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Bob Wright snubs autistic adults, the same group who live in poverty

23 Nov

The New York Post reported on Autism Speaks founder Bob Wright having a grumpy slap at adult autistic people who were protesting the fact that Autism Speaks still has no autistic representation on its Board.

Bob Wright had harsh words for protesters who tried to muck up the A-list benefit concert he put on at Carnegie Hall on behalf of autistic kids.

“The protesters are lucky,” said Wright. “They’re well off enough, healthy enough, to do it. I wish my grandson were able to join them.”

Wright runs Autism Speaks, which has raised over $200 million for research into a disorder that afflicts mainly children.

That didn’t stop a clutch of sign-carrying adult protesters from descending on Carnegie Hall Tuesday night, trying to disrupt a concert attended by Donald Trump, Howard Stern and Martha Stewart. Protesters complain that there’s not one autistic person on the board of the org, which produced an “offensive” ad suggesting that autism was a fate worse than death.

Wright, whose grandson cannot talk because of autism, said the disorder is exploding among young kids who can’t speak for themselves.

“This is serious business,” he said.

Note how the reporter states that the benefit was for autistic kids and further states that autism affects mainly children. This should give some insight into the silly one dimensional world that the Wrights, and by extension, Autism Speaks inhabit. Of course autism doesn’t affect mainly children. In fact, it would seem that the reverse is true.

I would like to suggest to Bobo that what is serious business is blindly misrepresenting autism either purposefully or (more likely) out of ignorance. I would also like to suggest that its about time Autism Speaks walked the walk and got aome autistic Board level members. I would further suggest that Bobo wakes up and smells the coffee. Young autistic kids definitely find it difficult to talk for themselves. Most kids of his grandsons age might find it difficult to form coherent opinions on high level concepts like the right to be who you are. In the meantime, having an autistic Board level member would be a step in the right direction. I’d happily accept Jake Crosby or Jon Mitchell. Two men who I vehemntly disagree with yet who’s opinion on autism I respect due to their diagnosis.

Maybe Bobo might take a look across the pond if his cheeks aren’t still smarting from the slapdown he got last time he came over here. Maybe the reality of life for autistic adults over here might cause him to get a bit of a reality check as to where his research priorities should lie. As he continues to steer Autism Speaks down the increasingly stupid looking anti-vaxx hypotheses,

A THIRD of Wales’ autism sufferers are unemployed and living in ‘poverty’ without benefits, a charity has said.

9,000 autistic adults are surviving (sort of) on handouts from friends and family. Not only are they subject to ignorance in job centres, they are not made aware of _how_ to make a claim:

She [Shirley Parsley] said: “It is scandalous, therefore, that thousands of people with this serious, lifelong and disabling condition are being consigned to poverty by a complex and counter-productive benefits system.”

This is the reality of life for autistic adults. Abandoned by a state system and also abandoned by Autism Speaks, an organisation focussed solely it seems on people of Bob Wright’s grandchilds age. Whilst Bobo complains about how autism is ‘exploding amongst kids who can’t talk for themselves’ (a factoid for which there’s no valid science), the adults he and his organisation turn their backs on are literally starving.

Don’t Write Me Off

13 Oct

This is the slogan of the latest campaign from the National Autistic Society. It launched today at a reception in Parliament where over100 MPs heard NAS Council member Thomas Madar talk about his experience as an autistic adult and saw the latest campaign video.

The campaign addresses the lack of support adults with autism face when looking for a job or trying to access benefits. New NAS research has revealed that, of the adults with autism we surveyed:

· One third are currently without a job or access to benefits

· Over half have spent time with neither a job nor access to benefits, some for over ten years

· Just 15% have a full-time job

· 79% of those on Incapacity Benefit want to work

· 82% who have applied for benefits say that they needed support to apply.

As with previous campaigns these statistics will be brought to life with the personal stories of adults and parents directly affected by these issues. For news, resources and to take part in the campaign visit the campaign website

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1 in 100 adults are autistic

30 Sep

A recent report by the Information Centre of the UK’s National Health Service says that the autism prevalence for adults is about 1 in 100.

