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Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey

1 Feb

You may recall that a couple of years ago a study came out looking at the prevalence of autism in adults in the United Kingdom. They found a prevalence of about 1%, the same as in children.

There’s now a follow up study. The press release is below. The study can be found here. I hope to have the time to go into this in more detail in the next couple of days.

University of Leicester researchers lead on new autism study published today
Britain’s first adult autism survey reveals previously ‘invisible’ group with autism

New research on autism in adults has shown that adults with a more severe learning disability have a greater likelihood of having autism.

This group, mostly living in private households, was previously ‘invisible’ in estimates of autism.

Dr Terry Brugha, Professor of Psychiatry at the University of Leicester, led research on behalf of the University for the report Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey, which has today been published by the NHS Information Centre.

The report involved a survey of adults from learning disability registers in Leicestershire, Lambeth and Sheffield between August 2010 and April 2011.

Today’s report presents findings from a new study based on a sample of people with learning disabilities living in private households and communal care establishments. The findings are combined with information from the Adult Psychiatric Morbidity Survey (APMS) 2007, previously published by the NHS Information Centre, which included research on autism also led by Dr Brugha.

Dr Brugha, also a consultant psychiatrist working in the NHS with the Leicestershire Partnership NHS Trust, said: “We were surprised by how many adults with moderate to profound learning disability had autism because previous estimates pointed to lower rates in this group. Because they form a very small part of the adult population, when we added these new findings to the rate we had previously found in adults living in private households, and able to take part in our national survey in 2007, the overall percentage of adults in England with autism did not increase significantly over our 2007 estimate of 1%.”

“Our finding that about 60% of men with profound learning disabilities and 43% of women with profound learning disabilities have autism has never been shown previously. It may also seem surprising how many live at home with parents or carers who provide 24 hour care and shoulder a considerable burden: 42% of men and 29% of women with severe learning disabilities living with family members and in other private households have autism. Taken together with the 2007 survey findings this means that most adults with autism live in private households, and before these two surveys they remained largely invisible”.

Dr Brugha added “This new information will be of particular importance for those who plan and provide services to support those with learning disabilities. In March 2010, the Government published a national strategy for autism and guidance for the condition, with the view to improving the quality of services provided to adults with autism in England. Such improvements can only be achieved if the number of people with recognised and unrecognised autism is quantified. The strategy gave special emphasis to the need to train staff who have responsibility for identifying people with autism and their care. It will be vital to repeat such studies in future years in order to make sure that the national strategy is working effectively.”

Sally-Ann Cooper, Professor of Learning Disabilities at the University of Glasgow, who also contributed to the latest study commented: “Until now routine statistics have not been gathered on the numbers of people with learning disabilities who also have autism leaving this as a hidden problem. Our study clearly shows that the more severe to profound an adult’s learning disability is, the more likely they will be found to have autism if actually assessed.”

Los Angeles Times: Discovering Autism

23 Dec

The Los Angeles Times produced a series of articles called “Discovering Autism”. The series is in four parts and represents was researched for years. The articles are:

Autism boom: an epidemic of disease or of discovery?
Autism rates have increased twentyfold in a generation, stirring parents’ deepest fears and prompting a search for answers. But what if the upsurge is not what it appears to be?

Warrior parents fare best in securing autism services
Public spending on children with autism in California varies greatly by race and class. A major reason: Not all families have the means to battle for coveted assistance.

Families cling to hope of autism ‘recovery’
An autism treatment called applied behavior analysis, or ABA, has wide support and has grown into a profitable business. It has its limits, though, and there are gaps in the science.

Autism hidden in plain sight
As more children are diagnosed with autism, researchers are trying to find unrecognized cases of the disorder in adults. The search for the missing millions is just beginning.

The first article brought a great deal of criticism, from many quarters. As you can imagine challenging the way the “autism epidemic” is viewed is not welcomed by those promoting vaccines as a primary cause of autism. This article also brought out at least one commenter who asserted that the rise in autism diagnoses is driven by people seeking social security payments (SSI), which goes to show that readers tend to bring their own preconceptions to what they read.

