were incorrectly labeled as mentally retarded. Why don’t they just go where autistic adults have always gone?
Why hasn’t the CDC, with billions in their budget, found the missing autistic adults here in the U.S.? If they were really there, I’m sure officials would be showing them to us.
Hang on, in a few years we’ll have hundreds of thousands of them. They’ll be overwhelming social services. The problem will be that they’ll be people in their 20s and 30s. Nice try, but there’s nothing here to dispel the fear that autism is going to bankrupt us.
Anne Dachel
Media editor: Age of Autism
http://www.ageofautism.com/
Ms. Dachel, the plural of anecdote is not data. If you want to find out the information of the hidden horde in the USA, then divert the funds spent on the funky primate studies to do just that.
Until then, your baseless opinions are diverting funds that could be better spent providing services to my adult son.
Ms Dachel,
Can you point to the CDC studies which have been looking for autistic adults? The main focus for their epidemiological team on autism, as you well know, is on 8 year olds.
Now for the hard question, the one you avoid every time it is brought up. Can you point to the efforts in identifying autistic adults which have been undertaken by the groups represented by the Age of Autism? Please, I’d love to see the links to, say, SafeMinds’ or Generation Rescue’s advocacy efforts in this area.
Are the needs of autistics different from those of other disabled adults? I would say yes. Is it possible that there are large numbers of autistic adults who are yet undiagnosed? If you don’t think so, I’d love to see the data you rely upon which is conclusive.
The fact of the matter is that your organizations are interested almost exclusively in the idea of vaccine causation. Anything which lessens the “epidemic” is vigorously denied by your organizations.
In short, your organizations are willing to sacrifice advocating for undiagnosed adults in order to promote your own agenda.
Now, if you could identify where in the above piece I say that there aren’t adults and young adults who are more “obvious”, I will gladly address the rest of your comment. I didn’t, so I won’t.
Ms. Dachel,
as long as you have been kind enough to comment here (a fact I do sincerely appreciate), I would love to hear the Age of Autism’s response to the fact that the latest Hewitson/Wakefield study makes some amazingly odd claims–such as it is normal for infant monkeys to see their brains shrink and, therefor, it is somehow abnormal for infant monkeys to have their brains grow with time.
“Why don’t they just go where autistic adults have always gone?”
Like: Mental institutions? Prison? Homeless shelters? The morgue?
Your argument amounts to that of claiming absence based on ignorance. Except, you don’t even have that excuse. Autistic adults have been coming out of the woodwork for years. The response from AoA and allied groups has been either to pretend we don’t exist, or denigrate us as “self-diagnosed”, “only aspie”, etc. Also note, members of AoA have a spectacular record of missing things that should have been found easily, from autistics among the Amish to the right Rotateq patent policy to the well-documented activities of a supposedly “vanished” doctor.
Finally, note that LBRB was willing to allow your comment to appear. Don’t presume to speak to anyone here as if you had the high ground, as long as AoA refuses to grant the same courtesy.
“Nice try, but there’s nothing here to dispel the fear that autism is going to bankrupt us.”
Glad we got to the core of the issue.
Research and epidemiological analyses are done in places like Iceland because the population is well known, tracked, and somewhat static. Iceland and other nations also have national databases, due to their healthcare systems. Such data mining practices are not only technically impossible in the U.S. (because there is no such single database), but might be legally impossible due to our IRB requirements.
As one originally diagnosed “brain trauma” and “likely retardation” — I was “discovered” in my late 30s as “autistic.” I’ve met dozens of people diagnosed after the age of 35 and have done statistical analyses on these populations. For example, even today women are more likely to be diagnosed at later ages than men. That doesn’t mean women “develop” autism — it means our screening is irregular and flawed.
Sadly, people with autism, especially Kanner’s / classic symptomologies, do end up with other medical issues. Even those diagnosed now as HFA or with Asperger’s Syndrome have issues with recognizing health and welfare issues. It would not surprise me to see a statistically significant shorter lifespan among these populations. If so, there would be “fewer” adults over 45 or 50 with autism due to the challenges faced throughout their lives. The reality is, people with executive deficiencies might not understand, appreciate, or recognize the services they need to maintain a long and healthy life.