The report, Autism Spectrum Disorders in adults living in households throughout England, states:

Using this recommended threshold score on the ADOS, 1.0%of the adult population had ASD. The rate was higher in men (1.8%) than women (0.2%), which fits with the profile found in childhood population studies.

This isn’t very new news, Anthony Cox and Kev Leitch on this blog have already discussed this.

I would suggest that the first reaction from pretty much everyone (including myself) was wrong.

What should the take-away message be from this?

Simple–there are a lot of unidentified adult autistics who are likely getting little, no, or inappropriate support.

From the report:

“Perhaps most important of all is the finding that adults with ASD are socially disadvantaged, less well educationally qualified, less able intellectually and possibly under-supported by services. Much of this could be alleviated with greater involvement of existing established social, educational, welfare and health care services.

Another point that really sticks out to me is:

There was no indication of any increased use of treatment or services for mental or emotional problems among people with ASD.

We don’t know if this is because they don’t need more services or they just aren’t getting them.

Two more statistics are also worth pointing out: 4.5% of unmarried male adults are identified as ASD. 8% of male adults in social housing are identified as ASD.

That’s huge. Imagine walking through a specific housing complex and 1 in 12 men you see are autistic.

Now that I am done lecturing everyone (including myself) about what I think the important message is from this report, let’s take a look at the report itself. Specifically, let’s consider the complaints that are being levied against it.

The first thing that struck me is that this is a report, not a published study. It is not, to my knowledge, peer reviewed in the same sense as a journal article. It is in the same class as the MMWR reports that the CDC puts out (a government report) that are used by almost everyone to discuss the prevalence of autism. So, if you use 1 in 150 or 1 in 166 prevalence numbers, don’t complain about this UK report being non-peer reviewed.

People are complaining about how the study was conducted. Here is the basic process:

A. Phase one AQ-20 self-completion screen
B. Selection of cases for phase two assessment
C. Phase two ADOS assessment of a subset of cases
D. Weighting to adjust for selection probabilities and non-response.

This was not worded well, since many people assume that the phase one screen only used the AQ-20. As I will discuss below, this is not the case.

The initial screen started by identifying addresses that were residences, and selecting some by random selection. They selected 13,171 possible households for phase-1. Of these, 57% agreed to respond.

9% of sampled addresses were ineligible because they contained no private households, while 4%were addresses of unknown eligibility (see Section 3.2.5). This left an estimated base of 13,171 known eligible or probable eligible households for the phase one interview. The proportion of selected adults who agreed to take part in an initial interview is shown in Figure 3B. At the phase one interview, 57% of those eligible agreed to take part in an interview. This included 50 partial interviews where the respondent completed the service use and CIS-R modules, but did not reach the end of the interview.

These interviews were not just the AQ-20 screen, as noted below:

The phase one interviews were carried out by NatCen interviewers. These included structured assessments and screening instruments for mental disorders, as well as questions about other topics, such as general health, service use, risk factors and demographics. These interviews lasted about 90 minutes on average.

90 minutes per interview, with 7,353 full interviews works out to 5.3 man-years of labor.

This was no small effort.

Many complaints I have seen concentrate on the AQ-20 test. The full AQ test, or Autism Quotient, is a product of the Cambridge Autism Research Centre, and has been studied already. It is usually a 50 question test, but it was shortened to 20 questions (hence AQ20) and adapted for the NHS survey. They shortened the AQ to save time.

Many people have been confused that this short questionnaire was the method used to make the autism diagnoses. People pull questions out and question whether they could be used to diagnose autism. The AQ20 wasn’t used to make the diagnoses. It was only a part of the phase-one, pre-screen, part of the study. The diagnoses were made using the ADOS.

They used the information from phase 1 to select a smaller subgroup for the more intensive phase-2 part of the study. Amongst this smaller group, the researchers chose people they thought were more likely to have psychosis, Asperger syndrome or personality disorder.

