Again, with the adult autistics

4 Jan

One of the bigger conceptual issues in the divided autism community is adult autism. To some (me included) the idea of autism being a childhood issue is misguided and just plain wrong. To others, autism _is_ a childhood condition.

Part of their misunderstanding is that adults with autism are just not given enough attention and thus, it is hard to ‘see’ their existence, except online where it is clear to those who are prepared to be realistic that there are plenty of adult autistics of various functional abilities.

My stance is this: there is no decent science that has looked to see in what number adult autistics exist as compared to child autistics. However, it is obvious there are many. The NAS statistics give these figures (with caution) for the UK:

The estimated number of children under 18 with an autism spectrum disorder (ASD) is 133,500. There could be over 500,000 adults who have an ASD. So just over 74% of people with an ASD in the UK could be adults.

However, this is not certain. What is certain is the absolutely terrible state of knowledge regarding adults with autism in just about every country you care to mention:

A survey performed by the National Autistic Society (NAS) found that Portsmouth City Council and Hampshire County Council do not know how many adults in their area have the learning disability.

The story is repeated up and down the UK.

A 2004 audit on ASD in Scotland tried to present on overall report on the ‘state of ASD knowledge’ in Scotland. Most striking to me as I read the report was the comments that each local authority/NHS partnership had regarding an answer to the following question:

“Research tells us that prevalence rates of autistic spectrum disorder represent an underestimate. To what extent do you consider the numbers above to be an accurate reflection of all those who live in your area?”

Argyll & Bute Council
It is believed that the figures represent a significant under-representation of those with ASD in Argyll and Bute. This was thought to be due to a historical under-diagnosis and the absence of clearly defined referral pathways and multi-agency assessment processes for adults.

East Renfrewshire Council, NHS A&C and Greater Glasgow NHS
…as a result of changing patterns of diagnosis over recent years there are likely to be substantial numbers of adults with ASD who are not known to services and are not diagnosed as having ASDs.

It is apparent that information collection and collation for adults is almost non existent.

There is little doubt that this number is far short of the actual number of adults in Dumfries & Galloway with ASD.

There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability.

It is believed that these figures comprise a significant underestimate due to the lack of a diagnostic process particularly for adults. It is believed that the figures for younger children are accurate due to the development of diagnostic tools for children are accurate due to the development of diagnostic tools for children and the establishment of multi-disciplinary partnerships which include education.

The estimated numbers provided for the pre-school and primary school ages are thought to be a reasonably accurate reflection of the true picture. However the estimated number of secondary school children is less accurate and the estimated number of adults with ASD is likely to be a considerable underestimate of the true prevalence.

Figures for children are an accurate representation of needs. One or two children may yet be diagnosed. Figures for adults are under estimated as diagnosis has not been made and access to specialists is variable.

Perth & Kinross Council
Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

This meant that 45% of the areas covered in Scotland clearly felt that there was a severe under diagnosis of adults in Scotland. It was also acknowledged that there were people on their books who were clearly autistic but had no diagnosis.

It seems to me that the best answer to the question of how many adult autistics are there is: no firm numbers but obviously lots.

Or, to put it another way – my child isn’t getting any younger…how about yours? Looking forward to their adulthood with a culture that doesn’t recognise them?

20 Responses to “Again, with the adult autistics”

  1. Navi January 5, 2009 at 00:05 #

    wonder how they’ll tell me he’s not an adult autistic if he still doesn’t talk… ran into a phlebotomist with a 42 yr old autistic brother. My son reminded her of her brother. He loves hugs too. She made blood draws & long wait sooo much better. There was a mom who had an autistic son just a bit younger than Tristan waiting too. And lots of people that liked hugs. We got lucky in that waiting room.

  2. Phil Schwarz January 5, 2009 at 02:30 #

    Hear hear.
    The issues that autistic self-advocates care about, such as:

    Housing and household management,
    Postsecondary education/vocational training,
    Access to appropriate and responsive healthcare, and
    Living in the community, as consumer and citizen

    should be issues that parents of autistic children care about too — because their children will be the adults of the coming decades.

    I am an AS adult and also the father of an autistic son. I share the perspectives of the majority of autistic self-advocates on these issues, including that these issues need to be given much greater priority and that resources must be shifted *away* from the endless 50-year chase of causation and “cures” *into* addressing these issues.

    As autistic children grow older, I see so many of their parents eventually come to realize that they need to be on the same side of these struggles as the autistic self-advocates.

