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ASAN President Ari Ne’eman on C-SPAN’s Washington Journal Tomorrow (Saturday) at 9:15 AM

30 Nov

CSPAN will be hosting a program discussing autism with Autistic Self Advocacy Network (ASAN) president Ari Ne’eman tomorrow. Below is the email I received from ASAN:

ASAN President Ari Ne’eman on C-SPAN’s Washington Journal
Tomorrow at 9:15 AM

Yesterday was a historic day for the Autistic self-advocacy movement. For the first time, we had representation at a congressional hearing on autism. Although much of yesterday’s House Committee on Oversight and Government Affairs hearing focused on the same tired old questions on causation and cure, but thanks to your efforts, we had a seat at the table to offer another perspective for the first time.

Tomorrow, we’ll have a chance to continue having our voices heard. C-SPAN’s influential morning call-in program Washington Journal has invited ASAN President Ari Ne’eman to come on the show tomorrow morning from 9:15-10 AM to discuss federal disability policy, autism acceptance and the neurodiversity movement. And we want you to be a part of it.

To participate, you can call-in, email or tweet. C-SPAN has specifically urged Autistic people to participate, and has provided a dedicated call in line to help make sure we get on the air.

Call-In Numbers:
Democrats: (202) 585-3880
Republicans: (202) 585-3881
Independents: (202) 585-3882
Autistic People: (202) 585-3883
Email: journal@c-span.org
Twitter: http://twitter.com/cspanwj

Please follow us as we also livetweet from @autselfadvocacy with hashtag #AutismOnCSPAN.

I assume that times are Eastern Standard.

California Police Ignored, Mishandled Sex Assaults Reported by Disabled

30 Nov

This story from The Daily Beast: California Police Ignored, Mishandled Sex Assaults Reported by Disabled. Obviously potentially a trigger.

We’ve discussed sexual assaults in group homes in California in the past few years. Police made some of those cases priorities. The Daily Beast story discusses cases where there is a lack of even basic OK investigation:

Patients at California’s board-and-care centers for the developmentally disabled have accused caretakers of molestation and rape 36 times during the past four years, but police assigned to protect them did not complete even the simplest tasks associated with investigating the alleged crimes, records and interviews show.

Witnesses for Congressional hearing on autism announced

28 Nov

Thursday the US House Committee on Oversight & Government Reform will hold a hearing on autism: 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism.

The witness list has been made public on the committee’s website:

Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Coleen Boyle, Ph.D.
Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Mr. Bob Wright
Co-Founder
Autism Speaks

Mr. Scott Badesch
President
Autism Society

Mr. Mark Blaxill
Board Members
SafeMinds

Mr. Bradley McGarry
Coordinator of the Asperger Initiative at Mercyhurst
Mercyhurst University

Mr. Michael John Carley
Executive Director
Global & Regional Asperger Syndrome Partnership

Mr. Ari Ne’eman
President
Autistic Self Advocacy Network

Congressional hearing to include Autistic witnesses

27 Nov

This Thursday, Nov. 29, the U.S. House of Representatives Committee on Oversight and Government Reform will hold a hearing “1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism“. The original witness list (at least as far as I have heard, it is not on the Committee’s website) did not include autistic witnesses. It appears that has changed. Here is an announcement from the Autistic Self Advocacy Network (ASAN):

On November 29th, the House Committee on Oversight and Government Reform will be holding a hearing on autism. Invited witnesses include people from government agencies, parent autism advocacy organizations, AND Autistic self-advocacy organizations. We are pleased to report that the House Committee on Oversight and Government Reform staff have just reached out to us to invite Autistic representation to this Thursday’s hearing.

Thanks to all of you for making your voices heard and to the House Committee for hearing the message Nothing About Us, Without Us! Whether you faxed letters of support for Autistic representation at the upcoming hearing or signed our petition, your voice has been heard. Now Autistic voices will be heard as well. ASAN President Ari Ne’eman has been invited as one of not one but TWO Autistic witnesses scheduled to testify at the hearing.

The journey doesn’t end there. Come join us in showing support to Autistic people speaking! We’ll be gathering together at the Rayburn House Office, Room 2154 on the day of the hearing. The hearing itself will begin at 2 PM, but as we anticipate a packed room ASAN will begin gathering besides the door to the hearing at 11 AM. RSVP via our Facebook event page.

You made this happen!