7461 respondents provided a productive phase one interview. Of these 58 were proxy respondents and therefore not eligible for the phase two interview (see Figure 3E). A probability of selection was calculated for each respondent based on their answers to the phase one screening questions on psychosis, Asperger syndrome, and personality disorder: as outlined in Section 3.2.6. 5,329 respondents had a probability of selection of greater than zero: 4050 of these also agreed to be recontacted for a phase two interview (76%). After the application of the highest of the four disorder specific sampling fractions, 849 respondents were selected for a phase two interview. Phase two interviews were conducted with 630 of these (74%).

618 of the 630 people who underwent the phase-2 interviews were given the ADOS test. A score of 10 on the ADOS was chosen to indicate a diagnosis of an ASD. Of these, 19 scored above 10 on the test and were diagnosed as having an ASD.

If one took these data to calculate a crude prevalence, a value of 19/618 or about 3% (1 in 32) would be obtained. No one is saying this is an accurate estimate, but it is worth noting for this reason: quite obviously, the phase-1 screen was successful in finding a larger number of autistics than

These data were weighted to estimate a prevalence for the overall study group, including non-responders. They came up with a prevalence of 1% (1.8% for males 0.2% for females).

Here are some of the complaints I have read about this report:

1) They define adult with ages as young as 16.

this is supposed to be a sign that they are trying to fudge the data by including people who are really part of the so-called “epidemic”.

Well, the UK Census defines adults as people age 16 and over. If including 16 and 17 year olds were a problem, one would expect the younger age category to have a much higher prevalence. It doesn’t.

age group 16-44: prevalence 1.1%
age group 45-74: prevalence 0.9%
age group 75+: prevalence 0.8%

(from table 2B)

Another complaint is that there were no ethnic or racial minorities in the group of 19 identified autistics. This is a good check for internal consistency, but it isn’t a valuable check in this case.

The UK has about 90% white population. They tested 618 individuals with the ADOS. If the selection were random in ethnicity, they would have 61 minority participants. A 1% autism rate would lead us to expect 0.6 ethnic minority autistics.

People have complained that the study only shows adults in residential housing. I.e. they didn’t check institutions.

The report is very clear about this (it is even in the title). They note:

The sample for APMS 2007 was designed to be representative of the population living in private households (that is, people not living in communal establishments) in England. People living in institutions are more likely than those living in private households to have ASD, however this group was not covered in the survey reported on here and this should be borne in mind when considering the survey’s account. At the time of the 2001 Census, 2% of the English population aged 16 years or over were resident in a communal establishment.

So, yes, by leaving out those in institutions they didn’t measure the prevalence in the total UK population. That is a limitation of this report. The prevalence in the institutions is very likely to be higher than in residential settings. I.e. they would have found more autistics had they look in institutions and they would have found a higher prevalence overall.

One complaint is that they only identified 19 adult autistics in phase two. This is definitely worth considering as that puts some big error bars on the results. This becomes especially when they try to break the results down by age, gender, or other category.

It has been proposed that one can’t extrapolate from the 19.

But, just for fun, let’s make the assumption that the 19 adult autistics ID’d in phase 2 group (of about 618) are all there would be in the entire group studied (7353).

That would give a prevalence of 25 per 10,000.

This is much higher than people have been claiming the prevalence should be amongst adults. Many people claim the prevalence rate for adults should be about 1 in 10,0000 or 3.3 in 10,000.

To put it simply, those claiming there is an epidemic of autism are off by at least a factor of 7.

Or, to put it another way,

It isn’t a question of whether there are factors such as widening of the criteria or diagnositic substitution/accretion that have caused some of the rise in the autism “rates”. The question is what factors have been in play and how big of an effect did they have.

Another criticism I have seen is that the male:female ratio is quite high, 18:1, as opposed to the 3:1 or 4:1 found in most studies. They found 19 autistics. A 3:1 male:female ratio would lead us to expect 5 females. I’ll let the statisticians tell me if this is significant, but they did find fewer women than I would expect. The report notes repeatedly that the small number of women limits the analysis.

