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Older Adults in Scotland As Elusive as Nessie

Loch nessEmily Willingham (Forbes) eagerly told us her views on adults with autism on Sept 25, 2013 in an article titled, Where Are All The Older Autistic People? Scotland, For Example.  She had the evidence that disproves the idea of a dramatic increase in a once rare incidence of autism.  Willingham cited a story from the Scotsman called, Older Scots with autism are 'invisible generation,' that announced:

THOUSANDS of older people with autism in Scotland have been labeled an "invisible generation", often waiting years to have their condition identified and facing a lack of support when they are diagnosed, campaigners claim.

The National Autistic Society (NAS) Scotland said in many cases these people had their condition misdiagnosed by health workers, leaving them unable to access services to help them."

NAS Scotland said that autism in older people was underdiagnosed, raising concerns about the measures in place in health boards to diagnose these individuals.

A recent survey of adults with autism by the charity revealed that more than a third have waited three years or more for a diagnosis.
"Too many older adults with autism are missing out on diagnosis entirely and too many are still waiting for their needs to be assessed. And all too often, it's unclear what support will be available for them as they get older. This must change."

Willingham seemed delighted to have evidence that autism has always been around like it is today, we just didn't call it autism.  This bizarre claim is something I call "The Really Big Lie about Autism."  If they can just explain the numbers away, then autism isn't an epidemic.  It's always been here so we can all just relax.  The ever-increasing vaccine schedule is not a factor.

I wrote about this in 2006.

I wrote about it in 2007.
I wrote about it in 2011. 

And I wrote about it in 2013.

It is a lie of course.  Stories are out every single day about training just about everyone dealing children about autism. Why? We should be used to autistic behavior. It's always been here. Why are we having to spend the money teaching teachers, airline staff, librarians, school bus drivers, ER workers, police and EMTs what autism is?

Those like Emily Willingham who try to convince us that doctors in the past just misdiagnosed autism as something else or failed to recognize the milder forms never answer my simple question: If you believe the hidden horde of autistic adults is out there somewhere, then where are the 40, 60, and 80 year old with autism like we see in our children?  I don't want to hear about high functioning adults who might just seem a little quirky.  I want to see full-blown autism--the kind that no one could miss.  I posted a comment to Emily Willingham saying that very thing:
That British study found all the missing adults by asking survey questions.

I don't want to hear about a 50 year old man who lives alone and would rather stay home and read a book than go to a party. I don't want to hear about a retired bus driver with a wife and a family who just discovered he has Asperger's.

What I want to see are lots of adults like so many children that I know personally. I want to see the 40, 50, and 60 year olds who flap their hands, don't speak or who have echolalia or who scream endlessly. I want to see adults who rock and spin and line things up like our kids do, along with ones who bang their heads on the walls endlessly and are still in diapers. I want to see the adults who have to be watched constantly because they'll wander off at will. And I especially want to see middle aged and elderly people that are now called autistic and whose health histories include starting off as normally developing babies, but who suddenly and dramatically lost learned skills and regressed into autism. Finally, I want to see older people with autism who also have the health problems our children do, namely, bowel disease, seizures, and sleep disorders, to name only a few.
Unless and until you can show us adults with classic autism like we see in our children, this proves nothing.

Willingham posted an immediate response telling me I was wrong:

You "want to see lots of adults like so many children (you) know personally"? That's an odd wish given your typical perspective that autism is a "nightmare" and so on; strange to wish your perception of 'nightmare' on someone else. But OK. They are out there, and they grow from children like you describe into adults-adults who, like many adults, don't manifest the behaviors of their childhood because autism doesn't mean "no progress in development." But yes, I know some personally.

You can be dismissive-indeed, you can pull out the "no true Scotsman" fallacy, as I predicted would happen-and say that these people's autism isn't "true autism" as you'd like to constrain it, but that doesn't make it so. Your inability to locate adults with "classic autism" doesn't mean they don't exist. They do, as do children whose autism isn't what you describe, yet they are still autistic, no matter how much you'd like to constrain that definition. But you'd rather dismiss their existence because it threatens a debunked causation hypothesis that you cling to instead of seeking to do what's right by the people who children like yours, based on what you say, will grow up to be.

