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Auditing Autism in the UK

9 Jun

The National Audit Office investigates and reports upon the value for money that the British taxpayer gets from our government’s expenditure. They claim to be doing a good job. For every pound the NAO spends it says it saves the government another nine pounds. We will have to take their word for that.

The NAO have recently turned their attention to autism with a report, “Supporting people with autism through adulthood.” In a welcome move towards inclusion the NAO have produced a video illustrating the themes covered in this report and an easy read version as well. To judge from this report it would appear that the high costs to society associated with autism that are claimed by some researchers do not represent the true cost of autism at all. Lifetime costs running into millions of pounds per person and annual costs to the economy in excess of £28 billion a year are sometimes used to argue for drastic measures for prevention and cure. In the past I have questioned the assumptions behind those calculations. But the NAO starts by accepting those figures and then raises some interesting questions.

  1. How much of the expenditure on services is crisis management for individuals who are not provided with a basic level of support? How much would be saved if more cost effective supports were in place that obviated the need for expensive emergency interventions when things go pear shaped?
  2. How much of the existing support represents money well spent and how much is wasted on ineffective strategies that are followed because there is nothing else available?
  3. How many adults are deemed ineligible for services because the criteria are too narrow and do not take account of the need of those with Asperger syndrome or high functioning autism?

They identify two key weaknesses at present. There is a lack of data to inform strategic planning for autism specific services at all levels of government. So three quarters of local authorities do not have a specific commissioning strategy for autistic adults. There is a lack of knowledge and understanding of autism amongst frontline workers. Four out of five family doctors want more guidance in order to give a proper service to people with autism. Two hundred out of five hundred disability employment advisors have had no training in autism.

This last point is crucially important. It is unrealistic to expect autism specific services for every autistic adult. Most people, if they were helped with work and housing, could probably manage quite well most of the time. But when they do need support they should be able to turn to generic services that are autism friendly.

But autism friendly services do not just happen. They have to be part of the government’s strategy, supported by statutory guidance and resources for training. Autism specific services will also be needed. The NAO estimates that it would cost £40 million to provide specialised health and social care teams across the whole of England. But if these services were used to help people into paid employment and other forms of independent living they would actually save money.

  1. They would only have to reach four percent of autistic adults to break even.
  2. Reaching six percent could save £38 million a year.
  3. Reaching eight percent could save £67 million a year.

The NAO report is not just about saving money. It is about spending money effectively. They suggest that even a zero cost saving is OK if what is spent actually delivers improvements for service users. But they also point out that savings can be made by making timely and effective provision available. This report is an important tool in our campaign to influence government strategy during the period of public consultation ahead.

As Mark Lever, NAS chief executive said:

“In the current economic climate the Government cannot possibly ignore the huge potential cost savings and benefits identified by Parliament’s spending watchdog, of providing adults with autism with the right support at the right time. Neither the Government, people with autism nor the taxpayer are getting value for money from existing autism services and support, leaving those affected by the condition feeling isolated, ignored and often at breaking point. This is simply unacceptable.
Real savings will only be made if all Government departments work together to address the gaps in understanding and specialist support, enabling people with autism to lead more independent lives. We are, therefore, calling on the Government to ensure the NAOs critically important findings are reflected in the forthcoming adult autism strategy.”

What I really like about this report is its practical approach. There are no grand schemes, no injunctions to Defeat Autism Now or at least within the next five years. Instead they propose relatively modest changes to the way we plan and organize delivery of key services that take account of the needs of autistic adults. If this report is implemented it should save the government a small amount of money but it will save autistic people from a lot of the unnecessary grief they encounter with the present system.

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Bravo Huffington Post

28 May

Yep, you read correctly. I’m not even sarcastic.

Guess who the new Huffington Post blogger is? Ari Ne’eman of the Autistic Self Advocacy Network.