I have been told in the comments on this blog that the study was done cheaply. I wouldn’t be surprised. However, it does represent a significant effort. I am impressed that anyone undertook to do a prevalence study on adults.

This isn’t a definitive or end-all study. Far from it. But it is a reasonable study and a very good start. I hope this is the beginning of a much greater effort to gather more information on adult autistics. It is pretty frightening to think that a very large segment of the autistic population could be undiagnosed and possibly receiving inappropriate supports.

Autism and adults

22 Sep

NHS National statistics have released a report entitled Autism Spectrum Disorders in adults living in households throughout England – report from the Adult Psychiatric Morbidity Survey 2007 . The key facts in this document that they list are:

  • Using the recommended threshold of a score of 10 or more on the Autism Diagnostic Observation Schedule, 1.0 per cent of the adult population had ASD. Published childhood population studies show the prevalence rate among children is also approximately 1.0 per cent.
  • The ASD prevalence rate was higher in men (1.8 per cent) than women (0.2 per cent). This fits with the gender profile found in childhood population studies.
  • There is no indication of any increased use of treatment or services for mental or emotional problems among adults with ASD. This is borne out by the recent National Audit Office publication “Supporting People with Autism Through Adulthood”.
  • A greater proportion of single people were assessed with ASD than people of other marital statuses combined. This was particularly evident among men.
  • Prevalence of ASD was associated with educational qualification, particularly among men. The rate for men was lowest among those with a degree level qualification and highest among those with no qualifications.

Understandably, the BBC have focused on an aspect not covered by these key points. The fact that the existence of a similar proportion of autistic adults to the proportion of children who are autistic undermines the idea that MMR vaccine has led to an increase in autism.

Latest autism figures should dispel any fears about the MMR jab being linked to the condition, say experts.

The NHS Information Centre found one in every hundred adults living in England has autism, which is identical to the rate in children.

If the vaccine was to blame, autism rates among children should be higher because the MMR has only been available since the early 1990s, the centre says.

Rather strangely the BBC provides a link on that news story to the JABS website, which continues to scaremonger about MMR and other vaccines. That editorial decision shows just how difficult it is going to be to ever disentangle vaccine conspiracy theories from autism.

Massachusetts General Hospital to add program on autistic adults

23 Aug

Massachusetts General Hospital (MGH) has received a $29 million grant to expand its pediatric autism program to a program that also gives comprehensive care to adults.

From the Boston Globe:

The hospital plans to announce Tuesday that it will receive $29 million, the fourth- largest gift in its history, from Nancy Lurie Marks and her family foundation in Wellesley, in part to add a major adult component to its pediatric autism program. The money will also allow the hospital to expand its services for children with autism, who now wait up to a year for an appointment, conduct extensive research, advocate for patients, and train physicians.

The Nancy Lurie Marks foundation describes itself as:

The primary mission of the Nancy Lurie Marks (NLM) Family Foundation is to help people with autism lead fulfilling and rewarding lives. The Foundation is committed to understanding autism from a scientific perspective, increasing opportunities and services available to the autism community and educating the public about autism.

The foundation was established in 1977.

This is a great step forward. As the story notes, autistics often stay with their pediatricians well into adulthood for lack of better options.

The Boston Globe quoted Peter Bell of Autism Speaks:

Bell said that while he knows of two autism clinics in the United States that treat adults, nothing “comes close to the kind of plan Mass. General is looking at. This is tremendously exciting, and I hope others will follow.’’

I agree. This is tremendously exciting and I hope others will follow.

Autism “is treated as a childhood disorder but it’s lifelong,’’ said Clarence Schutt, director of the Wellesley foundation, which is a leading funder of autism research and whose grant to Mass. General is its largest ever.

Autistic Rose Gardeners

19 Aug

This is the kind of news story I like to read: Program helps the jobless and people with autism.