This is a temporary cover of course and as individual states are left with the enormous task and the cost of providing for a generation of disabled adults who've never been here in such horrific numbers, we'll have to face the truth about autism.  Believe me, if anyone could actually find loads of adults who act like so many of our children do, Anderson Cooper at CNN would be the first to parade them in front of a camera.  They simply aren't there in significant numbers--YET!
And don't think officials haven't looked.  As good as officials are at running the numbers in their population studies, they can't show us where all the adults with autism are.  In  The Age of Autism,  by Dan Olmsted and Mark Blaxill, Chapter 8 is about just that.  Starting with Brick Township in 1999, the Centers for Disease Control and Prevention has been well-aware of the increasing numbers they simply can't explain. 

The final epidemic-denial argument, in addition to diagnostic substitution and diagnostic expansion, is one that instead posits a widespread and systematic pattern of diagnostic oversight. One of us previously labeled this theory the "hidden horde hypothesis'---the suggestion that somewhere out there are hundreds of thousands of adults and older children .whose condition previously eluded detection and have gone through life underserved and undiagnosed.  Besides the logical impossibility of this hypothesis, a number of investigators have searched for this "hidden horde" and failed to locate one.  (AofA pp. 247-248)

The authors went on to talk about several studies in places like North Dakota, Sweden, and Taiwan that simply couldn't find undiagnosed autism in older groups.

Besides not being able to show us the adults with autism, people like Emily Willingham and those at the CDC are contradicted by everything we're reading about autistic adults in news reports all over the country.

I could put up dozens of examples from over the past few years, but I'll focus on just a few.

Sept 18, 2013, WATE-TV Knoxville, TN: Young adults with autism less likely to have jobs, live independently

With roughly 50,000 kids with autism graduating from high school each year, Hilfer said, this is a growing problem that remains to be addressed.
'I think we don't have enough programs in place to offer them the support they need,' [Alan Hilfer, director of psychology at Maimonides Medical Center in Brooklyn, New York] said.

Feb, 2013, Chicago Magazine: When Autistic Children Are Children No More

Despite the countless news reports about the meteoric rise of autism-spectrum diagnoses (1 in 88 American children today vs. 1 in 150 in 2000) and the myriad books and websites about raising youngsters who have this developmental disorder, there is little discussion of or planning for what those kids are to do when they are no longer kids. An estimated 300,000 of them are expected to hit adulthood in the next decade (see 'A Looming Tsunami'). Their fate is an increasingly urgent social problem, especially in Illinois, where the state budget is under immense pressure. "I'm very concerned," says Kevin Casey, appointed by Governor Quinn in 2011 to overhaul the state's Division of Developmental Disabilities. "There are not enough services for everyone. If we don't get the pension crisis solved, it's going to get worse before it gets better."

March 2012, The Stir:  What Happens to Kids With Autism When They Grow Up?

VIDEO: "Once these kids do become adults, pretty much all their government funding and services will go away, even though their need will not."
Julie Liske, Director/Brown Center for Autism: I can't imagine what it will be like with the population that we have continuing on into adulthood.  .What's going to happen?  I can't imagine.  I don't want to imagine it."
The major increase in the autism rate started in the 1990s and has grown tremendously since then.  The first of those children are just now reaching adulthood with many more coming soon.
Liske: By 2023, they're estimating the cost of care for individuals with autism to reach about $26 billion.
Where will that money come from?  Good question, but it's one that we as a nation need to figure out soon, because until we do, the future for children .is not looking bright."
I was very surprised to discover the lack of resources for autistic adults, and troubled to find that there's not much dialogue going on now regarding how we as a nation are going to handle the rapidly increasing number of autistic adults in the future.

I keep going back to a story I wrote three years ago, Anne Dachel on the Rising Autism Numbers.

I cited a number of news reports on the staggering numbers of autistic children across this country and an especially troubling press conference (video) held in 2009 by the CA State Senate Select Committee on Autism.