Most “older” autistics I meet have issues from dental health to vision issues for which they need treatment. Studies have shows poor dental health actually corresponds to lifespan. It’s a good indicator of other issues being neglected.
Also, I would not have an autism / HFA diagnosis without being forced to have a new evaluation three or four years ago. I saw no reason for another label in life. It doesn’t improve my life in any material way, but does add to the data points. It does mean I was extremely cautious when defining autism within my research projects.
– C. S.
I am 70.
Eight years ago I it finally dawned on me that I am on the spectrum.
The term Autistic is a big melting-pot of different characteristics.
Autism is not necessarily always retarded. It is being different: not always less.
It is having-a-hard-time fitting-in with the socializing-dance. An over-sensitivity in some areas, and a missing-the-connection in other areas.
Vaccines and environmental-pollution can play havoc in oversensitive bodies. In my case and the case of my older-generation family-members, I don’t recognize much influence of such.
One reason why we detect more autism nowadays is the change into a freer, less disciplined society. In old times the “weirdo”-kids were much more forced to fit-in the streamline.
Those who could not adjust to that, died young from deceases or confrontations with their surroundings. Or faded-away in their isolation.
Those who survived lived their lives like a Data (from Star-trek) or village eccentric or idiot, depending on their intellectual level.
Since my own diagnose I have been recognizing a lot of adults around me who unaware or aware fit in the autistic spectrum.
Ms. Dachel, perhaps you remember this discussion, Evidence against an “autism epidemic”?
Have you all figured out yet that the John Merck Fund has nothing to do with a pharmaceutical company? Isn’t that kind of like thinking the Hoover dam has something to do with the vacuum cleaner company?
By the way, do you know anything about the Willowbrook School? Do you know why many of the children ended up there? How about the many other schools for the deaf, blind and “mentally deficit” that are now empty and/or closed? Here is a hint, and there are many other similar stories.
Here is another hint:
Impact of specific medical interventions on reducing the prevalence of mental retardation.
Brosco JP, Mattingly M, Sanders LM.
Arch Pediatr Adolesc Med. 2006;160:302-309.
It appears that most of the posts made here are from either parents with credibility or by those with Autism. The high functioning nature of many that have Aspergers in whatever form they do make them hard to pick out, that is until they attack Age of Autism. AoA tells it like it is, which irritates the small mass of those capable enough to fight the large masses of those wanting treatment for their children. The parents responding here are of adults and are fed up with waiting lists. No real issues have been covered in this article other then ignorance of the true meaning of ‘Spectrum’.
Kelly
How does it just dawn on somebody they are on the spectrum??? How do others that are older decide they are on the spectrum??? Schools won’t even take real diagnostics so none of the self made Adult Asperger’s have any real claim to anything but a way to put down what helped my child to not be on the list of who you’re searching for. If children are given the right treatments before it’s too late then they will not be an adult autistic. Maybe it’s a case here where many of those you are looking for have found a way to cope with their disability or have been helped out by people like those in Generation Rescue and those that read the truths in Age of Autism.
Kelly
Perhaps you are from an alternate universe, where Amish and Mennonites are interchangable, a one-third share of $18M can equal 45M, a doctor can be “missing” for a year while holding three jobs and publishing twenty papers, and shrinkage of a part of the brain is evidence of normal development rather than a serious pathology. If so, then yes, AoA tells the “truth”.
Kelly:
If AoA tells it “like it is”, how can you explain the most recent primate study where they are claiming amygdala shrinking is normal? If they were telling “like it is” they would not have such draconian moderation policies, and be willing to discuss the merits of the topics.
The problem with you mentioning treatment is that you failed to specify if it is appropriate treatment. AoA is pushing putting questionable chemicals use on children (OSR, Lupron, other chelation drugs and on and on).
I am all for treatment, as long as it is appropriate. That includes medication for seizures, OT/PT, speech and language therapy and educational supports. I’d be more happy if there were supports for more vocational training for kids like my 21 year old son.