This came out of some sadness: Connecticut’s last rose farm had to shut down do to competition from overseas. But, now they are reopening:

The renewed effort at the rose farm is the initial project of a new program called Growing Possibilities. The plan is to create a model that will show just how valuable those with developmental disabilities can be in the workforce.

The plan seems ambitious on multiple levels. Here’s another quote from the story:

“It’s kind of a marriage of people that want to work with an industry that has been facing challenges here,” said Thomas Fanning, president and chief executive of Ability Beyond Disability, a Bethel-based non-profit support agency Ability Beyond Disability is providing the funds to reopen the farm, and plans to raise $1.6 million to run it over the next two years, employing 15 people on the autism spectrum. The goal is to achieve profitability after two years and sustain it, Fanning said.

The organizations involved, the Connecticut Autism Spectrum Resource Center and Ability Beyond Disability appear pretty reasonable on a quick scan through their websites.

I really like to see more programs like this: programs involving adolescents and adults. We need more (much more) of this in our world.

Autistic Youth Coming of Age

13 Aug

Here’s what I call a good use of stimulus money in the US. Dr. Paul Shattuck of Washington University in St. Louis has a NIMH grant to study adolescents with diverse socioeconomic and racial backgrounds.

The study will focus on

Outlining changes in service needs, service use, and health insurance coverage as youths with ASD enter adulthood

Identifying resources and barriers associated with use of, and continuity in, health care and other services

Detailing young adult outcomes (such as employment, housing, independent living, health, and community participation) and examining how these may be linked with prior measures of need, service use, resources, and barriers.

This is the kind of study that can really help autistic adolescents and young adults.

This is the kind of study those of us with young children need to see.

By the way, I am only assuming the funding for this project came from the Stimulus package funding. Either way, it is a good research topic. I have a lot of respect for Dr. Shattuck at Washington University.

Autism research funding: who is paying and how much?

21 Jul

Ever wonder who is funding autism research and where the money is being spent? If you were watching/listening to the IACC meeting this week, you would have answers to a lot of these questions.

To answer the most basic question, the current annual expenditure on autism research in the U.S. is $225,000,000.

Most of us assume (and we are right) that in the US, the Government is the biggest source of research funding. But as it turns out, fully 35% of the research funding for autism in the U.S. is from private sources. That works out to over $78M in autism research funding is from private sources. Pretty impressive.

Anyone want to venture a guess as to who is the largest private source? Autism Speaks would be a good guess. It was mine. A.S. is a respectable second with $31M, but the number one private source of autism funding is the Simons Foundation, with $43M per year.

In case you want to see the entire breakdown of funding sources, here it is:

Autism Funding by Agency

Autism Funding by Agency

So, now we know where the money is coming from. The next question is “where is it going?” There are pages of detailed information on that in the research portfolio discussed at the IACC, but let’s take the summary view. In specific, NIH collated the research by category. They used the categories from the Strategic Plan:

I. When Should I Be Concerned?
II. How Can I Understand What Is Happening?
III. What Caused This To Happen And Can This Be Prevented?
IV. Which Treatments And Interventions Will Help?
V. Where Can I Turn For Services?
VI. What Does The Future Hold?

All of these categories are important and each of us will have a different view on the priorities. The issues I want to see get more funding involve figuring out how best to support autistics. In order to do so, I feel the research community has to fill a big gap in their knowledge when it comes to adult autistics.

Or, to put it in Strategic Plan categories, I think category V (where can I turn for services) and, mostly, VI (What does the future hold) need more attention and funding. As autism research funding grows, we should be expanding funding in these areas.

How is funding divided now? Well, here’s a pie chart:

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

Obviously the funding agencies don’t agree with me on priorities. Category V gets 1% of the funding, and category VI gets 5%.

Let’s put this another way: there are by some estimates roughly 1.5M autistics in the U.S. (I know that’s debated, but let’s go with it for a rough estimate). We are spending about $9M on understanding adults with autism. Roughly, $6 per autistic. Does that make sense?

Or, to put it another way, we have 300M people in the U.S.. Each of us is spending, what, $0.005 (one-half cent) a year on studying adults with autism? Surely we can do better than that.

