How Many Adults in the UK Have Autism? Finding Out Will Be a Challenge
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In short, this is certainly a question worth answering. But information available so far begs the question "how the heck will researchers manage to get the answer?" According to BBC News:
For the first time the government is to calculate the number of adults with autism in England.Apparently, the plan is to focus on a sample of the population, and extrapolate statistics based on what's found. But - will every adult in the sample be tested for autism? What kinds of tests will be used? How will so many adults be convinced to TAKE such tests (unless they're already concerned that they are diagnosable)? Will the outcomes provide information on various subtypes of autism (e.g., X number have Asperger syndrome; Y number have PDD-NOS, and so forth)?Announcing the £500,000 project, Care Services Minister Ivan Lewis said autistic adults are too often abandoned by health and social services.
The National Autistic Society welcomed the move, saying it hopes it will mark a turning point in the way the needs of adults with autism are met.
The statistics will be used to form a national strategy.
The challenge for the researchers will be to make sure people whose autism has not yet been diagnosed are not overlooked.
What's your feeling about this project? Does it seem doable? Is it worthwhile? Will it make a significant difference in our understanding of autism?
Comments
I think when you’ve got groups like Autism Speaks trying to develop in-utero genetic tests for autism so that parents can abort autistics before they are born, you are not going to find too many people admitting to be autistics for fear of some law being passed that prohibits them from reproducing.
This is the legacy organizations like Autism Speaks are leaving behind, and it is a shame people support them.
On a more practical note, with autism being genetic in origin, it would mean that for true numbers to be known, everyone would need to take a genetic test to see whether or not they are on the spectrum. This would be cost prohibitive and violate personal privacy.
Any parent with any brains would not register their kid for fear of them having to do something compulsory that goes against the child’s interest. I would not register myself or my child.
actually, Mike, at this point there IS no “genetic test” for autism (unless you’re thinking of Rett Syndrome or Fragile X). In order to test for things like High Functioning Autism, Asperger syndrome or PDD-NOS, you’d need to use a battery of behavioral and written tests. Hard to know how that could be implemented even if everyone thought it was a terrific idea!
Lisa (autism guide)
This is a tough subject to try.
1) Yes, we should try to find accurate numbers of adult autistics (and, by that, I mean adults with any ASD).
2) Is it doable? It will be very, very tough. It may not be possible to get an accurate survey. Does that mean that we shouldn’t? No. We will likely not only learn more about how many adults with autism/ASD there are, but we will learn more about how to screen for adults with autism/ASD.
If nothing else, finding more adults with autism/ASDs, even if the count isn’t completely accurate, will give us more adults with autism/ASDs to understand and learn from.
The minor question that will have many worried is, will this address the idea of the ‘epidemic’? For the ‘epidemic’ argument to be made, one needs a low count of adults with ASDs. I don’t expect much support from those pushing the ‘epidemic’ and vaccine causation.
The thing is that in the UK Autism Speaks have a very watered down mantra (at the moment) that they feed to people here who are blissfully unaware of the very much hidden agenda of this group. There are people starting to speak out about Autism Speaks but people here pretty much have a limited knowledge about this group.
At the moment in the UK if you are an adult with AS or HFA then your chances of having any kind of provision or support are almost nil. We have initiatives like ‘Valuing People Now’ which covers provision for adults with core autism but excludes adults with AS and HFA. Service Provision here is wrapped around IQ. Part of the reason why things are so dire is because children with AS and HFA do not qualify for provision because they do not meet the criteria. Because they do not meet the criteria they are not listed on any of the services providers books so they do not exist – hence the name of the National Autistic Societies latest campaign ‘I Exist’ How do you pass over a list with hing to an adult service provider?
While I agree that having a diagnosis could be a double edge sword there are some adults in desperate need of provision and are reaching crisis point or even worse before they come under someone’s remit. We need to no how many adults we have with autism and I do not believe that this will make any difference to the way in which autism is viewed as a whole. Our Government already knows for sure that the numbers of children marching through the ranks towards adult service is growing daily. It also knows that parents with autistic children will not sit back quietly and do nothing. This audit will at last recognise here in the UK that children do not grow out of their autism when they reach 19 and we can hopefully begin to put something in place for them. It is long over due.
I’m just curious, as always, as to where Autism Speaks comes into this? And there are plenty parents who know they are carriers of other genetic disorders and no one stop them from having kids- there’s also no evidence to truly say if someone with autism reproduced, that they’s have a child with autism.
How about bi-polar? There’s really no genetic test for it yet it’s known to run in families, they diagnose it much as they do autism to rule out other things that mimic it, and there are triggers for it. How many of those with bi-polar could be misdiagnosed? Under diagnosed? Forced never to have kids due to they could very well pass it on? What if a genetic test was created to see if the unborn child would have bi-polar? People wont just then stop at autism from reproducing and I would bet the general population would be jumping up and down at any law introduced to prohibit reproduction.
Back to the topic. The focus of this article and info is also a concern in the USA, the lack of programs once the child is out of the educational system and becomes an adult. Few countries have any sort of help and the USA’s SSI is hardly anything in means of support. I’m curious if the UK will not only look within the public, but where else? Do they have institutions where some people may have been sent as they do in the USA? And if so, will they help them as well?
On one hand, it’s great that finally UK government cares about Autism issue at all. However, there are no voices hearde of adults with Autism - no representation in Media, in Parliament - or in any authority at all. We’re still very much the ’subjects of interest’, ‘curiosities’ (read FREAKS which I disagree with).
As a person with 2 university degrees and foreign-born (only lived in UK for 18 years), after my official diagnosis of Asperger’s I’ve actually found myself being MORE discriminated against than ever before because of my Autism (which I refuse to hide). Until Autistic adults are taken seriously - nothing will change. My older son has diagnosis of Autistic traits and I worry for his future, even though he’s academically very bright. I totally disagree with Autism Speaks ethos: it’s patronising to Autistic people and I’d say even hostile (are they threatened by our independent thinking? our intelligence and driven disposition?) My parents aren’t here to fight for me, but I’ll fight for my son to have the best chances to succeed in life, no matter what it takes.
It seems a good idea to find out how may people have ASD. It will give the Government some figures to work with and to allocate more resources.
As a support/care worker working in the comunity with eldery/middle-aged people labelled as having “a learning disability”. A number of these I belive have ASD, But its very difficult to get such people diganosed, even if they want too.
No seems interested-”We must not label people” I have been told.
Who will count these?
Who will count those in prison?
Who will count those in other Institutions?
Who will count those who choose to live with little contact with others?
Who will count those walking the street?
I suspect there a lot more people out there than will be counted.