Revealed: ‘invisible’ adults living with autism Call for support for Scots with ‘lifelong condition’ MORE THAN half of adults with autism in Scotland do not get enough support and thousands struggle through life feeling isolated and ignored.
The largest-ever survey into the experiences of adults with autism has revealed that many have to battle to access services and are often completely dependent on their families.
According to the National Autistic Society (NAS) Scotland report, due to be launched this week, 52% of adults have not had an assessment of their needs since the age of 18, just over one in 10 adults with autism is in full-time employment and more than half reported being bullied or harassed.
It is estimated that more than 35,000 adults in Scotland have the condition, but campaigners said they were "invisible" to local authorities, who are failing to record the number of people with autism in their area. The NAS's Exist campaign is the first major initiative to focus on the needs of adult with the disability.
Joanna Daly, policy and parliamentary officer for NAS Scotland, said one difficulty was that many people thought of autism as a childhood condition.
"A lot of people don't understand it is a lifelong condition, and this report is calling for adults with autism to be recognised," she said.
Daly added that many older adults had grown up when knowledge of autism was in its infancy and were only now being diagnosed.
"They have really just struggled through life ... a lot of the time they have relied on their families for support and are getting to a stage now where that support may not always be there for them," she said. "These adults need to be supported to make a smooth transition to a more independent life."
Issues in the report include limited access to diagnosis, with 56% of those surveyed saying they found it hard to get their condition recognised. One adult said: "The GP did nothing. She didn't see any point in diagnosis for an adult."
But even after diagnosis many say they do not get the support they need. One participant in the survey commented: "I have had little or no support ever - my mother has done everything."
Daly said the services most adults wanted were social groups, social skills training and befriending. These could open up opportunities for education, employment and the chance to be involved in the community, "because many adults with autism tell us they are completely isolated and ignored".
Bill Welsh, president of the Edinburgh-based Autism Treatment Trust, said the plight of many adults with autism had been "swept under the carpet", yet one child in 100 in the UK was diagnosed with the condition and the cost to society for each autistic child was estimated at £4 million. He added: "A major social, health and financial problem is upon us and urgent action is required."
Public health minister Shona Robison said the government had funded local and national projects aimed at improving services for people with autism.
"We are developing guidance for commissioners of health and social care services for people with autistic spectrum disorder, which will address the need for appropriate and responsive services."
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Posted by: Fiona Sinclair, Ayrshire on 12:11am Sun 24 Feb 08
Autism Rights has published its `Proposals for Autism Services in Scotland` on its website ( www.autismrights.org
.uk ), and is inviting people with an Autistic Spectrum Disorder (ASD), their parents and other carers to contact the group with their views on specific services such as school and further education, healthcare, social services, housing and employment.
The proposals are published online at:-
http://www.autismrig
hts.org.uk/AutismRig
htsProposals.html
Autism Rights welcomes all comments on the separate services available to people with an ASD, whether good, bad or indifferent. We will treat all such
contributions in confidence.
We are putting forward a basic set of proposals for all services for people with an Autistic Spectrum Disorder in Scotland. We want to canvass the views
of as many service users as possible, in order to compile further and more specific proposals on each service area. We have almost completed our
proposals on school education, which have largely been informed by the responses to our questionnaire, to which more than 150 responses have been received so far. We are particularly concerned that, since the precipitate and irregular closure of the Scottish Parliament's Cross Party Group on Autistic Spectrum Disorder, the last direct link between service users and policy makers has been severed, and that policy is failing to take account of the first-hand and detailed knowledge of service users.
We are emailing all MSPs with our Proposals, and we will be submitting them to the Scottish Government. We are compiling all of these proposals as part of an ongoing campaign to try to make the kind of
improvements to services for people with ASD in Scotland that service users know are needed. As the only national group in Scotland campaigning for the
rights of people with an Autistic Spectrum Disorder and their families that is led by service users, Autism Rights is best placed to lead such a campaign.