Interest in the online discussion of the series dropped off dramatically after day one.

Autism boom: an epidemic of disease or of discovery? looked at the rise in autism diagnoses observed in many places. Writer Alan Zarembo points out quite rightly that autism rates vary dramatically by school district in California, as well as state to state.

Such variability of autism rates across geography speak strongly against the idea of a single cause, such as vaccines. Autism Diva wrote about the strong variation by regional center district within California years ago (her piece is not up, but this article from LBRB discusses her article)

The variation by school district and by race/ethnicity was a major factor in helping me see that the vaccine-epidemic of autism did not make sense, back when I first started to read up on autism.

The LA Times quotes Prof. Peter Bearman of Columbia University, who studied the California Department of Developmental Services data closely and showed, amongst other things, that a large autism “cluster” existed in Southern California. The Times notes that similar clusters were found by U.C. Davis Professor Irva Hertz-Picciotto. (I was present when Autism Diva discussed the regional center graph with Prof. Hertz-Picciotto, by the way).

Prof. Bearman also showed that social forces were at work–awareness, if you will–which has aided the increase in autism diagnoses.

In other words, autism is not contagious, but the diagnosis is.

“`Is it real or not?’ is a meaningless question,” Bearman said of the surge in cases. “The sociological processes are as real as the biological processes.”

A diagnostician (neurologist) is quoted in the Times:

Dr. Nancy Niparko, a child neurologist in Beverly Hills, said that whether she identifies a child as autistic can come down to whether she believes it will do any good.

“If it’s going to improve the possibility of getting services that will be helpful, I will give the label,” she said.

“I don’t work for labels. Labels work for me.”

In Warrior parents fare best in securing autism services makes the point that it takes work, hard work, to get the services that a child may need. An autism diagnosis is not a ticket to services, it is a first step. Parents who fight harder and longer tend to get higher levels of services for their children.

The Times points out that within a single district (albeit one of the largest in the U.S., Los Angeles Unified), the fraction of students with 1:1 aides varies by geography and race/ethnicity:

District officials acknowledge that advocacy efforts make a big difference in who gets services, but see things differently than parents on the value of 1:1 aides:

L.A. Unified officials offered a similar explanation for the disparity. As parents successfully lobbied for outside aides, the idea spread, and in certain schools it became standard practice to offer them.

“Parents learned from each other,” said Nancy Franklin, a top special education administrator. “It became a cottage industry in LAUSD.”

The district is trying to break the pattern by persuading parents that its own staff can meet children’s needs in many cases.

“We’re paying lots of money for services that are of questionable value,” said Eileen Skone-Rees, who oversees the district’s contracts with companies that supply one-on-one aides.

In Families cling to hope of autism ‘recovery’, the Times focuses on ABA. Biomedical approaches are not really discussed.

The article talks about ABA from the early work of Ivar Lovaas to the present day, where it is common in some school districts and regional centers. The high costs and the level of research support are discussed along with examples of children who are success stories and those who are not.

In Autism hidden in plain sight, the Times looks at how autism is often missed in adults.

The Times presents an intriguing look at the past in medical records from a child diagnosed by Leo Kanner (whose work coined the term “autism”).

The times provided a number of slide show vignettes of people they interviewed.