Regards,

The Autistic Self Advocacy Network

It will be an uphill battle to get anything accomplished at this hearing, in my opinion. It’s a lame duck congress and a relatively short hearing. But the precedent has been set that autistics will be present. The precedent was set years ago that parents will be present.


By Matt Carey

Aging with intellectual disability

26 Nov

Care for the developmentally disabled has improved over recent generations and life and expectancy has increased. As a result, issues surrounding old age need more attention. Two studies out recently open the dialogue in two areas: hospice care and retirement options.

Advanced age and end of life concerns present areas often not focused upon by parent advocates with developmentally disabled children. There are many issues which are more immediate and time and energy are limited. But few parents will be present to advocate for their own children at end of life. These are prime examples of where listening to adults with DD and helping them advocate for changes will pay off in a better life for our kids.

Here are the abstracts:

Unique and universal barriers: hospice care for aging adults with intellectual disability.

Friedman SL, Helm DT, Woodman AC.
Abstract

Abstract As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.

PMID: 23167489 [PubMed – in process]

8. Am J Intellect Dev Disabil. 2012 Nov;117(6):497-508. doi: 10.1352/1944-7558-117-6.497.

Active aging for individuals with intellectual disability: meaningful community participation through employment, retirement, service, and volunteerism.

Fesko SL, Hall AC, Quinlan J, Jockell C.
Abstract

Abstract As individuals with intellectual and developmental disabilities become more engaged in community employment, it will be critical to consider how their employment experience changes as they age. Similar to other seniors, individuals will need to consider whether they want to maintain their employment, reduce their work commitment, or retire completely. If they do choose to retire, what activities will they choose to engage in, and what service or supports might be necessary? This article considers the issues faced by all aging workers in regard to retirement planning and active aging as well as specific strategies for individuals with intellectual and developmental disabilities to remain active and engaged. Recommendations for service options, policy consideration, and future research are also discussed.

PMID: 23167488 [PubMed – in process]
9. Am J Intellect Dev Disabil. 2012 Nov;117(6):455-63. doi: 10.1352/1944-7558-117.6.455

An open letter to the Committee on Oversight & Government Reform

23 Nov

Dear Committee on Oversight & Government Reform,

I write to you in regards to your upcoming autism hearing. Much has happened in the decade since the Committee last met on autism.

“1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism”

We need to shift from seeing autism as primarily a discussion of children to being focused on the entire population. We need to shift from being primarily focused on viewing autism as primarily an epidemiological topic to focusing on improving the lives of our citizens. There are over three million American autistics. Improving the lives of autistics should be a top priority.

Consider this simple paragraph, the description of the hearing:

“The hearing will address the federal response to the recent rise in Autism Spectrum Disorders diagnoses, as well as the allocation of government resources for ASD. The hearing will also review research and treatment options for those diagnosed with ASDs.”

Research and treatment options are after allocation of government resources for ASD, as though these are an afterthought.

Now, consider this simple rewrite:-

“The hearing will address the federal response to the recent rise in Autism Spectrum Disorders diagnoses, as well as research and treatment options for those diagnosed with ASDs. The hearing will also review the allocation of government resources for ASD.”

This sends the message that research and treatment are high enough priorities to include in a discussion of allocation of resources.

Much has been learned since the Committee last met to discuss autism. We know that much of the rise in autism prevalence estimates is due to social factors including changes in how autism is recognized. And we know we aren’t finished quantifying social factors involved in the increase. The question of whether the true incidence of autism is really rising remains open. But there is not a question of whether autistics in previous generations were missed. The question is how many were missed. Further, we know that the characteristics of the autism population are much different than previously thought. The recent CDC estimate of 1 in 88 included the result that the majority identified did not have intellectual disability.

The autism population is larger and a broader spectrum than thought even the short time ago when Pub. Law No. 109-416 (the CAA) was enacted. The government response needs to be broader in response. Greater resources are needed to adequately address the role the government is taking in autism.

An example of an opportunity this new understanding presents is in employment. A study from the UK showed that not only is the adult prevalence about 1%, but that many of these adults are living alone and are un- or under-employed. Another way to look at that is that a large fraction of the un- and under-employed are likely autistic. With an understanding of what supports are needed in the workplace and how to effectively transition from education to employment, we could make a big impact on unemployment.

Appropriate education for autistics can be more expensive than education for non-autistic students. As more children are correctly diagnosed and appropriately served, special education costs rise. The federal government has never lived up to its commitment to fund 40% of special education costs. President Obama promised to make good on this promise while campaigning four years ago. We are still waiting.