It is worth stopping for a moment to acknowledge that the Strategic Plan is just getting started. The funding levels shown in the pie chart are going to change as the Plan is implemented. But, will research on adults be given high priority?

There are a lot of blog posts and news stories lately talking about how we as a society are not prepared for the “tidal wave” of autistics about to become adults. If that is your position, why not call for better research on adults? Why not call for the sorts of papers that will help you and your soon-to-be-adult children advocate for better services?

Joint Letter from Self-Advocacy Organizations to Secretary Sebelius

20 Jul

There has been a lot of online discussion about how Health Care reform will affect the autism communities. This has included a number or recent posts on this blog.

Much of the discussion here and elsewhere has focused on children and, especially, on ABA. There is a lot more to autism and a lot more to health care than just these subjects. Case in point, the letter below.

A number of self-advocacy groups have sent a joint letter to the secretary of the U.S. Department of Health and Human Services (Secretary Kathleen Sebelius). One of these groups is ASAN, the Autsitic Self-Advocacy Network.

(Edit) This is an effort to bring in issues from the Community Choice Act, which includes much that the CLASS act has left out. ASAN has an action alert on this. Please, take the time to sign the online petition.

This is something we all should be getting behind.

July 10, 2009 VIA Facsimile & E-Mail

The Honorable Kathleen Sebelius

Secretary

U.S. Department of Health & Human Services

200 Independence Avenue, SW

Washington, DC 20201

Dear Secretary Sebelius:

Thank you for your leadership this week in bringing the issue of Long Term Services and Supports back into the health care reform discussion by expressing support for including the Community Living Attendant Services and Supports (CLASS) Act in the health care reform legislation currently making its way through the Congress. As leaders of grassroots disability organizations, we write to request a meeting so that we can open up a line of communication with you and your team as health care reform takes center stage.

The disability community has advocated that reforming Long Term Services and Supports (LTSS) is a critical component of any health care reform initiative. As you know, adequate home and community services are not only preferred by seniors and people with disabilities, but also save money by avoiding serious secondary medical conditions, unnecessary trips to the emergency room, hospital stays and doctor visits. With your letter supporting inclusion of the CLASS Act, the administration has taken a first step in addressing this critical issue.

Although the CLASS Act would expand resources available to individuals and families to purchase LTSS to enable them to remain in their own homes in the community, this legislation does not:

* eliminate the institutional bias in the Medicaid program which forces Americans with disabilities and older Americans into nursing facilities and other institutions;

* meet the needs of seniors and people with disabilities who are already in nursing facilities or other institutions or who are at immediate risk of being forced into such a setting;
* address the needs of seniors and people with disabilities who will require LTSS but won’t qualify for the proposed benefit because they are not working;
* address the needs of persons who acquire disabilities earlier in life and won’t qualify because they cannot secure employment;

* provide any actual assistance for five years after it is enacted because people must contribute for five years before they can receive any benefit; or

* meet the needs of persons with significant disabilities who would require more assistance that would be provided under this benefit.

That’s why we need the Community Choice Act (S683/HR1670).

The Community Choice Act (CCA) would eliminate the institutional bias in Medicaid and give a real option for seniors and people with disabilities who want to live in the community with LTSS. It would address the needs of individuals who are at risk of institutional placement and give people who are already in such settings an opportunity to return to community living. CCA would provide immediate relief to Americans who are struggling with this issue, whether they were born with a disability, acquired one later in life, or are helping a family member. CCA provides a safety net for people with the most significant disabilities and allows people with incomes above the Medicaid level to buy into this program. Ultimately, the Community Choice Act brings federal LTSS policy in line with the Supreme Court’s Olmstead v. L.C. decision, giving every American with a disability the right to live in the most integrated setting.

We are writing to urge that the administration express its public support for including the Community Choice Act in the Affordable Health Choices Act. As a Presidential candidate and as a United States Senator, President Obama has expressed his support for and cosponsored the Community Choice Act. This legislation has a broad base of support within the aging and disability communities. In fact, over 80 national aging and disability organizations have endorsed this legislation.