I can’t link to them directly, but I’ve watched a few and enjoyed them. Jeane Duquet, autistic adult diagnosed at age 39 (right side, middle). Jesse Castillo, age 11 (bottom right corner)

The author of the series, as well as Catherine Lord were interviewed by NPR:”400″ height=”446″ />

I would certainly have done some things differently had I written the series. I would have chosen different wording, for example. Yes, the pieces brought out some less than pleasant perspectives. I’ve read a few complaints about the series, from not supporting vaccine causation or biomedical approaches to presenting autism as a costly burden. Ironically, these complaints come from the same people who repeatedly say that “autism costs society $3.5 million per individual”. A big piece of that $3.5M is ABA and if we as a community (or part of the community) are to defend the need for ABA, we have to accept that there is a cost. I believe, and I commented, that the choice of language at times put a negative slant where one was not needed. However, the series put some very good information out, including: 1) the “epidemic” has a large portion which is driven by social factors, with a much smaller part that may be a real change in the number of autistics, 2) services are not handed out on a silver platter. Parents and autistics have to fight for what supports the law says they should get, 3) 1:1 therapies such as ABA may be effective, but they are expensive and the research behind them is still incomplete and 4) adult autistics are out there in greater numbers than is currently reported.

The biggest complaint about the series is that it portrays parents as seeking diagnoses for their kids for some sort of financial gain. Dr. Jay Gordon (a major promoter of the vaccine-epidemic idea) has noted this where Mr. Zarembo has been interviewed ( Mr. Zarembo makes it clear in the interview that this is not his point. That the autism diagnosis “opens the door” and that parents are doing what they should for their children–including fighting hard to obtain appropriate services once the door is opened.

For those complaining that the LA Times series didn’t cover the vaccine-epidemic idea or biomedical approaches to autism: I’d recommend you be thankful. Quite frankly an evidence driven newspaper series on these issues will not go the way you want.

Autism parent’s listening day

1 Nov

Just as there shouldn’t be any one “Autistics Speaking day” (ASDay), there shouldn’t be any one “autism parent’s listening day”. That said, since this is “Autistics Speaking Day“, and I’m not autistic, I felt I would contribute by listening.

My guess is that Liz Ditz at I Speak of Dreams may compile a list of contributions from around the web in addition to those contributions on Autistics Speaking Day. As such, I’ll try to link to those sites. Julian Frost, over at AutismJungle, has the advantage of time zones and one of the first ASDay posts, Autistics’ Speaking Day: My Sense of Humour. I look forward to more ASDay posts.

Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults

27 Oct

ASAN have launched a project on navigating college. This includes a website, and a book “Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults” (available for download from the website, and in print from the New Hampshire University Institute on Disability bookstore.

Leaving high school and going to college is complicated for everyone. But if you’re a student on the autism spectrum who is about to enter higher education for the first time, it might be a little bit more complicated for you.

Maybe you’re worried about getting accommodations, getting places on time, or dealing with sensory issues in a new environment. Maybe you could use some advice on how to stay healthy at school, handle dating and relationships, or talk to your friends and classmates about your disability. Maybe you want to talk to someone who’s already dealt with these issues. That’s where we come in.

Navigating College is an introduction to the college experience from those of us who’ve been there. The writers and contributors are Autistic adults, and we’re giving you the advice that we wish someone could have given us when we headed off to college. We wish we could sit down and have a chat with each of you, to share our experiences and answer your questions. But since we can’t teleport, and some of us have trouble meeting new people, this book is the next best thing.

ASAN was able to get you this book with the help of some other organizations. The Navigating College Handbook was developed in collaboration with Autism NOW, and with funding from the Administration on Developmental Disabilities. The University of New Hampshire Institute on Disability is helping us with distribution. We’re really grateful for all of their help in getting this book out.

Good luck, and happy reading! We hope it helps.

ASAN have a Facebook page, Navigating College. They are looking for feedback. From the ASAN Facebook page:

ASAN is looking for high school and college students on the spectrum to give feedback on our new Navigating College handbook, now available for free download. If you’re interested, write us at or comment on this post. If we use your feedback as part of our website, we’ll mail you a free hard copy of the handbook for you to enjoy!

Prevalence and Correlates of Autism in a State Psychiatric Hospital

24 Aug

I’ve said it before: I really like David Mandell’s work. He and his team take on some very important and tough questions. I am very concerned about the lack of information on autistic adults. We don’t know an accurate prevalence. Without study ongoing into the needs of autistic adults, those of us with autistic children will face a

That’s why I like studies like this one: Prevalence and Correlates of Autism in a State Psychiatric Hospital.