Comments should be emailed to proposals@autismrigh
ts.org.uk . In addition,
parents of school age children may wish to complete a questionnaire on school education which is also available to complete online via our website.
Autism Rights has published its `Proposals for Autism Services in Scotland` on its website ( www.autismrights.org
.uk ), and is inviting people with an Autistic Spectrum Disorder (ASD), their parents and other carers to contact the group with their views on specific services such as school and further education, healthcare, social services, housing and employment.
The proposals are published online at:-
http://www.autismrig
hts.org.uk/AutismRig
htsProposals.html
Autism Rights welcomes all comments on the separate services available to people with an ASD, whether good, bad or indifferent. We will treat all such
contributions in confidence.
We are putting forward a basic set of proposals for all services for people with an Autistic Spectrum Disorder in Scotland. We want to canvass the views
of as many service users as possible, in order to compile further and more specific proposals on each service area. We have almost completed our
proposals on school education, which have largely been informed by the responses to our questionnaire, to which more than 150 responses have been received so far. We are particularly concerned that, since the precipitate and irregular closure of the Scottish Parliament's Cross Party Group on Autistic Spectrum Disorder, the last direct link between service users and policy makers has been severed, and that policy is failing to take account of the first-hand and detailed knowledge of service users.
We are emailing all MSPs with our Proposals, and we will be submitting them to the Scottish Government. We are compiling all of these proposals as part of an ongoing campaign to try to make the kind of
improvements to services for people with ASD in Scotland that service users know are needed. As the only national group in Scotland campaigning for the
rights of people with an Autistic Spectrum Disorder and their families that is led by service users, Autism Rights is best placed to lead such a campaign.
Comments should be emailed to proposals@autismrigh
ts.org.uk . In addition,
parents of school age children may wish to complete a questionnaire on school education which is also available to complete online via our website.
Posted by: Martin Barrett, Leeds on 3:31am Sun 24 Feb 08
Do they include people with high-functioning Asperger's? It's so hard to figure out who they are talking about if they just use the huge blanket term 'autism'. One might suspect they are using it because it seems to them the most emotive way to raise donations and funding. Certainly the banner ads they're running on the Times send all the wrong messages - it looks like the person shown is mad and in a padded cell!
Do they include people with high-functioning Asperger's? It's so hard to figure out who they are talking about if they just use the huge blanket term 'autism'. One might suspect they are using it because it seems to them the most emotive way to raise donations and funding. Certainly the banner ads they're running on the Times send all the wrong messages - it looks like the person shown is mad and in a padded cell!
Posted by: John Stone, N.London on 1:42pm Sun 24 Feb 08
There are two issues here: one is the failure to provide support for ASD adults - the other is how many may be missing. It looks as if the 35,000 figure is based either on the 1 in 100 figure produced by National Statistics for births between 1988 and 1999 (and therefore a different group), or the projection of 92 in 10,000 based by Gillberg and Wing based on separate studies conducted in Camberwell in the mid 1970s and Gothenburg in the early 90s: which presupposes constant incidence across time and geography.
The reality down here is that our adult services are perplexed at suddenly having to meet the needs of young adults in unprecendented quantites, without any explanation. I am sure that there are lost and neglected cases amongst the older population but it is an open question whether they exist in such numbers. ASD creates highly intractable problems which it is hard to hide, even if you depend on an aging population of parents to make up the shortfall in services.
There are two issues here: one is the failure to provide support for ASD adults - the other is how many may be missing. It looks as if the 35,000 figure is based either on the 1 in 100 figure produced by National Statistics for births between 1988 and 1999 (and therefore a different group), or the projection of 92 in 10,000 based by Gillberg and Wing based on separate studies conducted in Camberwell in the mid 1970s and Gothenburg in the early 90s: which presupposes constant incidence across time and geography.