If Emily Willingham at Forbes is correct about no real increase, then where did all the autistic people end up in the past?  They weren't abandoned on the streets or put in institutions and group homes labeled as something else because no one can find them there now.  We would have had to provide for their needs even without a diagnosis of autism.  If the middle aged and elderly autistic cohorts were really out there, there'd be no problem.  Autistic young adults would go where autistic adults have always gone.  BUT NO ONE---INCLUDING EMILY WILLINGHAM---HAS EVER BEEN ABLE TO SHOW US WHERE THEY ARE.

Anne Dachel is Media Editor for Age of Autism.




Richard Lockwood is doing the usual disruption here on AoA in the Dr Ben Goldacre's Badscience forum style.

But he has helped show that even on the most favourable analysis making wild assumptions in his favour, including assuming there were any adult autistics in the population of West Yorkshire, UK then on the figures he gave one still struggles to get beyond a tenth of the 1% figure he would like the world to believe is true. And the reality is if there were any such adults the true figure was easily vastly less than even a tenth of 1%.

The very same is just as likely to be true of Scotland.

He alleges when he was a schoolboy back in 1983 he was allowed to do "work experience" in a mental hospital with adult patients.

He then uses a personal anecdote with no substantiation whatsoever to give his expert diagnosis from alleged memory of 30 years ago that some of an alleged 180 patients in 6 alleged geriatric wards at Storthes Hall Hospital in Yorkshire UK were autistic.

Storthes Hall Hospital was huge. In 1983 it had 3200 patients. It served an extremely large area and hence a very large population. It was closed down by 1991 following the 1983 proposal and subsequent introduction by Margaret Thatcher of "Care in the Community".

By comparison, today Huddersfield Royal Infirmary has 430 beds for all the different kinds of patients treated there.

Even if all 180 Storthes Hall geriatric patients were autistic as Lockwood claims, that would get nowhere near a figure of 1% of adults. To be 1% just of all the patients in the hospital meant 32 of the 180 would have to have been autistic.

And it is just not possible for all the 180 to have been autistic even if Lockwood is allowed to play his fantasy games. Some patients had been admitted and lived their entire lives at Storthes Hall for being epileptics or for having had a child out of wedlock.

The closest town is the market town of Huddersfield which is part of the Metropolitan Borough of Kirklees.

It today has a population of nearly 150,000.

Take that very small population from just one part of the area served by Storthes Hall Hospital and also assume all 180 geriatric patients were autistic.

That gives a figure of 0.13% and ignores many other well populated areas served by the hospital.

So that is a pretty useful indication from back in 1983 that there were in fact far fewer autistic adults than 1% in the 60 to 90 year old age range [and that is humoring Lockwood's fantasy accounts that there were any at all].

John Stone

Hi Jinkinson

We appear to be going round in circles. This is, of course, the very survey that NAS Scotland hypothesised the existence of the hidden hoard, and this was discussed by myself and others at length in the comments on the Willingham article. If you look on the link you posted my immediate comment at the time (September 2009) was how can you project a prevalence figure for the whole of England on the back of 19 cases? With further probing of the methodology and data the problem only got worse (much worse). I believe there will be adults, even elderly adults who have been missed but not in these numbers which were entirely concocted for blatantly political ends.

The NAS have been in existence for 52 years, they've been alleging a 1% prevalence figure since 1998 yet they still cannot produce the cases. They are still hypothetical, and with every effort they are largely invisible because mostly they probably don't exist and never have.

Jinkinson Smith

Actually, I think I may be able to show you exactly where they are:
Of particular interest is the quote: "At 1%, the adult prevalence [of autism] is the same as that in children."


"THus, you do indeed have your adults with autism--it's called alzheimers when the poison overwhelms adults."

Yes indeed and the cause is largely the same for both babies and elders; the MERCURY in "flu shots" and "vaccines".

The "flu shot" was largely developed for the elderly THEN SLOWLY introduced to EVERYONE.

Do you believe a country that spends 10 trillion murdering innocents in the endless "wars" we are fighting cannot afford to deliver all "vaccines" and "flu shots" in a single dose mercury-free package?

Of course we could! Those at the top WANT this carnage BOTH the "wars" and the diseases of "vaccination".

Incidentally so many good people are vocally outraged at the wars that we seem to be having a good effect. Lets do it with "vaccination"!


"NAS Scotland said that autism in older people was underdiagnosed, raising concerns about the measures in place in health boards to diagnose these individuals."