I note that the witnesses for this hearing do not include someone from the department of education nor anyone with a primary focus on education.

Autistic children become autistic adults. Today’s autistic adults are largely undiagnosed and unstudied. This is true for those adults with Asperger syndrome as well as those with intellectual disability. We don’t know what supports in living condition, tertiary education or working conditions are most appropriate for autistics. We know there are co-occurring conditions such as epilepsy and intellectual disability with autism, but we don’t know what sort of medical conditions might be more common or have early onset in adult and aging autistics. The title of a study out today drives this home: “Into the unknown: aging with autism spectrum disorders.” We just don’t know the specifics of this population while they age.

The needs of autistics with multiple disabilities are as high as ever.  Often the autism spectrum is presented as having one dimension, with the level of intellectual disability defining one’s place on the spectrum. This approach is far too simplistic and ignores the great variation in other measures. For example, just within the population with autism and intellectual disability there is great variation of the unique needs and strengths.  Unfortunately all too often schools lump autistic children into categories based on intellectual ability rather than needs. We are not giving our educators and our students the tools they need.

“Success” in autism treatment and education is frequently defined as achieving some level of non-autisticness. Of becoming “indistinguishable from peers”. However, what may be considered a small advance by this measure could be huge for an autistic with intellectual disability.  About 5% of autistics are non verbal and a larger fraction are non conversational. A recent review found fewer than 200 examples in the published literature of non-verbal autistics learning to speak past age five. And yet the same team has shown that it is possible to teach verbal communication to older autistics. Since the last autism hearing by the Committee advances in portable technology have led to a boom in augmentative and alternative communication (AAC). Giving a non verbal or minimally verbal individual a more effective means of communication may be small by some measures of success but can be life changing for the individual. To paraphrase on autistic writer: self-advocacy begins with “no”. A single word, spoken or presented through AAC, is a giant leap for some.

The federal response to autism includes congress. 2011 was a year where congress was accused many times of “kicking the can down the road”. Such was the case with autism. Pub. Law No. 109-416 was reenacted at the last minute and for a short time. I am grateful that it was reenacted but autism efforts are long term. Even organizations which criticize the government’s efforts as accomplishing too little over the short term, organizations which promote the idea that answers to tough autism are straightforward, even they are calling for a permanent federal autism infrastructure. Congress needs to accept a long term commitment.

Autism presents a much more broad and long-term topic than the Committee attempted to address a decade ago. It is a more broad and long-term topic than many try to present today. The federal response to autism has been significant and serious but it needs to expand to address the real and serious needs of the autism communities.

Respectfully submitted,

Matthew J. Carey, Ph.D.
San Jose, California

Autism Hearing? Let yourself be heard

21 Nov

It has been reported that a hearing of the Committee On Oversight & Government Reform will held on autism on November 29th:

The panel, chaired by Rep. Darrell Issa (D-Calif.), has invited witnesses from the National Institutes of Health and the Centers for Disease Control and Prevention, as well as Autism Speaks and other advocacy groups.

Autism Speaks appears to be confirming this meeting is being set up.

There hasn’t been such a hearing in many years (think a decade). The previous hearings were held by Congressman Dan Burton, who was a major proponent of the idea that vaccines were causing an epidemic of autism. Congressman Burton is retiring, and the focus of the meeting is likely not going to be as strongly vaccine oriented in the past, but that will likely be a discussion point. From what I’ve been able to gather, so far the meeting will include no Autistic representatives nor Autistic-run organizations.

Should the meeting happen (it isn’t on the calendar for the Committee yet), wouldn’t you like the opportunity to have your views heard? One can fax the Committee, but they are not under an obligation to include public comments. I say this not to dissuade you from sending a comment, but, instead, to encourage you to ask strongly that your comments be included.

I have set up a website which will allow you to easily send a fax to the committee. Follow this link and you will have a form which you can fill out and send your message. The form is very basic (here is a screenshot). The message you send will be emailed to you and emailed to a fax server which will send it to the committee’s fax number. (alternatively, you can fax them directly at (202) 225-3974).

In my opinion, U.S. Autism policy affects communities the whole world over. As such, I would encourage international readers of Left Brain/Right Brain to submit comments as well. Consider making it clear that you are from outside the U.S..

Privacy issues: the site sends two emails. One to the email address you give and the other to a server which will send the faxes. I have access to the logs on that server and, for some time, I can read the faxes sent. But I don’t.