The reality down here is that our adult services are perplexed at suddenly having to meet the needs of young adults in unprecendented quantites, without any explanation. I am sure that there are lost and neglected cases amongst the older population but it is an open question whether they exist in such numbers. ASD creates highly intractable problems which it is hard to hide, even if you depend on an aging population of parents to make up the shortfall in services.
Posted by: John Stone, N.London on 1:58pm Sun 24 Feb 08
From the Scottish Daily Mail two years ago (1 March 2006 - not on line):
"Number of sufferers has more than quadrupled in only seven years"
"By Graham Grant, Home Affairs editor, Scottish Daily Mail, Wednesday March 1, 2006 (Not on-line)
"The true scale of childhood autism was revealed yesterday as official figures showed an explosion in the number of cases.Last year, 3,484 schoolchildren in Scotland were registered as autistic compared to only 820 in 1998. In 2002, the figure was 2,204.
The statistics lay bare the rise of the brain disorder, which affects children’s ability to learn and communicate.They also raised further questions over the safety of the MMR triple vaccine.It combats measles, mumps and rubella and has been linked by some experts to the increased incidence of autism in young children. The vaccine has been boycotted by many parents, who fear the jab could cause irreversible damage to their children’s brains – despite ministers’ repeated claims that it is safe.
"Campaigners said Scotland was in the grip of an autism epidemic and called for more research to probe the link between MMR and ‘autism spectrum disorder’.The figures showed many more boys (2,998) than girls (486) are affected. There were 1,736 cases in primary schools, 825 in secondaries and 923 in special schools.The bleak picture of childhood autism emerged in a ‘pupil census’ by Scottish Executive researchers.
"Last night, ministers sought to explain the rise in autism by citing greater awareness of the condition and more accurate diagnoses than ever before.But campaigners accused the Executive of failing to carry out enough research into the condition and its possible links with MMR, which has contributed to a fall in take-up rates of the triple jab.
Figures suggest the Scottish take-up rate is 88 percent, far short of the official target of 95 percent.The low take-up has been liked with a surge in mumps cases in recent years.
Last night, Bill Welsh of Action Against Autism said: ‘Scotland is in the grip of a huge autism epidemic. It seems ministers want to talk about every imaginable issue affecting children other than autism. In 1990, it would have been rare for a doctor to see a single case of autism in his career but that is no longer the case’.
"‘The Executive is simply not investigating why this has happened because it doesn’t want to jeopardise immunisation. This refusal to do more for the plight of these children is the most shameful episode in Scottish public health history.’
"‘The fact is that MMR jabs are deeply implicated in what is happening to a proportion of these children.’
"Yesterday’s figures came after Tory leader David Cameron reignited the row over MMR by demanding that single vaccines be made available on the NHS.Mr Cameron said his new-born son Arthur would be given the triple jab and that his other children, Nancy, two, and three year old Ivan, who is disabled had already had it.But he added: ‘Where parents insist that their children won’t have the MMR vaccine, it’s wrong for the Government to rule out completely the possibility of giving them a single vaccine on the NHS – especially if the vaccination rates continue to fall.’His comments intensified the pressure on Tony Blair to reveal if his five year old son Leo has had the triple jab.
"The Prime Minister has been accused of contributing to public uncertainty by refusing to say where he has or not.Chancellor Gordon Brown recently made it clear his two year old son, John has had it.
"Last night, an Executive spokesman attempted to play down fears of an autism epidemic caused by the triple vaccine.
"She said: ‘The rise in cases can be explained by better identification and awareness of the issues surrounding autism.’"
My own comment at the time was:
"Re: "Better identification and awareness"
"Not only is there no evidence ever presented for this (as by the spokeswoman for the Scottish executive), there are also overwhelming reasons why this is a fanciful claim.