This just in.

We are urging all elders to report for our newest "vaccination" which will consist of several doses of several vaccines. This one simple painless shot will probably help solve your and societies problems.

o Three doses of our super "flu vaccine". This vaccine although never tested is expected keep most elders out of the hospital or make sure they do not reside in the hospital long.

o Three doses of our super MMR complete with 100 - 1000 mcg of our finest mercury. Although most elders may not need this protection please think of your grand kids.

o One LARGE dose of our shingles vaccine. If you never got a MMR shot you will probably never get shingles but hey you never know.

o Next years "flu vaccine". We are doing a little testing now in response to all the criticism of our not testing our vaccines.

o A few doses of various vaccines that are going out of date.

Please stop by NOW before this wonderful society protecting shot is made MANDATORY.

Jenny Allan

@ Christine MacVicar
I was one of the first to sign the petition, linked by Fiona Sinclair. My 'Sunday' name is Jennifer!!


Dear Carolyn, Kyle's Mom
What I celebrate is the mothers and fathers who are smarter than the doctors and have clear vision of what is happening.
I have to agree with you Carolyn,100%.

Christine MacVicar

You just have to ask the older teachers if they ever had to cope with children who have the behaviours we see in ASD today. Even if you are supposing that these adults were institutionalised as children, all of these facilities are closed now and people placed in the community. A big LD hospital near where I used to live was closed and I often visited the premises before this. Although no person with autism is the same as another one, when you have been around a few, you can pick them out. I can honestly say that I did not pick out any a obviously autistic nor have I seen any in the local community where they are living.There are most definitely people with LD. I am sick of these labels! We have people who are needing urgent medical treatment and the NAS are yet again diverting attention from where it should be. Why can't they fight to have all of our children and faults proper in-depth competent health care. Is this something to do with the money they make from "caring"for our sick kids? I'm also a Scot in my seventh decade. Jenny Allan can you please sign Hunter Wilson's petition to bring Scotland 's Mental Health Act into line with European Human Rights legislation?

Fiona Sinclair

As someone who made a real effort to get the Scottish Government to obtain statistics for the numbers of people in Scotland who have an Autistic Spectrum Disorder, and who has followed the whole discussion about numbers with a great deal of both interest and cynicism, I can say that it is simply that they do not want to know the real numbers, because they know what they will reveal. I tried to persuade the Scottish Government to use the 2011 Census to obtain ASD stats, using the nature of disability question that appeared only in the Scottish and Northern Irish versions of the census - England and Wales did not have this question. As it was, the options for answering this question threw ASD in with ADHD and other conditions, thus rendering the whole exercise worthless - as ADHD is a cover all for a number of conditions and behaviours. The ESAY guesstimates have found only about 2,300 adults with autism amongst those known to local authorities in Scotland. Together with the real statistics of children with ASD from the school census, there are less than 11,000 people with ASD in Scotland - but the `charities` and the government will blithely claim that there are 50,000 - 1 in 100 of the total population.

But the worst thing is that those who claim that prevalence is the same for adults as for children will do nothing to look for adults with autism in the most obvious place - mental hospitals (because, prior to 1981, there was only limited entitlement to education for children with autism and they were literally dumped in mental institutions). The numbers of people with ASD in the mental health system is not counted separately - they are lumped in with people with Learning Disability. If you're interested in more information about this, please see the response that I submitted on behalf of Autism Rights to the Scottish Human Rights Commission's `Scottish National Action Plan` (SNAP) on Human Rights:-
 - see pages 190-220

We know that cancers of children and young people have risen by an average of 1.5% since World War II, which is when the mass production of petrochemicals started to take off. We know that autoimmune disorders are becoming ever more frequent in number. We know that there are classes of chemicals which affect the systems of the body - principally the endocrine and immune systems. We know that these chemicals are not tested for total body burdens, nor for their interaction with each other, nor for their effects on the developing brains and bodies of children, nor for their neurotoxicity .... So, what do people expect? And why is it so very hard for the people in the `autism business` to accept that autism is epigenetic in origin?