Ari’s first post is a good one, Health Care Reform and the Disability Community. Ari has done an excellent job of keeping focus on the real issues facing the disability community in general and the autism community in specific. Ari recognizes that we in the autism community are a part of a greater whole–the disability community.

Ari’s post is quite thorough, quite well thought out. He is factual and logical.

Take a moment and leave a comment–let him (and the Huffington Post) know how much we appreciate him fighting for our communities.

Autistic man tortured

19 May

If you’re the parent of an autistic person, or if you’re an autistic person then this story is nigh on unreadable. But read it we should and must. Everytime someone says they;ve had enough autism awareness then point them to this story, horrifying as it is.

As a mentally challenged man screamed and pleaded for his torture to end, his attackers held him down, shot him repeatedly with paintball and BB guns, and branded him with searing coat hangers. “Mommy, mommy,” the victim screamed, to no avail.

Here was a 21 year old autistic man who had challenged himself enough to be holding down a job at a local food processing plant in Alva, Oklahoma, USA. And ehre also were three other ‘men’ who wanted to make a ‘Jackass’ style video. But rather than just use their own bodies, they thought it’d be good to take advantage of someone who was vulnerable.

The video depicted Wallace [one of the attackers] and others branding the letters B, M and C into Dahling’s chest, the affidavit states.

Wallace told police those letters stand for boredom, mayhem and chaos, Orcutt [police representative] said.

During the branding, the victim is heard screaming, “No, no, no, stop it, I don’t want to go through any more pain,” according to the affidavit.

After being shot several times with the BB pistol and another gun, the victim cries and attempts to leave, but is cornered by Wallace and another man and told to get down or he will be shot again, the affidavit states.

He screams, “I’ll be good, I’ll be good” but Wallace uses the gun barrel to push the man’s head to the floor, according to the affidavit.

In another scene, Dahling is shot several times with a paintball gun, then lifts his shirt to reveal welts.

What do you do with ‘men’ like this? According to the paper, the ringleader has previous for torturing an animal and abusing a two year old. What a big brave guy. I can only hope that ‘men’ like these are in the minority and that they get exactly what is coming to them by way of a long jail sentence.

Autistic man dies

12 May

In November 2005, 26 year old Mr Jesse Moores died after choking to death on ‘a golf ball sized piece of food’.

Moores was autistic with a low IQ (therefore classed as ‘severe’. He was described as having the mental age of 8). He lived in the Chine Care Home in Enfield, North London, a residential group home owned and operated by Robina Care Group Ltd. He had a history of choking incidents.

The day Mr Moores died, the home was being managed by Deputy Manager Patience Etchu-Abangma. Also on duty with her that day were two agency care workers.

It transpired during court proceedings that Etchu-Abangma had a secret second job and that she had left the home on that day to work at that secret second job. Before that fact came out however, she lied and said she was out shopping at Boots.

When one of the two agency staff called Etchu-Abangma to tell her that Mr Moores was choking to death, Etchu-Abangma told her not to phone an ambulance for 15 minutes. This gave her time to leave her second job and return to the care home. Only then was an ambulance called.

During the police investigation following Mr Moores death, Glen von Malachowski, who was chief executive of company Robinia, said ‘shit happens in our business’.

Some people are pure scum.

http://www.telegraph.co.uk/news/uknews/4801880/Care-home-left-illegal-immigrant-in-charge-as-resident-choked.html
http://www.disabilitynow.org.uk/latest-news2/care-group-fined-a31-4m-in-jesse-moores-case
http://www.google.com/hostednews/ukpress/article/ALeqM5gFQx9OWLwIuu90RSisqLabRiVZ7w
http://www.thisislondon.co.uk/standard/article-23678359-details/S**t+happens+,+says+boss+after+care+home+death/article.do

A better future for autistic adults

29 Apr

Following on from the National Autistic Society’s I Exist campaign and the massive support for the Autism Bill in Parliament the UK Government, after working closely with an external reference group chaired by NAS chief executive, Mark Lever, has launched a

consultation process for the first government strategy to support adults with autistic spectrum conditions (ASC) to live life as full and equal citizens.