This study estimated the ASD prevalence in a psychiatric hospital and evaluated the Social Responsiveness Scale (SRS) combined with other information for differential diagnosis. Chart review, SRS and clinical interviews were collected for 141 patients at one hospital. Diagnosis was determined at case conference. Receiver operating characteristic (ROC) curves were used to evaluate the SRS as a screening instrument. Chi-squared Automatic Interaction Detector (CHAID) analysis estimated the role of other variables, in combination with the SRS, in separating cases and non-cases. Ten percent of the sample had ASD. More than other patients, their onset was prior to 12 years of age, they had gait problems and intellectual disability, and were less likely to have a history of criminal involvement or substance abuse. Sensitivity (0.86) and specificity (0.60) of the SRS were maximized at a score of 84. Adding age of onset <12 years and cigarette use among those with SRS 80 increased specificity to 0.90 but dropped sensitivity to 0.79. Undiagnosed ASD may be common in psychiatric hospitals. The SRS, combined with other information, may discriminate well between ASD and other disorders.

For reference:

Sensitivity relates to the test’s ability to identify positive results.
Specificity relates to the ability of the test to identify negative results.

Identifying autistic adults is not easy. Prevalence studies are far more difficult than when working with students. But Prof. Mandell is out there, trying to find autistic adults. In this case, he found that in a given psychiatric hospital, about 10% of the patients were autistic. He is calibrating instruments (the SRS together with correlates like smoking, age-of-onset, ID) to provide for a fairly direct screening tool.

This is one type of work that needs to be done. I’m glad that Prof. Mandell’s group is out there doing it, but I hope that more groups pick this up in the future.

ACTION ALERT: What Does Community Mean To You? Let Medicaid Know!

11 Jun

Here is an action alert from the Autistic Self Advocacy Network (ASAN)

What does community mean to you? For some people, this question doesn’t mean much but for the hundreds of thousands of Americans receiving Medicaid Home and Community Based Services (HCBS), the meaning of community has huge implications. Last year, the State of Missouri attempted to use Medicaid dollars allocated to serving individuals with disabilities in the community for the construction of group homes on the grounds of an institution. The Center for Medicare and Medicaid Services (CMS) quite rightly refused to allow Missouri to use Medicaid HCBS funding for this plan, as the purpose of the HCBS program is to help people avoid institutionalization, not to support settings that further segregate people from their communities.

Now our friends at CMS are trying to put in place strong minimum standards for HCBS settings, to prevent what almost happened in Missouri from occurring in the future. CMS has proposed regulations which would prevent HCBS dollars going to institutional facilities, settings which are on the grounds of an institution, settings which are segregated on the basis of disability and settings which have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep. This is an unprecedented opportunity for the disability community to support a real minimum standard for community living.

We need your help to make these standards a reality. CMS’ proposed rulemaking (available here) is only open for comments for four more days (it closes this Tuesday, June 14th at 5 PM) and we know that the usual suspects in the institution and nursing home industry have already written in opposing any standards for how HCBS dollars are used. We need people to write in to tell CMS that community living does not occur on the grounds of an institution and doesn’t include arbitrary restrictions on the rights of people with disabilities.

Here’s what you can do:

1. Write in to CMS and tell them that you SUPPORT the proposed rulemaking by going to:!submitComment;D=CMS-2009-0071-0302

2. Don’t hesitate to add in your thoughts about what Community should mean and make suggestions about things that CMS could add to their proposed rulemaking. If you’re looking for ideas, don’t hesitate to use ASAN’s comments as an example. You can feel free to use our language if it makes it easier. Our comments are available here:

3. Send a copy of this advocacy alert to your friends and colleagues encouraging them to write in too – the more people who write in – be they people with disabilities, parents, professionals or just supportive allies – the stronger our position will be. Help us get the word out!