"I first became exercised by this issue back in 1999 when I was still by no means hooked by the vaccine dimension. A Haringey report on SEN identified that approximately 19% of statements at infant level were issued for autism as compared with 2% at secondary level - allowing that there were more statements overall at secondary level this represented a 6-7 fold rise in autism incidence between those born before 1986-7 and those born after 1991-2. Even if there had been a change in pattern of diagnosis it would have been beyond comprehension how more than 80 children at secondary level with a statementable level of autism could have gone undetected despite the crippling and disruptive nature of the disorder, and despite the fact that they were being monitored by the same services.
"We have now reached the historical juncture at which all the children who were in primary education in 1998 are now in secondary education, and this is what is reflected in the present Scottish four-fold rise. The interesting question is the one I was beginning to formulate for myself back in 1999-2000, which is why was it that the authorities when challenged over the rise in autism resorted to an explanation that did not begin to work.
"Meanwhile, all these years later the epidemic rages on and we do not even have figures for the rest of the United Kingdom."
http://www.jabs.org.
uk/forum/topic.asp?T
OPIC_ID=105
From the Scottish Daily Mail two years ago (1 March 2006 - not on line):
"Number of sufferers has more than quadrupled in only seven years"
"By Graham Grant, Home Affairs editor, Scottish Daily Mail, Wednesday March 1, 2006 (Not on-line)
"The true scale of childhood autism was revealed yesterday as official figures showed an explosion in the number of cases.Last year, 3,484 schoolchildren in Scotland were registered as autistic compared to only 820 in 1998. In 2002, the figure was 2,204.
The statistics lay bare the rise of the brain disorder, which affects children’s ability to learn and communicate.They also raised further questions over the safety of the MMR triple vaccine.It combats measles, mumps and rubella and has been linked by some experts to the increased incidence of autism in young children. The vaccine has been boycotted by many parents, who fear the jab could cause irreversible damage to their children’s brains – despite ministers’ repeated claims that it is safe.
"Campaigners said Scotland was in the grip of an autism epidemic and called for more research to probe the link between MMR and ‘autism spectrum disorder’.The figures showed many more boys (2,998) than girls (486) are affected. There were 1,736 cases in primary schools, 825 in secondaries and 923 in special schools.The bleak picture of childhood autism emerged in a ‘pupil census’ by Scottish Executive researchers.
"Last night, ministers sought to explain the rise in autism by citing greater awareness of the condition and more accurate diagnoses than ever before.But campaigners accused the Executive of failing to carry out enough research into the condition and its possible links with MMR, which has contributed to a fall in take-up rates of the triple jab.
Figures suggest the Scottish take-up rate is 88 percent, far short of the official target of 95 percent.The low take-up has been liked with a surge in mumps cases in recent years.
Last night, Bill Welsh of Action Against Autism said: ‘Scotland is in the grip of a huge autism epidemic. It seems ministers want to talk about every imaginable issue affecting children other than autism. In 1990, it would have been rare for a doctor to see a single case of autism in his career but that is no longer the case’.
"‘The Executive is simply not investigating why this has happened because it doesn’t want to jeopardise immunisation. This refusal to do more for the plight of these children is the most shameful episode in Scottish public health history.’
"‘The fact is that MMR jabs are deeply implicated in what is happening to a proportion of these children.’
"Yesterday’s figures came after Tory leader David Cameron reignited the row over MMR by demanding that single vaccines be made available on the NHS.Mr Cameron said his new-born son Arthur would be given the triple jab and that his other children, Nancy, two, and three year old Ivan, who is disabled had already had it.But he added: ‘Where parents insist that their children won’t have the MMR vaccine, it’s wrong for the Government to rule out completely the possibility of giving them a single vaccine on the NHS – especially if the vaccination rates continue to fall.’His comments intensified the pressure on Tony Blair to reveal if his five year old son Leo has had the triple jab.
"The Prime Minister has been accused of contributing to public uncertainty by refusing to say where he has or not.Chancellor Gordon Brown recently made it clear his two year old son, John has had it.