The consultation documents can be accessed online at the Department of Health. At present the consultation documents are print only but should be available to complete online before the consultation period ends on September 15th. The consultation only applies to England. The Welsh Assembly Government already has a Strategic Action Plan for Autistic Spectrum Disorders (ASD), published in April 2008. An ASD Strategic Action Plan is being finalised for publication in Northern Ireland and in Scotland the ASD Reference Group has published guidance to local agencies on commissioning services for people with autism. While these separate arrangements may reflect local differences it will be interesting to compare them in order to see how adults are being served across the United Kingdom.

The government has outlined 5 areas of need: social inclusion, health, choice and control, awareness raising and training, and access to training and employment. The NAS has a broader range of concerns on its website which it would like people to consider when completing the government questionnaire.

So, after years of being ignored or ineligible, autistic adults are finally being considered and their views taken into account in formulating statutory guidance for local authorities. So spread the word and mke sure the government hears your views.

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Polly Tommey Woo-ing Gordon Brown

15 Apr

Polly Tommey was due to see Prime Minister Gordon Brown today after a successful billboard campaign, costing a reported £500,000, that invited Gordon Brown to meet with her if he wanted to save £508 million pounds. Ms. Tommey’s son is autistic and she is concerned that there is a terrible fall off in provision and support when you transition from school to adult services. She wants the government to invest in autistic people and her message is that appropriate support will save the government money by lifting autistic people out of benefits and into paid employment. As she says in her press release:

“We want better support, we want politicians to engage with us and we want the acknowledgement and support that our children deserve as fully contributing members of society.”

This is all very admirable. But Dr Michael Fitzpatrick has written An Open Letter to Gordon Brown in which he questions how she expects to achieve her aim.

In her campaign posters, Mrs Tommey, whose 12-year-old son Billy is autistic, offers to save the UK government £500 million a year by helping people with autism to get jobs. But it is not clear from the posters how she thinks this can be achieved. However, The Autism File, the magazine she edits, focuses on two issues: supporting the campaign led by the former Royal Free Hospital researcher Andrew Wakefield against the MMR vaccine and promoting ‘unorthodox biomedical’ treatments for children with autism.

The main point that Dr Fitzpatrick makes is that if her message to the prime minister is the same as the one she promotes in The Autism File she would be well advised to think again. He ends thus:

If she wants better provision of diagnostic, supportive and educational services, she might consider adding her energies to the long-running campaigns of the National Autistic Society and others, currently focused on the Autism Bill.

Ms Tommey’s supporters have been quick to respond. At The Age of Autism, Teri Arranga accuses Dr Fitzpatrick of carrying out an inquisition against the Autism Trust and quotes Trust Chairman. Oliver Jones who responded to Dr Fitzpatrick as follows:

I am both shocked and astounded having read your open letter on the Internet this afternoon. How dare you act in such an ill informed manner about a campaign that I and many others have invested significant time and effort in – when you evidently have no idea about what we are actually focused upon.
I find it remarkable that a professional person can take such an aggressive stance as you have done about The Autism Trust’s campaign without having the decency or following proper protocol by making contact with any of the Trustees and specifically myself to determine the objectives and intent of our forthcoming meetings.

The tone of the article is plain. The Autism Trust is trying to improve services and quality of life for autistic people in the UK and Dr Fitzpatrick is misrepresenting their aims and undermining their efforts because he resents Ms Tommey’s support for biomedical interventions. Having read the Autism Trust’s lengthy press release I agree with Dr Fitzpatrick.

“A Personal Campaign”

The press release is clear that this is Ms Tommey’s “personal campaign.” She wishes to speak to Gordon Brown “on behalf of the thousands of mothers of children with autism in the UK.” It repeats that this is “Her campaign” and highlights her role as Editor-in-Chief of The Autism File.