    The idea — so often bandied about by those who for whatever reason oppose autistic self-advocacy — that their children have nothing in common with autistic adult self-advocates, is not only false (because eventually, God willing, their children will grow into adulthood), it is poor strategy.

    Much better to look ahead and help us focus public attention and policymaking *now* on the issues that our children will have to deal with in the coming decades, so that the supports they will need then will be there by the time they come of age.

  3. mike stanton January 5, 2009 at 08:49 #

    The UK government did announce an adult autism strategy last year. Part of the problem is that even where services do exist autistic adults are denied access. Social Services provide support for adults with learning disabilities and people whose IQ is normal or above do not qualify for services. Health authorities can support you with your mental health problems but autism is not a mental illness. In effect you have to wait until the system drives you mad before they will help. Finding a service model that can deliver what autistic adults need is not going to be easy.

  4. tinted January 6, 2009 at 00:10 #

    I live in Edinburgh which seems to be one of the few places with services specifically aimed at adult autistics, Number 6, run by Autism Initiatives – it is for those who can more or less manage on their own, but may need support with things like work, housing support, further education, claiming benefits. It also has activity groups and a drop-in. I was in the mental health system for 20 years before that, but the support I got from that actually made me worse, whereas the support I get from Number 6 has been more helpful. I mainly need housing support.

    One problem though is that the groups and drop-ins seem to be full of teenagers and groups of younger adults who all know each other, and I felt too old and out of place, being in my 40s so I stoppped going. In some ways also the place reminds me of a day-hopsital.

    I am aware that parents pushed for this for their soon-tp-be adult offspring. There are support groups for those parents (who get a say in how the place is run but I don’t), and their teenagers who want to leave home are being given housing association places and benefits wihtout much trouble because they have aggressive parents fighting for them, whereas older ones like myself who are struggling to get by so unable to get involved in activism don’t get such a good deal. However I see that in the latest newsletter, one drop-in is to be for over-25s only so I might go along.

  5. RAJ January 6, 2009 at 06:25 #

    Phil wrote:

    “I am an AS adult and also the father of an autistic son. I share the perspectives of the majority of autistic self-advocates on these issues, including that these issues need to be given much greater priority and that resources must be shifted away from the endless 50-year chase of causation and “cures” into addressing these issues”.

    Have you ever been written up in a peer reviewed Autism Medical Journal? Decades of case reports have failed to find any child given an PDD diagnosis who later married and had children. One of the reasons for the low prevelance of autism given is that accurately diagnosed autistic people don’t marry and have children.

    At what age did you receive a PDD diagnosis and was the diagnosis confirmed by a licensed clinician.

  6. Ivar T January 6, 2009 at 11:30 #

    RAJ: I think I would have deleted that comment.

  7. Joseph January 6, 2009 at 13:11 #

    Decades of case reports have failed to find any child given an PDD diagnosis who later married and had children.

    Utter bullcrap, RAJ. See, for example, Hengeveld et al. (2008). How about Renty & Roeyers (2007), titled “Individual and marital adaptation in men with autism spectrum disorder and their spouses: the role of social support and coping strategies.”

    What about Vernon Smith, married, diagnosed with Asperger’s? He’s quite well known and has given interviews. It’s highly unlikely he made up a diagnosis.

    What about the various books sold to women who are married to autistic men?

    But of course, you’ve said before only Kanner autism is the “real autism”, right RAJ? Then how do you explain Robert F, who by age 23 “served two years in the Navy as a meteorologist, is married, has a healthy son, and is now studying musical composition. Some of his works have been performed by chamber orchestras.” (Kanner & Eisenberg, 1956/1973)

    I learned about that one from Michelle Dawson. She also pointed out that at age 8, Robert F was described by Kanner and Eisenberg as “exhibiting unquestionably the characteristic signs of autism.”

    So RAJ, you don’t know what in the heck you’re talking about. Plus a lot of what you say is personally offensive.

  8. David N. Andrews M. Ed. (Distinction) January 6, 2009 at 13:20 #

    “So RAJ, you don’t know what in the heck you’re talking about. Plus a lot of what you say is personally offensive.”

    Hear, hear!

  9. David N. Andrews M. Ed. (Distinction) January 6, 2009 at 13:25 #

    Kev, this is the comment I wanted to make, so the ones waiting can be dumped.

    Have you ever been written up in a peer reviewed Autism Medical Journal? Decades of case reports have failed to find any child given an PDD diagnosis who later married and had children.”

    RAJ… very disingenious.