"Last night, an Executive spokesman attempted to play down fears of an autism epidemic caused by the triple vaccine.
"She said: ‘The rise in cases can be explained by better identification and awareness of the issues surrounding autism.’"
My own comment at the time was:
"Re: "Better identification and awareness"
"Not only is there no evidence ever presented for this (as by the spokeswoman for the Scottish executive), there are also overwhelming reasons why this is a fanciful claim.
"I first became exercised by this issue back in 1999 when I was still by no means hooked by the vaccine dimension. A Haringey report on SEN identified that approximately 19% of statements at infant level were issued for autism as compared with 2% at secondary level - allowing that there were more statements overall at secondary level this represented a 6-7 fold rise in autism incidence between those born before 1986-7 and those born after 1991-2. Even if there had been a change in pattern of diagnosis it would have been beyond comprehension how more than 80 children at secondary level with a statementable level of autism could have gone undetected despite the crippling and disruptive nature of the disorder, and despite the fact that they were being monitored by the same services.
"We have now reached the historical juncture at which all the children who were in primary education in 1998 are now in secondary education, and this is what is reflected in the present Scottish four-fold rise. The interesting question is the one I was beginning to formulate for myself back in 1999-2000, which is why was it that the authorities when challenged over the rise in autism resorted to an explanation that did not begin to work.
"Meanwhile, all these years later the epidemic rages on and we do not even have figures for the rest of the United Kingdom."
http://www.jabs.org.
uk/forum/topic.asp?T
OPIC_ID=105
Posted by: David, Ireland on 1:59am Mon 25 Feb 08
I'm a scientist who has Asperger's syndrome (mild autism) - I was diagnosed in 2002. The apparent increase in ASDs is entirely due to the widening of diagnostic criteria not MMR, as demonstrated by me being able to type this response. People who are obsessed with MMR vaccine have an undiagnosed ASD (70-90% of ASDs are genetic)- one of the 3 diagnostic traits of an ASD is a narrow obsessive interest. You don't find parents of ADHD kids claim that ADHD is caused by the MMR, those parents don't get obsessed with things.
I'm a scientist who has Asperger's syndrome (mild autism) - I was diagnosed in 2002. The apparent increase in ASDs is entirely due to the widening of diagnostic criteria not MMR, as demonstrated by me being able to type this response. People who are obsessed with MMR vaccine have an undiagnosed ASD (70-90% of ASDs are genetic)- one of the 3 diagnostic traits of an ASD is a narrow obsessive interest. You don't find parents of ADHD kids claim that ADHD is caused by the MMR, those parents don't get obsessed with things.
Posted by: John Stone, N.London on 9:27pm Mon 25 Feb 08
"I'm a scientist who has Asperger's syndrome (mild autism) - I was diagnosed in 2002. The apparent increase in ASDs is entirely due to the widening of diagnostic criteria not MMR, as demonstrated by me being able to type this response. People who are obsessed with MMR vaccine have an undiagnosed ASD (70-90% of ASDs are genetic)- one of the 3 diagnostic traits of an ASD is a narrow obsessive interest. You don't find parents of ADHD kids claim that ADHD is caused by the MMR, those parents don't get obsessed with things."
David, I am not sure how you determine what percentage of ASD cases are genetic, nor is anyone arguing that the rise is purely related to MMR. Parents are however fed up with having the adverse reactions of their children to vaccine ignored (and not only MMR). I do not think there is much evidence of the diagnosed incidence being related to widening criteria - the psychiatric profession would have more to point to in the changes to their own practice than they do. I draw your attention to this study which argues just such a case in the face of escalating diagnosis but which fail to provide any evidence for it:
http://adc.bmj.com/c
gi/content/full/88/8
/666
As you will see I wrote to the journal twice pointing out problems with this study, the second time with evidence that the authors had deliberately failed to take into account of the introduction of the accelerated DPT schedule in 1990, which included 75 micrograms of mercury.
http://adc.bmj.com/c
gi/content/full/88/8
/666
Note also that this study excludes Asperger Syndrome - cases therefore which would have had, at least, to have had different diagnoses in the past, rather than no diagnosis. I have to admit though I am extremely sceptical about that.