Remember to write in by THIS TUESDAY June 14th at 5 PM. This is a critical opportunity to have our voices heard and we shouldn’t let it pass us by. Remember, Nothing About Us, Without Us!

The Autistic Self Advocacy Network

ASAN: Tell Congress “No” to Three More Years of the Same On Autism Policy

29 May

The Combating Autism Re-authorization Act (CARA) has been started in the U.S. legislature. The Autistic Self-Advocacy Network (ASAN) has issued a position statement on the bill:

Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators’ good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We’re urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms. You can reach them through the Capital Switchboard at (202) 224-3121 by giving your state and asking to be put through to your Senator. Making the call and urging their opposition is important even if you don’t feel comfortable having a longer conversation, but if you want to provide additional reasons to oppose this extension we have provided several below:

A three year extension of the existing Combating Autism Act means a three year delay before Congress takes any meaningful action on services for Autistic people across the lifespan. It means three years before any new supports for adults on the autism spectrum are introduced and three years before any of the problems with the status quo are fixed. We can’t afford to wait that long.

CAA’s existing programs enable a severe bias in the autism research agenda against services and adult issues. According to the recently released IACC Research Portfolio, less than one percent of autism research dollars spent in 2009 went to research relating to adults while only three percent went to research about improving services, supports and education! This inequity calls out for change.

CAA’s existing structure excludes the very people who should be at the center of the autism conversation: Autistic people ourselves. By locking in place for another three years a bill that was passed without the involvement of self-advocates, Congress would be sending a message that the needs and perspectives of Autistic adults don’t matter.

Any long term extension of CAA must involve additional investments in services, greater inclusion of self-advocates in every program and more respectful language shifting from “combating autism” to supporting Autistic people. Call Congress today at (202) 224-3121! Remember to call twice in order to reach both of your Senators. If for accessibility reasons, you need to e-mail your Senators instead you can find their e-mails on the Senate website at this link.

We need your help to remind Congress they can’t ignore the voices of the Autistic community. As always, Nothing About Us, Without Us!


The Autistic Self Advocacy Network

Sex and intellectual disability – dealing with sexual health issues.

23 May

Sexual health is a vital but often neglected aspect of healthcare for people with intellectual disability, to quote one of the abstracts below. These appear on what appears to be a special focus issue of the Australian Family Physician on intellectual disabilities. The two papers on sexuality are short but broach a subject that doesn’t come up very much: sexuality amongst the intellectually disabled.

I’ll admit it, whenever I hear someone say that an adult “…is developmentally at about 5 years old” or something to that effect, I cringe a bit. Physically, they are developmentally adults. Adults most often have a drive to seek sex. Beyond that, sex is not always consensual and the intellectually disabled are all to often targets.

I’m not going to go into details about these papers other than to point out that they are out there and I’m glad there is some ongoing dialogue. And, to highlight the concluding paragraph of the first abstract:

Most participants reported unwanted or abusive sexual experiences. They described sequelae such as difficulties with sex and relationships, and anxiety and depression. They described themselves as having inadequate self protection skills and difficulty reporting abuse and obtaining appropriate support. Their understanding of sex was limited and they lacked the literacy and other skills to seek information independently. It is important for general practitioners to be aware of the possibility of sexual abuse against women with intellectual disability, and to offer appropriate interventions.

Here are the two papers (pdf’s online):

Women with intellectual disabilities – a study of sexuality, sexual abuse and protection skills

Sex and intellectual disability – dealing with sexual health issues

and the abstracts:

. Aust Fam Physician. 2011 Apr;40(4):226-30.
Women with intellectual disabilities – a study of sexuality, sexual abuse and protection skills.
Eastgate G, Van Driel ML, Lennox NG, Scheermeyer E.

MBBS, FRACGP, is Senior Lecturer, Queensland Centre for Intellectual and Developmental Disability, School of Medicine, The University of Queensland, Mater Hospitals, Brisbane, Queensland.