    My ex-wife, our daughter and I were written up in a paper published in a peer-reviewed journal. Published in 2005.

    One of the reasons for the low prevelance of autism given is that accurately diagnosed autistic people don’t marry and have children.”

    We kinda make a pathetic liar out of you, don’t we?

    At what age did you receive a PDD diagnosis and was the diagnosis confirmed by a licensed clinician.”

    Me: 36½, initially identified by myself, and confirmed by two psychiatrists (one of whom was Digby Tantam).

    My ex-wife: ~32-33, initially identified by herself, later confirmed by Finland’s first autism-specialist neuro-psychologist and then by Finnish neuro-psychiatrist, Pekka Tani.

    My daughter: starting ~18 months, identified by both her mother and myself, then confirmed by a member of Simon Baron-Cohen’s team; then by me (as part of my post-graduate training in educational psychology); and then by a local paediatric neurologist.

    RAJ, how’s it feel to be an ignoramus? No, don’t answer that… your being an ignoramus is probably something you’re very ignorant of. Seriously, though, your comment was wrong in so many ways that I’m surprised you didn’t have the decency to pull it yourself.

    You prepared to give personal details about your life now? I bet you are (NOT!)!

    Just wondering what would be an ‘accurate diagnosis’ of you!

  10. daedalus2u January 10, 2009 at 19:12 #

    I think the disconnect with reality that RAJ is exhibiting is something that is easier for NTs to do than for people on the spectrum. I see that as the trade-off of “theory of mind” for “theory of reality” which I recently blogged about. In a nutshell, because the maternal pelvis is limited in size, the infant brain at birth is also limited in size at birth, hence brain function must be optimized between the two great human mental abilities which require a large brain with lots of information processing capacity; language and communication (via a theory of mind) and tool making and tool using (via a theory of reality).

    A theory of mind only has to match everyone else’s theory of mind. You can do that with a fixed and unchanging theory of mind, or by imposing your theory of mind on everyone else (aka group-think or drinking the Kool-Aid). A theory of reality has to match reality as it actually exists, so you have to be able to change it when it is wrong and it has to be independent of what everyone else is thinking (because they might be wrong).

    The fundamental problem that NTs have is that they don’t have the neural structures to think about ideas in ways other than with their theory of mind. To think about reality they have to anthropomorphize reality until they can map it onto their theory of mind. The problem with that approach is that reality is fundamentally not anthropomorphic. Trying to understand reality by attributing human characteristics to it is to end up with a fundamentally flawed understanding of reality. An understanding that can be worse than useless because it is wrong and cannot be corrected.

    I think this relates to the David Kirby post too. NTs ignore data that doesn’t match their theory of mind; ASDs ignore a theory of mind that doesn’t match the data. They are two different approaches to the trade off of communication and tool making. Everyone is in the middle between those two extremes. That is what the spectrum is.

  11. Billy Cresp January 11, 2009 at 05:14 #

    daedalus2u, I’m glad I don’t have a theory of mind that matches yours cause it wouldn’t verify the ideas you stated. There isn’t a trade off of communication and tool making/reality etc. I wonder what limited brain size at birth has to do with such a trade off. I wonder what any of that has to do with proclivities towards comprehending reality. Such theories seem to me to be too much of a trend, and I wonder what ever happened to the concept of general intelligence.

  12. Joseph January 11, 2009 at 13:57 #

    I wonder what ever happened to the concept of general intelligence

    The concept of general intelligence is a social construct, defined in a circular manner, with no clear basis in reality and little predictive value.

    There are skills and different people have different skill sets.

  13. Billy Cresp January 11, 2009 at 18:19 #

    If general intelligence is just a social construct with no predictive value, I wonder how it correlates with so many measures of success, and with brain size. I wonder why there aren’t any intelligence tests that don’t correlate with each other, and why makers of IQ tests have made the tests as g-loaded as possible.

    I’m convinced that all these attempts to imply that different abilities don’t correlate with each other, are intended to make people think that things are fair, that everybody has a decent level of ability and that nobody is shortchanged by a lack of overall ability. I think that such attempts to get people to get along with each other are distasteful.

  14. Joseph January 12, 2009 at 01:53 #

    IQ is predictive of academic achievement. What it was invented for, actually, is to segregate children who should go to special education. So it was an educational measure from the start.

    The evidence on whether it’s predictive of job performance, for example, is mixed. It seems to depend on the job.

    There’s little to no evidence that IQ affects happiness or wealth, and so forth.