You see, he has fallen through the cracks. He does not qualify as disabled because he is too functioning, but he at least does for disability services at the community college. His time with the Department of Vocational Rehabilitation was frustrating because they could not spend the time he needed due to budget constraints.
Bits of the budget pie that the “vaccines cause autism” crowd are eating away for their own reasons. Thanks a bunch. Not.
Chris,
Let’s be fair- even AoA has turned critical of the Lupron protocol.
@Anne: See, if these adults still didn’t have an autism label, you wouldn’t see stories about the needs of autistic adults, now would you?
Why hasn’t the CDC allocated funds for an adult prevalence study like the NHS has in the UK? That’s a good question. I’m guessing they were too busy appeasing anti-vaxers.
Surely, it should be possible to detect a trend in social services now, shouldn’t it? That is, when you look at developmentally disabled adults as a whole, there should be an upward trend in, say, the number of developmentally disabled adults who are cared for by the state or society (i.e. those who do not live independently or at home.)
I’ve looked at data, and I’ve never seen any trend like this. I have seen alarmist claims by journalists, with no backing whatsoever.
Why is that so hard to imagine? If you have no clue what “autism” or “spectrum” are, why (and how) would you just know you’re on the spectrum?
There’s some literature that might help. Take, for example, Nylander & Gilberg (2001). This is a study of adults who sought psychiatric treatment. Yet, 90% of the “definite autistics” identified did not have an autism diagnosis.
Of course, the first adult study of the type described in the post was Shah, Holmes & Wing (1982). They found that “the administrative category of mental retardation includes a substantial minority of people with severe impairment of two-way social interaction” and that “such social impairment occurred in 38% of the adult population [in a long-stay hospital] and was very significantly associated with abnormalities of communication and imaginative activities.”
that is the point Anne. NOTHING was done with them! They didn’t recieve help! Alot were missed diagnosed as insane and locked away from society durring that time. Or put into institutions. Families didn’t talk back then about thier kids if they had things that they considered wrong with them! They swept it all under the rug hoping that if they didn’t look at it it would dissapear.
This is what my grand parents, of the WW2 generation, have told me. It wasn’t that they were not there. The reason why they were never talked about or why you never saw them in public was because they got locked away, neglected, ignored, one or all three!! Not to mention the misdiagnoses of mental illness that often happened!
There wasn’t a clamour for services durring that time because they believed there was only one type of service, teh institution!
And I thank God Almighty we have gotten our heads out of the dark and don’t do such horrible things anymore. I am glad that parents are clamouring for services and helping thier children reach for heights that people from older generations thought they would never reach.
As much and as far as we have to go in this fight for civil rights, I am glad that we have come as far as we have.
That is why you didn’t see or hear about those with autism back then Anne. It was all swept under the rug.
Kelly, please don’t insult those like me. I never decided one day I was on the Spectrum. I was diagnosed but a REAl nueroligist, one who specializes in those on the Spectrum by the way. Until that time, I had a misdiagnoses of Attention Defacit Disorder. Not ADHD. Just ADD. And came to find out that diagnoses was incorrect.
I run, litterally run, kicking and screaming, from the color pastel yellow. I can’t eat liquid choclate of any kind without getting sick because of the texture not working with the taste. I have complete meltdowns over high metallic sounds. I am able to be social due to years of mind numbing hard work. By mimickry and finding out a few tricks have I gotten myself to where I am, with help, and services I desperately needed.
I don’t appreciate getting condescended down to because you don’t get it. Just because I have AS instead of Kanner’s does not mean I don’t need help like everyone else!! I don’t take away from your son. Now STOP IT and try acting like the adult and parent you say you are!
Ms. Dachel and Friends,
Please know that the ICAA respects our differences and perspectives. In fact, a truly diverse culture will embrace and encourage all sorts of ideas and thoughts. However, we must not deny that there have been adults on the Autism Spectrum for as long as there have been adults with any other disability in the history of human beings. Denying the existence of people who are already struggling and on the edges of our society; often times homeless, neglected and forgotten, adds insult to injury.