You are free to chose your talking points. Here are some of mine:

1) We need focus on improving the quality of life of Autistics
2) While not all Autistics can self-advocate, if we are going to have autism organizations represented, we need to have Autistic-run organizations represented.
3) Autism is a very broad spectrum, all with challenges of some sort. The government’s response needs to be broad (read-larger than it is now) in order to encompass all the needs of these communities.
4) The vaccine-epidemic hypothesis has been very damaging to the autism communities. Please don’t allow this meeting to be a way around the science in order to keep that idea alive.
5) There are faux therapies in common use for autism. Many are harmless. Some are dangerous and based on incredibly poor science. We need to get accurate information out about these practices.

The fax is very basic. Here is a copy of one I sent earlier this week. I redacted my phone number and email address, but those will be included in the fax you send (note that those are voluntary fields. In other words, you can leave the phone number and city/state boxes blank).

Again, take a moment or take longer and put together a comment for the Committee. Follow this link and fill out the form and send a fax.

Youth with autism gravitate toward STEM majors in college — if they get there

16 Nov

Recent research has shown that there is a lack of support for the transition from school to adulthood for autistics in the U.S.. That research came from one of the researchers I admire most: Prof. Paul Shattuck of Washington University in St. Louis. Prof. Shattuck’s team has a new paper out with : Science, Technology, Engineering, and Mathematics (STEM) Participation Among College Students with an Autism Spectrum Disorder.

Here is the abstract:

Little research has examined the popular belief that individuals with an autism spectrum disorder (ASD) are more likely than the general population to gravitate toward science, technology, engineering, and mathematics (STEM) fields. This study analyzed data from the National Longitudinal Transition Study-2, a nationally representative sample of students with an ASD in special education. Findings suggest that students with an ASD had the highest STEM participation rates although their college enrollment rate was the third lowest among 11 disability categories and students in the general population. Disproportionate postsecondary enrollment and STEM participation by gender, family income, and mental functioning skills were found for young adults with an ASD. Educational policy implications are discussed.

The press release can be found at Youth with autism gravitate toward STEM majors in college — if they get there, but here are a few quotes:

It’s a popularly held belief that individuals with an autism spectrum disorder (ASD) gravitate toward STEM majors in college (science, technology, engineering and mathematics).

A new study, co-authored by Paul Shattuck, PhD, assistant professor at the Brown School at Washington University in St. Louis, confirms that view yet finds that young adults with an ASD also have one of the lowest overall college enrollment rates.

and,

The study found that 34.3 percent of students with an ASD gravitated toward STEM majors. That’s not only higher than their peers in all 10 other disability categories, but also higher than the 22.8 percent of students in the general population who declared a STEM major in college. Science (12.1 percent) and computer science (16.2 percent) were the fields most likely to be chosen by students with an ASD.

Prof. Shattuck put the need for attention to the needs of autistic adults much better than I:

“More and more children are being identified as having autism,” Shattuck says, “children who grow up to be adults. With the majority of a typical lifespan spent in adulthood, that phase of life is the one we know least about when it comes to autism spectrum disorders.

“This study is the latest addition to a growing body of evidence we are building here at the Brown School about the needs, strengths and challenges facing this vulnerable population,” Shattuck says.

While for many of us parents, college is not really in the likely future for our autistic children. The basic theme is still the same: “With the majority of a typical lifespan spent in adulthood, that phase of life is the one we know least about when it comes to autism spectrum disorders”


By Matt Carey

Clinical features of suicide attempts in adults with autism spectrum disorders

16 Nov

For those who don’t read Left Brain/Right Brain regularly, know that I am constantly bothered by the lack of attention to understanding the needs of autistic adults that I see in much of the ongoing research and in many parent-advocacy groups. My child is still somewhat young, but I realize that real understanding comes with time. Not only will attention to autistic adults provide benefit for those already of age, but it will set the stage for a better life for the autistic children of today.

When I see an study titled “Clinical features of suicide attempts in adults with autism spectrum disorders”, I am taken aback by just how serious this question is. The study out of Japan is preliminary but they found 7.3% of patients seen for attempted suicide are autistic. Take whatever prevalence for autism among adults you think is appropriate. I suspect the autism prevalence in adults is closer to 1%, but that’s still a 7x higher rate of attempted suicide. Much of the resistance to focusing attention on the needs of adults comes from groups promoting the idea of a vaccine-induced autism epidemic. If you believe the autism prevalence in adults is something like 1 in 10,000 (0.01%), this is would mean that autistic adults are attempting suicide in Japan at a rate of 700 times greater than the general population.