    BTW, no one here is suggesting that everyone is the same. I do believe in equality, but I’m quite capable of realizing that not everyone is identical.

    Now, should people be classified as superior and inferior based on anything at all? There would have to be a convincing pragmatic reason to do so.

    Of course, you can still talk about superior and inferior skills, without talking about inferior or superior people. Cognitive scientists do it all the time.

  15. daedalus2u January 12, 2009 at 02:34 #

    Billy, I explain my hypothesis regarding the trade off of theory of mind vs. theory of reality on my blog. In considerable detail.

    As I am using the term, theory of mind is essentially only useful for communicating with other humans. It is the ability to emulate another human’s thinking so as to understand what they are trying to communicate. If you can’t emulate their thinking, you really can’t understand what they are trying to communicate.

    There is a general agreement among autism researchers that people on the autism spectrum have a different, or an impaired theory of mind and that explains the communication difficulties of ASDs. I think the conventional view of that has difficulties which I explain on my blog.

    Intelligence tests are notoriously unreliable. Different tests give very different results. Since we are talking about autism here, there are individuals who have intelligence scores that are different by 70 percentile points. That is their score on one test is 70 percentile points higher than their score on the other.

    70 percentile points is gigantic. What ever two different tests are measuring, if they achieve measurements that are 70 percentile points different on the same individual, those test are not measuring the same thing no matter how closely the two tests correlate on other individuals. That close correlation must be an artifact and not a true measure of something.

  16. Billy Cresp January 12, 2009 at 02:59 #

    How couldn’t there be a connection between IQ and wealth, if IQ correlates to occupational performance, considering that complicated occupations pay more?

    I don’t know why the issue is talked about only in terms of being superior or inferior, rather than in terms of being more or less fortunate or of having or lacking intellectual endowments.

  17. Billy Cresp January 12, 2009 at 06:03 #

    daedalus2u, I read some of your post, and I guess the theory of mind deficiency seems to make sense in autism, but I doubt it necessarily involves a trade off with “theory of reality” in all cases.

    With a highly limited theory of mind coming from a trade off, I wonder how high the abilities dependent on theory of reality would result. Not everyone with autism seems to have a proportionately higher than average aptitude for theory of reality based things, based on their lack of theory of mind, even though some may have such a circumstance.

    Although the different intelligence tests reveal huge discrepancies for autistics as you mentioned, not every autistic who scores very low on language dependent tests scores correspondingly very high on the non-verbal, possibly theory of reality based tests, so in such cases, I don’t see how there is a trade off where theory of reality abilities are substituted for theory of mind abilities.

    I don’t see how such a trade off is necessitated by the low brain size needed at birth, considering the continued brain growth that happens after birth. And this trade off obviously doesn’t apply to all people.

    I don’t see how either theory of mind or theory of reality abilities could be forwent during the stressful or non stressful times you described. During evolutionary times, how could conditions be so favorable or good that acquiring basic needs wouldn’t be a concern, and how would bad conditions in which there was extra need for tactics in acquiring necessities, necessarily not involve other people?

    Even if those two sets of conditions were true and demanded ability sets as you explained, how would maternal stress level only during the 1st trimester, accurately predict which of those two condition sets the person would live in after birth? What if the maternal stress situation or lack thereof was only temporary, and if the person after being born, would end up in one set of conditions for some time, and then in the other for some other time?

    How could theory of reality’s basis in tool use be the advantage of autistics considering many autistics have motor impairments? How could those with aspergers and hfa, who have lots of language skills, fit into the trade off?

  18. Joseph January 12, 2009 at 13:15 #

    I don’t know why the issue is talked about only in terms of being superior or inferior, rather than in terms of being more or less fortunate or of having or lacking intellectual endowments.

    Clearly, some people are more or less fortunate than others. And this is not limited to biology at all. For example, someone born in the United States is almost always more fortunate than someone born in Ethiopia. Someone born to a rich family will probably be more fortunate than someone born to a poor family. All these situations are socially constructed in different ways.

    It’s quite possible that people could be characterized as having or lacking intellectual endowments. There is such thing as talent, for example. But how do you measure this? IQ tests are not a good means to determine if someone is lacking intellectual endowments. Again, refer to IQ testing of autistics.

  19. Billy Cresp January 12, 2009 at 21:26 #

    I still think IQ is an important test, even though it doesn’t accurately show the intellectual capacity of some people.

  20. Sridharaya February 14, 2009 at 14:48 #

    That?s Too nice, when it comes in india hope it can make a Rocking place for youngster.. hope that come true.

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