As a mother, this is not the future I will accept for my own child. As an advocate and leader of the ICAA, it is not the fate I will accept for anyone with disabilities simply because they are not “typical”. Denying the existence of, or complaining about, a drain on society’s resources for the support of folks on the spectrum is not helping anyone and I see no suggestions listed in the article on how to help.
We are not going to eradicate Autism, my friends. What we must do is ensure we all understand Autism, learn how to live with folks who learn,communicate, live and work differently than ourselves, and move forward. Autistic people have rights and freedoms. All of us need to be working together to ensure we progress as a global society to include all people, regardless of their difference in ability.
If you still have yet to meet, see or know an Autistic adult, feel free to connect with me. I will be happy to help you and introduce you to some great people.
Thanks,
Emily Malabey
David N. Brown:
Thanks, I must have missed that.
Have they? I know Kent Heckenlively is a big fan and have seen supporting comments this year.
AoA had a post in the last year by someone critical of Lupron. Kent Heckenlively did write some posts on lupron, and Anne Dachel defended the Geiers and lupron after the Chicago Tribune exposed Lupron therapy as unfounded.
Lorene Amet wrote on AoA that (May 2009)
As an aside–it appears that the Geier’s have been assigned the patent rights (should the patent be granted–it is still an application). The following is the legal status of the lupron/autism patent:
@Anne Dachel,& others who don’t think that Autism in Adults doesn’t exist (I have Asperger’s with one nephew who has Asperger’s & his older brother with low to med verbal “classic” Autism & both in early 20’s, I am myself in my mid 30’s),it exists, have you checked the groups homes? in the past our kind were put away in Sanitarium,& anyones you do know,have you have you & AoA ever bother to ask them? Here is my blog,with info on the Dick Clark Savant Twins,Dr.Temple Grandin,Kim Peek etc,please take a look at the info on my blog,you will see, how wrong,you, AoA,you & GR are!
http://spectrumtimes.blogspot.com/2010/07/back-to-swing-of-things.html
I have seen the highs & lows of Autism & the Spectrum,so I am just qualified to be an advocate in which in as peaceful as possible I will continue fighting for our rights against the misleading discrimination,I am sorry for anybody’s particular situation all I want to you see is that there is a bright side to life & Autism as well,if you life gives you lemons you make lemonade right? 😀
Sullivan,
I wasn’t aware of such “high” level people at AoA supporting the therapy. Still, AoA being what it is, the appearance of the the slighest criticism would be like a dam bursting anywhere else.
Even very severely affected autistics were not diagnosed in the past, or rather misdiagnosed with brain damage/mental retardation now referred to as intellectual disability. Most were considered doomed to end up in institutions. Others had to be run though the shitty special ed system that made them all feel like #$%*ups. The Aspergers may have been missed, or also misdiagnosed, also enrolled in lousy special needs classes. Many adults out here are still undiagnosed, including my dad.
It always amazes me whenever this sort of data comes out, that people scream and shout “Where are the adult autistics!?1?eleventy!”.
The answer is always “Where you’ve just been told, by the paper you’ve just implied you read and understood”.
It never occurred to me that I was on the Spectrum. It was spotted by an associate (an autism worker) of my wife after my behaviour started causing problems at work. I had managed over 1/2 a century without a diagnosis. How would anyone know they were on the Spectrum unless they knew about Autism and why would we know anything about autism if it had never intruded upon our consciousness?
Hi Dedj –
The answer is always “Where you’ve just been told, by the paper you’ve just implied you read and understood”.>
But how many autistic adults did they really find? In a city of 70,000 people, they identified fourteen individuals that fit a classification of autism that didn’t have that diagnosis to start with. Even had the entire population of 256 had participated and the ratios been the same, they might have found 30 adults with autism. I’m not convinced this is a meaningful finding considering the magnitude of increases we seem to be seeing in our children. (?)
The study concludes: The study identified twice the number of autism cases than those previously recognised within the service system.
Technically true, but our observations are much more alarming than a mere doubling of cases.
– pD
“In a city of 70,000 people, they identified fourteen individuals that fit a classification of autism that didn’t have that diagnosis to start with”
This statement is misleading. The authors made no attempt to identify autistics within the full 70,000 population. They only looked at a small subset. I could say, “they only found 30 adults with autism in a world population of many billion”.