Our results indicate that ASDs should always be a consideration when dealing with suicide attempts in adults, in particular, in cases of males. Individuals with ASDs attempted suicide using serious methods, and, therefore, they may have a tendency to complete it at a first attempt. This was only a preliminary study. Thus, the clinical features of individuals with ASDs who attempt suicide must be clarified. In addition, interventions focusing on preventing suicide attempts in individuals with ASDs are required.

Yes, autistics are not only attempting suicide more often, they are using more serious methods. Like cutting/stabbing one’s self. Like jumping from heights or carbon monoxide intoxication.

The autistics in this study had the same (or a little higher) education level as the non-autistics who were attempting suicide. While psychiatric history was high (about 50%) it was lower in the autistic group than the non-autistics.

There are more comparisons made and which could be discussed but, for now, I’ll bring this back to: autistics in this study are attempting suicide more often and with more serious methods than non-autistics. If that doesn’t make people consider the importance of understanding the unique needs of autistic adults, I don’t know what will.

Here is the abstract:
Clinical features of suicide attempts in adults with autism spectrum disorders

OBJECTIVE:
The objective of this study was to investigate the frequency and clinical features of suicide attempts in adults with autism spectrum disorders (ASDs).

METHODS:
We enrolled 587 consecutive patients aged 18 or over who attempted suicide and were hospitalized for inpatient treatment. Psychiatric diagnoses, suicide attempt frequency and clinical features were compared between ASD and non-ASD patients.

RESULTS:
Forty-three (7.3%) of the 587 subjects who attempted suicide had ASDs. The incidence of patients with mood disorders was significantly lower (Fisher’s Exact Test, P=.043) and that of those with an adjustment disorder was significantly higher (Fisher’s Exact Test, P<.001) in the ASD group than in the non-ASD group. The average length of stay at both the hospital and intensive care unit in the ASD group was longer than that in the non-ASD group (z=-2.031, P=.042; z=-2.322, P=.020, respectively).

CONCLUSIONS:
ASDs should always be a consideration when dealing with suicide attempts in adults at the emergency room.


By Matt Carey

Survey of Services Needs for Adults with Autism

11 Oct

There is a great need for more and more accurate information on the needs of autistic adults. Information will allow for better advocacy and changes.

The Autism Science Foundation and the UJA Federation of New York have teamed up with the Interactive Autism Network (IAN) to gather data in a survey.

Now is the chance to be heard. Autistic adults, parents of autistic adults and representatives of autistic adults are encouraged to participate. Details are below in a message from Alison Singer at the Autism Science Foundation.

Now is the chance to be heard.

We need your help!

As many of you know, there is little information about the changing needs of adults with autism spectrum disorders (ASD) to guide those planning programs and services. That is why the UJA Federation of New York and the Autism Science Foundation are asking adults with ASD (and their parents or guardians) to complete a survey addressing what is going well in daily life, and what is a challenge. The results of this survey will inform decision making with regard to which programs should be expanded and which may no longer be of value.

We invite you to take this survey by joining the Interactive Autism Network (IAN) – the world’s largest online autism research project — and then completing the UJA Adult with ASD Survey. As a member of IAN, you’ll be informed about future surveys and studies, with a chance to provide ongoing input regarding the experience of adults with ASD over time. IAN registration and this survey can be completed entirely online and will take approximately 20 minutes.

You are eligible to participate in IAN and the UJA Adult with ASD Survey if you are:

· An adult with ASD who is independent
(that is, you are not under anyone’s legal guardianship)

· The parent of an independent adult with ASD
(that is, your adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions)

· The legally authorized representative of a dependent adult with ASD
(For example, you may have legal guardianship or medical power of attorney for the adult with ASD)

If you’d like to read the IAN Research study consent form, including privacy policies, before continuing, click here.

To begin registration and the survey, click on the link below:
http://bit.ly/ORf7d5

If you have any questions, the IAN team is happy to answer them for you. You can contact them at 1-866-348-3440 or ian@kennedykrieger.org.

Your participation is critical, and will inform those planning programs about which resources and services adults with ASD and their families need most. Thank you in advance for your support and please forward this email to any individuals or groups who may be interested in participating.

Sincerely,

Alison Singer
President, Autism Science Foundation

The press release can be found on the Autism Science Foundation’s website.


By Matt Carey