A petition has been lodged with the Petitions Committee of the Scottish Parliament, requesting that Scotland's Mental Health Act be made compatible with the European Convention on Human Rights


Please support this petition by signing online and pass on to other

Scotland's Mental Health Act is very similar to the one operating in the rest of the United Kingdom, and most other western countries.

The principal petitioner is Hunter Watson of Psychiatric Rights Scotland. I will be seconding the petition on behalf of Autism Rights, should we be invited to give a presentation to the committee.


Aye ! even Michael Mc Intyre couldn't find scots/ Autism..


Carolyn Kylesmom

I saw my grandmother descend into Adult Autism after a long, normal, vibrant life--I mean, Alzheimer's. SHe grew up in a steel town and there were steel mills that emitted mercury and other toxins. She got her flu shots and probably much of the food was contaminated. In her early 70's, perhaps due to estrogen loss and its protection, against mercury and heavy metals, the same protection that causes more boys to develop autism, she went from sparkly and witty and talkative to confused and emotional and sad and gradually lost her language, her sense of space and time and self, and control of bodily functions. . . so when my son started doing the same at 14 months, I sensed it was Baby Alzheimers . . . and I was terrifed. It was the same thing, except with a baby, no one believes you that they used to be okay, that they were a person who has changed in tragic ways. He had actually started to potty train, he had started talking, he had been interactive and funny. But he started to zone out, just like my grandmother (see the poem linked). THus, you do indeed have your adults with autism--it's called alzheimers when the poison overwhelms adults. My grandmother also had gut problems and was possibly celiac. The difference is that because of Parents who Posted (on age of autism and generation rescue) and thus, because I stopped his shots and started biomed and stopped gluten and dairy, my son is 95% back, which I celebrate every time he jokes with me, as I say a prayer for those yet to be recovered, but my grandmother gradually disappeared. It's the same thing. Different age group. Same toxins. Different mechanism.


Louis, that was sad/funny.

Jeannette Bishop

It's really like they're saying it doesn't matter if a vaccine (or a boatload) triggers autism because sooner or later something will. But even if they found 1 in 50 historically who were as disabled as our children usually from toddlerhood on (which seems impossible from my memory of things, but they'll just claim they are keeping them alive longer or something) or 1 in 50 (or more) who eventually develop a similar disabling condition, none of that negates the role of environment which I suspect is pretty much behind all of the chronic health conditions they have been trying to pin on genes for some time now, and doesn't negate the responsibility to seek to understand such roles in personal injury and act to stop and reverse them.

You can make a few self-interested arguments against what is happening as well. I don't believe we exist because of evolution, but I think evolution happens and that a deliberate or cavalier attitude about weeding out the "vulnerable" to any harmful substance seems to likely increase the risk of the whole race towards approaching globally destructive exposure levels. Also, I believe all of us are likely particularly vulnerable to some substance.

But even if not, all deserve protection from exposure that will harm them even if the "greater good" might be invoked, IMO the greater fatalism.

White Rose

Why dont they try Denmark ?
I'm sure they can find older autistic people there

Louis Conte

I found a whole bunch of adults with autism when I investigated the cases compensated by the National Vaccine Injury Compensation Program.

I would be happy to tell Emily where to look for them.

John Stone

PS This was my final comment on Emily Willingham's blog (addressed to autism practitioner Mitzi Waltz):

"I am absolutely sure that there were autism cases before 1938 and also about the horrific institutional treatment of people before and since. Nevertheless Kanner was not finding many cases of his “autism” and apparently not at all before 1938. But unless autism is determined purely by genes (and that really is a hypothesis which has been completely disproven) it is something you would expect to fluctuate according to environment and environmental exposure. So, if Kanner says he wasn’t seeing it he quite possibly wasn’t.

"I note that you studied at the Autism Research Unit, Sunderland where the environmental causes of autism have been studied for many years. I don’t see why we would expect autism to proliferate at a steady 1%. Alain Couvier made some interesting comments on the Wing paper which has become an ideological fall-back position, but splicing two earlier papers together like that from two different places and times and projecting the results on to a third population will scarcely do.

"Also, I note that we have known about higher functioning autism for some time. I was astounded c.1971 when the director of a local mental health hospital gave a talk at our school and mentioned that he’d been reading a biography of Beethoven and he was sure he was autistic. Fast forward another 25 years and tests are performed on a lock of his hair which show that he suffered from extreme lead toxicity.