Credibility

Ms Tommey obviously has a lot of business acumen and is an astute campaigner who is adept at using the media to position herself “as one of the leading figures in autism in the UK.” But, as Dr Fitzpatrick points out, her support for discredited notions about MMR and autism and her promotion of unproven treatments do call her credibility into question. This is underlined by errors in the press release. Ms Tommey claims that:

autism numbers have increased dramatically in the last twenty years from 1 in 10,000 in 1988 to 1 in 100 today.

As long ago as 1966 Lotter established a figure of 4 in 10000 for severely autistic children. When Wing and Gould examined the broader autistic spectrum in 1979 they found 20 in 10000. The present figure of 100 in 10000 includes people without significant cognitive impairments who were only added to the diagnostic criteria in 1994.

But Ms Tommey uses these false figures to argue that we face a fresh challenge as for the first time a significant number of adults enter the system. This is a direct contradiction of the NAS I Exist campaign which has successfully persuaded the government that generations of autistic adults have been ignored. The NAS is continuously engaged in discussions with government ministers and officials to get a commitment to action based on the provisions of the Autism Bill which enjoys unprecedented support amongst MPs.

Centres of Excellence

The Centres of Excellence proposed by the Autism Trust seek to provide residential communities in rural locations that provide a “safe haven” for autistic adults. They hope that such centres will provide support for autistic adults in the community, setting up in business or becoming self employed. But most people live in urban settings so it hard to envisage how they will benefit. And despite Mr Jones’ protests it is clear that the Autism Trust is as committed as Ms Tommey is to nonsense cures and treatments. Each centre of excellence will feature a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as training centre and a conference centre promoting these “biomedical interventions.”

I think that Mr Jones’ complaints against Dr Fitzpatrick are disingenuous. If anything Dr Fitzpatrick should be taken to task for failing to mention the Autism Trust in his open letter. At a time when service providers are moving away from the model of self contained autism communities in favour of closer integration of services within everyday society the Autism Trust proposes to build a worldwide network of such communities.

They expect local authorities to fund places in their residential homes while they are free to develop profitable spin offs promoting quackery. Or, as they describe it in their financial model:

The capital development and business operating model will depend on the facility mix and local partners – as well as the engagement and support available from local and national government. A mix of charitable status and commercially self-standing models will be explored in each location.

Danger

The greatest danger is not that Ms Tommey and the Autism Trust are going to persuade the government to follow their lead. But by muddying the waters with their campaign they may give the government an excuse to back pedal on existing commitments while they consult with this self appointed autism constituency. The best way forward is to get behind the NAS campaign and keep up the pressure for the provisions of the autism bill to become law.

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Study: Adults with Autism…

19 Mar

…can live fulfilling lives. Or, so say researchers in Utah, according to a recent news story. (study abstract here)

The news story is basically an echo of one that came out last Fall. Kev blogged it then.

I thought it worth blogging again, though. Not because of the good-outcomes nature (although that is a good thing to hear). But, as one of the researchers put it:

Adults with autism haven’t received the attention from researchers that children have…

It is beyond good to see research on adults with autism. It is vital. Even if you are in the “most people with autism are children” camp, learning from today’s adults just plain makes sense.

The adults studied were part of a joint UCLA/University of Utah study in the 1980’s. In this followup, the researchers interviewed people who had IQ’s > 70 in the 1989 study. As Kev noted in his blog post, these are not people with PDD-NOS or Asperger’s, they met DSM-III criteria for autism.

The authors found about half of the study subjects had “very good” or “good” or “fair” outcomes:

By these measures, the researchers found that 24 percent of the participants had a very good social outcome; 24 percent had a good outcome; 34 percent had a fair outcome; and 17 percent were rated in the poor social outcome category. No one’s social outcome fell into the very poor category.