This is not “The” missing group of adult autistics. There is no single group. We have obviously undercounted autistics (both children and adults) in the past and are probably still doing so. The question is not “if” but “how many” have been uncounted in the past and whether this number is sufficient to account for the apparent disparity in the number of adults and children autistics.
Some parents of children on the Spectrum do seem to believe that they are the only ones with a right to comment on Autism
and deny the right of adults on the Spectrum to comment their experience. Some of the posters here like Kelly Taylor seem to be positively contemptuous of people with autism, sadly this is a forum where intemperate remarks are common and provoke intemperate responses which is sad when one considers how valuable the information posted really is.
I just found an old comment of mine on the unseen Adults with Autism http://springingtiger.autisable.com/719153359/invisible-autism/
@pD: What Sullivan said. Did you miss the part where they only examined adults with “severe intellectual disability” identified through the Regional Office for the Affairs of the Handicapped in Reykjavik?
Severe ID is typically defined as an IQ of 40 or less. Of all the people with ID, only about 5% have severe ID.
“I’m not convinced this is a meaningful finding considering the magnitude of increases we seem to be seeing in our children.”
I’m not sure why.
Sullivan, and others, have pointed out that we are only dealing with a subset of the population here.
This is a subset that can be reasonably assumed to be in repeated and prolonged contact with services, where those services have experience with autism, and where the contact may range across years if not decades.
This is a subset that appears – in regards to intellectual ability and general function – to be similar to the supposedly ‘obvious autistic’ archetype promoted by epidemic procliamers.
A sizable portion of the subject base appears to be based in group homes, which typically have live in or buy-in support workers. The other remainder may live at home or in larger institutions. Regardless, this may mean that a significant proportion of the subject base have regular contact with appropriate services. My experience of wokring in a local LD/ID service indicated that knowledge of autism in not unusual, and such services may even have those with professional or clinical expertise in autism.
So to repeat:
A subset of individuals that can be reasonably deemed to have an extensive health history, with repeated contact with appropriate services, that have conditions that are believed to be comorbid with ASD’s and that were deemed disabled enough to be on a centralised register in a country reputed for its quality of services, nevertheless were found to have been non-diagnosed at a rate of nearly 50%.
I’d say that’s a fairly significant finding in terms of what it may mean for people that are less ‘obvious’, less scrutinised, in less contact with services, less likely to be in contact with ASD approriate services and less likely to be on a centralised register.
Of course, it can only account for a small portion of the observed ‘increase’, but if one declines to admit to the validity of the entire base of evidence through unfounded dismissal of the constituent parts, then one is never going to find any convincing evidence.
It isn’t always like you wake up one day,and realize you are autistic,or on the spectrum.Thirty or forty years ago,the world was a very different place.Nowadays children are diagnosed by age two,but this was not always the case.I had severe nonverbal developmental delay,but from what my mother told me,our doctor wasn’t all that concerned.
Children were not usually singled out as having problems until they started school,and then they were labeled as “slow learners”, learning disabled,and given a lot of psychiatric,and behavioural diagnoses on top of that.This was the case with both my sister and I.We are 41 and 50 respectively.You go on like this with a string of such diagnoses for years.And then one day,if you’re lucky,you see a doctor,therapist,or whatever,who thinks you might have an ASD after all,and wants you to have an evaluation to see if you’re really autistic and consolodate all these diagnoses.
In the last five years,my sister and I have both been diagnosed as autistic,independently of each other.My diagnostic evaluation was the full eleven hour one given to children, conducted by a developmental psychologist at a local teaching hospital that runs a regional autism center.Since then,I have also been found to have a chromosome 22 deletion,something I could not have been diagnosed with as a child,and I suspect is a lot more common than you’d think,even among aspies.
Click to access durand%5B1%5D.pdf
It’s not severly disabled people in institutions.It’s not people with Asperger’s who read something on the internet,and decide they’re “on the spectrum”,it’s people with ASDs all over the spectrum,who are being diagnosed now,that should have been in the past.
Genetic disorders don’t magically resolve themselves when you turn eighteen.