"Twin studies don’t bear out high concordance (particularly when the similar environmental experience of twins is taken into account), gene studies talk about “susceptibility” and calculate ever more tenuous associations: the project has failed (but is very expensive and provides a lot of employment). Environmental studies have always have been the Cinderella when it came to funding – never taken away from the resources flooding through the other end. Paul Shattock of ARU came and told us this in Haringey in 1997 or 8, and nothing has changed since."

John Stone


It is, of course, possible. Personally, I wouldn't claim anything about zero presence globally speaking in times past, however I do take Dan and Mark's point that Kanner - in the US - was seeing a very few such cases after 1938 and hadn't seen it before then.

Richard Lockwood

@John Stone:

Some fair points, but that was one hospital in the area, and by the age of 60,70,80+, a fair proportion of any population will have died from various causes.

Some may well have been suffering primarily from other diagnosed conditions, and not had an autism diagnosis, but would they today - given that they were displaying what Anne Dachel describes as the symptoms of "classic" autism - in other words, diagnostic substitution, or increased awareness that autism was another of their "conditions"? I suspect quite possibly.

There were plenty other adult wards at Storthes Hall - I was only involved with the "low risk" geriatrics.

Jenny Allan

Richard Lockwood tells us about "60, 70 and 80 year old men and women at Storthes Hall Mental Hospital, Huddersfield, who flap their hands, don't speak or who have echolalia or who scream endlessly"

We are all supposed to assume these persons were 'genetic acquired' autistics, who had never been previously diagnosed as such, but of course, without knowing their history there are actually myriad explanations for such behaviour, including Alzheimers and cardiovascular disease, in older persons. Richard Lockwood is being mischievous when he implies AOA moderators will refuse his comments. In fact, AOA welcomes 'civilised' debate.

As a special needs teacher for many years, I lived through an eighties and nineties 'explosion'of ADHD and autistic like conditions in children. In Scotland our Government Education Department is having to fund a huge increase in special dedicated units for autistic children. Teachers are struggling to cope.

As a Scottish Citizen in my seventh decade I never encountered anyone autistic prior to the increase in child vaccinations of all kinds post 1960s. There have always been older persons with dementia.

John Stone


Not without point although it might be hard to distinguish between various senescent conditions, schizoprenia etc - above all I share your horror at the way people were treated, and unfortunately sometimes still are. You are also talking about 120-80 people some of whom may have been autistic. But bear in mind also when I last enquired locally about how many cases we had in our local school system in Haringey c.2008-9 it was around 600. If you had gone back to the early 90s it would probably have been about 20, monitored by essentially the same people. I know from talking to the local professionals that there was no deliberate change in diagnostic practice - and finding all these cases was quite against anything that central government wanted.

Richard Lockwood

Well, in 1983, when I was doing work experience, there were several (at least four - very possibly six) wards full (around 30 people per ward) of 60, 70 and 80 year old men and women at Storthes Hall Mental Hospital, Huddersfield, many of them displaying exactly the signs of autism that you describe. "flap their hands, don't speak or who have echolalia or who scream endlessly" - yes, all that. Storthes Hall was one of the last Victorian "asylum" style mental hospitals in England - feel free to look it up.

Will this get through moderation? I doubt it.

John Stone

I contributed very extensively to this blog. Emily is locked into this "they must be there so they are there (even though we can only find the odd one) fallacy" which seems to be ubiquitous in Scotland, and which is only supported by very dodgy papers by Brugha and before that by Wing. Perhaps by way of free association Emily cam back at me and another (interesting) commenter ("Alain Couvier" which is likely not his real name) who had pointed out the many anomalies in the papers with the repeated enigmatic retort "No true Scotsman..".

I have to admit I had to look it up but it turns out the so-called "no true Scotsman fallacy" would be to argue that someone isn't a Scotsman on the grounds that he doesn't do certain Scottish things like drink whisky or wear a kilt. It was a comment which apparently had nothing to do with anything much but enabled Missy Emily to affect a superior air.

Of course, Forbes are unlikely to hire anyone who is going to offend the punters but whether Emily is really "God's gift" is another matter.

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