Some of the details include:

About half of the 41 study participants were employed in full- or part-time competitive jobs. Six were living independently, including three who owned homes. Three were married with children, and one person also was newly engaged to be married. Eleven of the participants have driver licenses and the same number had a higher IQ than when assessed 20 years earlier.

IQ was not the main predictor of good outcomes. Instead, independent living skills were key.

The most important factor in whether study participants had a better living outcome was their degree of independence in daily activities—being able to take care of themselves, hold employment, live on their own or at least semi-independently, and take part in meaningful social relationships, according to Farley. Although IQ significantly influences social outcome, daily independence plays an even greater role in determining how well people with autism function, the researchers said.

To me, this seems to be somewhat circular reasoning: if the people are more independent, they have better outcomes. I need to read the actual study and see how they measure outcomes.

It is worth noting that “can live fulfilling lives” is not the same as “will live fulfilling lives”. A large fraction of the adults had “poor” outcomes. Also, we would all like to see fewer people even with “fair” outcomes.

About half the participants could not live or work independently, and the majority lived with their parents, although many of them had a high level of independence in their daily activities. Social isolation is a serious problem as well—44 percent of the group has never dated. In addition, 60 percent of the study participants, even some of those who had achieved independent living and working, were prone to anxiety and mood disorders and worried about a social stigma attached to autism. The IQ of eight participants declined since they first were evaluated 20 years ago.

One question I would have about the study is whether there is any bias in the selection of the study subjects. Out of 241 subjects in the original 1989 study, only 41 were reported on in this recent study. How they were selected for the followup could make a big difference.

Also, I will add that some will characterize this as “Look, another post saying we don’t need to offer any treatment for people with autism”. All I can say is, those of you saying that either have major reading comprehension problems or you have an agenda.

The big question in my mind is to find out what differentiated those who had good outcomes. One suggestion made by recent news sources–the support system of the Latter Day Saints (Mormon) religion/culture which predominates in Utah. According to one story:

And the LDS Church community may play a role in their success, researchers suggest.

“We wouldn’t be surprised if a lot of what contributed to those folks’ better outcomes is the unique social structures in Utah,” said Megan Farley, research associate at the Utah Autism Research Program and lead author of the study, published online Wednesday in Autism Research journal.

“While kids are still made fun of here and they face stigma … there’s this really strong network of multi generational support that are able to foster these kids’ development,” she said.

My first reaction was to brush this off as self-congratulatory. But, they aren’t saying it is the religion. Instead, it is the social structure.

Perhaps the most intriguing statement in the above news story was given a very short comment:

All but six of the adults in the study were still considered autistic.

Wow. 6 out of 41 no longer have autism diagnoses? I really need to get this paper and see if they have PDD-NOS or AS diagnoses. But, consider a 15% “recovery” rate. Begs a lot of questions. As Kev noted in his blog post, it seems unlikely that any of these individuals received biomedical interventions. For that matter, few if any may have received ABA.

Facebook is the new vaccines

11 Mar

I thought I’d maybe travelled a couple of weeks forward in time and was reading a particularly stupid April Fools joke news report when I saw the Daily Mail were reporting:

Of course, we do not know whether the current increase in autism is due more to increased awareness and diagnosis of autism, or whether it can – if there is a true increase – be in any way linked to an increased prevalence among people of spending time in screen relationships. Surely it is a point worth considering,’ she added.

‘She’ in this instance is Professor Susan Greenfield of Oxford University, which just goes to show that even a massively intelligent person can also be a monumental idiot on occasion too. Some other gems of wisdom include:

‘My fear is that these technologies are infantilising the brain into the state of small children who are attracted by buzzing noises and bright lights, who have a small attention span and who live for the moment.’

Buzzing noises and bright lights. I think these opinions reflect the lack of experience Professor Greenfield has with computers rather than any accurate reflection of how a PC or Mac actually works.

Note something about this totally ridiculous piece of journalism. They use buzzwords like Twitter and Facebook that the average uninformed Daily Mail reader might’ve seen but have no real idea about. They also clearly are talking about the opinions of one woman. At no point is any study or science referenced to support this Professors opinions.