Sexual abuse and abusive relationships are known to be especially common in people with intellectual disability. This study explored how women with intellectual disability understand sex, relationships and sexual abuse, the effects of sexual abuse on their lives, and how successfully they protect themselves from abuse.

Semistructured narrative interviews with nine women with mild intellectual disability in Queensland, Australia. Interviews were audio recorded, transcribed, coded and analysed qualitatively.

Major themes that emerged were: sexual knowledge and sources of knowledge; negotiating sexual relationships; declining unwanted sexual contact; self protection strategies; sexual abuse experiences; and sequelae of sexual abuse.

Most participants reported unwanted or abusive sexual experiences. They described sequelae such as difficulties with sex and relationships, and anxiety and depression. They described themselves as having inadequate self protection skills and difficulty reporting abuse and obtaining appropriate support. Their understanding of sex was limited and they lacked the literacy and other skills to seek information independently. It is important for general practitioners to be aware of the possibility of sexual abuse against women with intellectual disability, and to offer appropriate interventions.

Sex and intellectual disability – dealing with sexual health issues.
Eastgate G.

MBBS, FRACGP, is Senior Lecturer, Queensland Centre for Intellectual and Developmental Disability, School of Medicine, The University of Queensland, Mater Hospitals, Brisbane, Queensland.

Sexual health is a vital but often neglected aspect of healthcare for people with intellectual disability. It may initially be difficult for the general practitioner to raise sexuality issues with patients with intellectual disability, but there is potential for simple interventions that offer great benefit.

This article describes ways in which the GP may be able to assist people with an intellectual disability with their sexual health needs.

It is important to engage the person with intellectual disability directly, preferably alone. A person with intellectual disability is likely to have the same range of sexual and relationship needs as other adults. However, there may be multiple barriers to forming healthy, equal sexual relationships. Sexual abuse is widespread. Reporting abuse may be difficult for a person with limited verbal skills, and prevention and support services are limited. The GP is well placed to offer sexual health services such as information, contraception and cervical and sexually transmissible infection screening, and to discourage inappropriate treatments such as sterilisation for social rather than medical reasons, and androgen suppression.

UK Research places huge question mark over the autism ‘epidemic’

3 May

Just a quick couple of quotes as I’m in a rush.

Researchers found nearly one percent of Britons older than 16 years have autism, a rate that is similar to that seen in children. Younger people were no more likely to be affected than older ones, however, which would have been expected if the condition were truly on the increase.


And this – same source.

Fears that the condition is becoming more and more common in children have launched both researchers and parents on a fierce search for the underlying reasons.

So far those efforts haven’t paid off, however, and the much-reported claim that childhood vaccines could be the culprit has been widely discredited.

“None of them had been diagnosed (previously) with autism,” he said. “I think for me the issue is that people have been ignoring autism in adulthood and only focusing on children.”

Preliminary program for IMFAR

20 Apr

IMFAR, the International Meeting For Autism Research will be held next month (May 12-14). The full scientific program is not up yet (with all the details about who is talking and when), but the preliminary program is online. You can see what sessions are focusing on and see who the keynote speakers are.

Here are some sessions which caught my eye:

Characterizing Cognition in Nonverbal Individuals with Autism: Innocation Assessment and Treatment (an invited symposium–i.e. the conference felt this was an important topic and specifically invited speakers to present their research)

Sex Differences and Females with Autism Spectrum Disorders

Interventions: Behavioral CAM and Psychopharmacology Treatments

In addition, a number of sessions have full or partial focus on adults:

Adults with Autism Spectrum Disorders: Challenges for Epidemiological and Outcome Research (another invited symposium)

Epidemiology: ASD Prevalence, Trends, and Adults with ASD

a poster session on Adults with Autism

Structural and Functional Brain Imaging in Older Children, Adolescents and Adults with ASD

If you missed it, let me draw your attention: there is a session that includes CAM–Complementary and Alternative Medicine