Secondly, you would be incorrect in believing that there has been no attempt to link vaccines with other neurological disorders. The Generation Rescue survey last year carried out in California and Oregon found heavy correlation between vaccination and a range of disorders, and heavier correlation between vaccine and ADHD than autism (though autism was still more than two and half times more likely to occur in the vaccinated than the unvaccinated). This, admittedly, cannot account for the entire rise in autism, but it would be necessary to look at other environmental features of the past two decades as well as better recognition.
http://www.generatio
nrescue.org/survey.h
tml
The real problem is that we have to look at all the possible influences, and none of the possibilities will I am afraid be popular with governments or industry.
"I'm a scientist who has Asperger's syndrome (mild autism) - I was diagnosed in 2002. The apparent increase in ASDs is entirely due to the widening of diagnostic criteria not MMR, as demonstrated by me being able to type this response. People who are obsessed with MMR vaccine have an undiagnosed ASD (70-90% of ASDs are genetic)- one of the 3 diagnostic traits of an ASD is a narrow obsessive interest. You don't find parents of ADHD kids claim that ADHD is caused by the MMR, those parents don't get obsessed with things."
David, I am not sure how you determine what percentage of ASD cases are genetic, nor is anyone arguing that the rise is purely related to MMR. Parents are however fed up with having the adverse reactions of their children to vaccine ignored (and not only MMR). I do not think there is much evidence of the diagnosed incidence being related to widening criteria - the psychiatric profession would have more to point to in the changes to their own practice than they do. I draw your attention to this study which argues just such a case in the face of escalating diagnosis but which fail to provide any evidence for it:
http://adc.bmj.com/c
gi/content/full/88/8
/666
As you will see I wrote to the journal twice pointing out problems with this study, the second time with evidence that the authors had deliberately failed to take into account of the introduction of the accelerated DPT schedule in 1990, which included 75 micrograms of mercury.
http://adc.bmj.com/c
gi/content/full/88/8
/666
Note also that this study excludes Asperger Syndrome - cases therefore which would have had, at least, to have had different diagnoses in the past, rather than no diagnosis. I have to admit though I am extremely sceptical about that.
Secondly, you would be incorrect in believing that there has been no attempt to link vaccines with other neurological disorders. The Generation Rescue survey last year carried out in California and Oregon found heavy correlation between vaccination and a range of disorders, and heavier correlation between vaccine and ADHD than autism (though autism was still more than two and half times more likely to occur in the vaccinated than the unvaccinated). This, admittedly, cannot account for the entire rise in autism, but it would be necessary to look at other environmental features of the past two decades as well as better recognition.
http://www.generatio
nrescue.org/survey.h
tml
The real problem is that we have to look at all the possible influences, and none of the possibilities will I am afraid be popular with governments or industry.
Posted by: susan, Edinburgh on 10:42pm Mon 10 Mar 08
The article is about adults and the lack of services. It is easy to become sidetracked into the causes and how to prevent further cases. The answers will take many years of research to resolve meanwhile there are thousands of families living with a family member with autism without adequate support. The last scottish government administration did not sign the European charter of human rights for people with autism. Let us hope we can now sign the charter and demonstrate a more resposible attitude to people with autism and provide the support they require.
The article is about adults and the lack of services. It is easy to become sidetracked into the causes and how to prevent further cases. The answers will take many years of research to resolve meanwhile there are thousands of families living with a family member with autism without adequate support. The last scottish government administration did not sign the European charter of human rights for people with autism. Let us hope we can now sign the charter and demonstrate a more resposible attitude to people with autism and provide the support they require.
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