In the eighties the Daily Mail was one of those newspapers convinced that ‘video nasties’ (straight to video low budget horror movies) would bring about the end of civilisation. In the nineties they were of course standard bearers for antivaccination beliefs. In the noughties they’ve published a few pieces on the evils of the nasty Intraweb.

But of course what really annoys me about this is the fastening on to autism. Its explained how naturally autistic people function online is a possible example of how the online environment (Facebook, Bebo, Twitter etc) are (oh dear god!) rewiring the brains of our children and making them autistic.

Never mind the fact that most new cases of autism are diagnosed in kids under three whos only interaction with a PC up to that point would be to try and push a rusk into the DVD tray. Never mind the fact that adult autistics are pretty wary of social networks at first. Lets just find another way to demonise autism and blame it on something else for which there is no supporting science whatsoever.

IACC Strategic Plan: Good for us?

6 Mar

By ‘us’ I mean my idea of what the neurodiversity community is.

The IACC released their strategic plan for the future direction of autism research yesterday. This is the basic plan that will form the basis of US (and probably world) autism research for the next 10-20 years. It sets out what it thinks the problems are, what should happen to address those problems and what specific research targets should be set to help address those problems.

So, is it good for us?

On one hand it is. In some places the document makes a clear distinction between the need to address the disabling issues that autism can bring and leaves aside cure language:

It is critical for research to identify the methods and approaches that can be used to prevent the challenges and disabilities of ASD.

Cool. Fine by me. And yet later on in that same paragraph:

Having sound research on the risk factors and the environmental triggers for ASD ultimately may allow us to achieve the goal of prevention: preventing the development of the disorder in some people at risk or reducing the degree of severity in those affected.

Hmmm. Possibly less good. I don’t even really quibble at the ‘reducing the degree of severity’ phrase but prevention? Even researchers as established and august as Simon Baron-Cohen and Tony Attwood have suggested this is not such a great idea. I also don’t believe its a great (or necessary) idea.

There’s lots of good talk about support and education for adults and the need to recognise that autism is not a childhood condition. Amazing that such talk is needed when adults clearly make up the larger percentage of the autism population.

I’m not sure this is a cure-based document. I do think its a define-autism-as-a-medical-condition document which is again not such an accurate idea.

And so we turn to the ‘v’ word. Vaccines are given fairly short shrift in the plan. I didn’t think so at first. When I read this paragraph I was dismayed:

To address public concerns regarding a possible vaccine/ASD link, it
will be important over the next year for the IACC to engage the
National Vaccine Advisory Committee (NVAC) in mutually informative
dialogues. The NVAC is a Federal advisory committee chartered to
advise and make recommendations regarding the National Vaccine
Program. Communication between the IACC and NVAC will permit each
group to be informed by the expertise of the other, enhance
coordination and foster more effective use of research resources on
topics of mutual interest. Examples of such topics include: studies of
the possible role of vaccines, vaccine components, and multiple
vaccine administration in ASD causation and severity through a variety
of approaches; and assessing the feasibility and design of an
epidemiological study to determine whether health outcomes, including
ASD, differ among populations with vaccinated, unvaccinated, and
alternatively vaccinated groups.

This is in section III under the heading ‘what needs to happen’. As I say at first I thought this was terrible. But then I read it again and noticed that what the plan is actually saying is that the IACC and NVAC should talk about these things. They’re not committing money to them.

Vaccines in fact feature nowhere as a short or long term objective in the whole plan and are mentioned again once as a possible research opportunity for people to keep an eye on any developing science.

Overall its a mixed bag. Good on vaccine stuff, good on recognition of need for services, good for recognition of adults but ambiguous at best on its intent for the idea of curing autism.

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.

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

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

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

HIGHLAND
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.

LANARKSHIRE
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.

ORKNEY
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?

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