We look forward to working with you to end the institutional bias so that every American is given a real choice in how and where they receive long term services and supports. We respectfully request a meeting with you this month to discuss how we can work together to accomplish our mutual goals.

Sincerely,

Bruce E. Darling

Organizer, ADAPT

Andrew J. Imparato

President and CEO, American Association of People with Disabilities

Ari Ne’eman

President, The Autistic Self Advocacy Network

Brenda Battat

Executive Director, Hearing Loss Association of America

Nancy J. Bloch

Chief Executive Officer, National Association of the Deaf

Kelly Buckland

Executive Director, National Council on Independent Living

Daniel B. Fisher, MD, PhD

Steering Committee Member, National Coalition of

Mental Health Consumer Survivor Organizations

Chester Finn,

President, Self Advocates Becoming Empowered

cc: Henry Claypool, Director, Office on Disability

Transition into adulthood – problems for autistics

20 Jun

The recent success of the Autism Bill is in part due to a decade of patient work by the All Party Parliamentary Group on Autism APPGA

is a formal cross-party backbench group of MPs and Peers who share an interest in autism and Asperger syndrome. It was set up in February 2000. Its role is to campaign in Parliament for greater awareness of autism and Asperger syndrome, and to lobby the Government for improved services for people with autism and Asperger syndrome, and their carers.

APPGA has just released an important report on Transition into Adulthood about that awkward period when young people with autism are coming to the end of their education and their parents are trying to obtain a package of suitable services to sustain them into adult life. The APPGA report lends support to the recent finding by the National Audit Office that services for autistic adults are in a parlous state. It should come as no surprise that the inadequacies of adult provision often result in an unsatisfactory transition.

At present all school children with a Statement of special educational need in England and Wales (there are parallel but differing arrangements in Scotland and Northern Ireland) are entitled to an annual review. At 14 years of age this becomes the Transition Review and it is the duty of the local authority to make arrangements for a smooth transition to adult services when the child leaves school. This works well enough for many pupils with severe learning difficulties who often stay at school until they are 19. Their transition to adult services comes at around the same time as they leave home and move to supported living in group homes or other residential settings and maybe employment or further education.

But most children leave school at 16 and adult services do not kick in until they are 18. Many children are left in limbo. Young people with autism, especially those without a Statement frequently lose out. If you have not got a Statement you do not get a transitional review. Even with a Statement things can still go wrong, especially for those in mainstream education. According to APPGA

Frequently, decisions about a young person’s next placement are made only when they are approaching the end of their schooling or, worse still, after they have left school. In the vast majority of cases where transition planning is taking place, it is happening without the involvement of adult social services. Contributors stressed how vital it is to address this. A recurrent theme was the mental health problems which developed, in part, as a result of these failures.

Other significant findings were that

  • Wrong expectations could derail the transition process. Low expectations became a self-fulfilling prophecy for some while unrealistic expectations placed on young people who lacked obvious cognitive impairments set them up to fail.
  • Inter-agency working could be a nightmare, especxially when no one agency took responsibility for leading the process.
  • Professionals lacked the necessary training in autism to inform their contribution to transition planning.
  • Parents and young people did not have adequate information about the available options.
  • Transition was often funding led. i.e it was a bureaucratic measure to allocate the budget and not a tool to identify the needs of young people.

    • APPGA’s recommendations will have no statutory power unless they are included in the statutory guidance that the government is planning to issue later this year. It is important that they make it into the guidance, especially as they independently reiterate many of the recommendations of the National Audit Office. So once more I urge readers in the UK to visit the NAS website and learn how you can contribute to the government consultation on adult services.

    Campaigning by the NAS and its allies is beginning to pay off after years of patient work offering detailed and practical ways forward for government and local councils to meet the challenge of autism. At last they are listening and seem to have the will to do something positive. Make sure you have your say and help to make it count.

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