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Deficit, Difference, or Both? Autism and Neurodiversity

11 May

A pubmed abstract out this week Deficit, Difference, or Both? Autism and Neurodiversity brings the fourth entry in pubmed using the term “neurodiversity”. One other paper is in Portuguese, and another is from Sweden. That said, I am looking forward to reading this study. I say looking forward because when I checked the the full paper was not available yet. I know of the first author, though. Steven Kapp is an autistic researcher at UCLA. He is a member of the Autistic Self Advocacy Network (ASAN) and was on my list of people to speak with at IMFAR last year.

Here is the abstract.

The neurodiversity movement challenges the medical model’s interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.

The Simons Foundation lists this paper as one of the “papers of the week“.

You can read more about the lead author, Steven Kapp, in the UCLA paper. The Daily Bruin article is Autistic student overcomes symptoms to help treat others. The story tells a little of his childhood and how he is now a graduate student researcher. And his plans for the future:

Eleven years later, Kapp is back at UCLA as a doctoral student in psychological studies in education. His goal is to become a professor and research ways to improve the quality of life and adaptive skills of people with autism.

The paper is based on an online survey and those are prone to biases. However, the paper does appear to address some important issues on the differences *and* the overlap between the medical model and neurodiversity approaches to autism. Further it doesn’t fall into the false-dichotomy trap of many neurodiversity discussions of seeing autism as deficit *or* difference. And, as we can see from the Daily Bruin article, Mr. Kapp is interested in researching ways to improve the quality of life for autistics.

I have hope that this is an article which can help to educate researchers (and others) about neurodiversity without the straw-men and misconceptions that are used by opponents. But, beyond that, the paper starts the dialogue in the literature of how to incorporate neurodiversity ideas into research and practice. Depending on how presented, this could be a very valuable paper.

President Obama Tells The Arc, Disability Community “I’ve Got Your Back”

20 Feb

Barack Obama, President of the United States, made a surprise visit to a White House Community Leaders Briefing for The Arc.

Here is the press release on the event from The Arc:

Washington, DC – Today, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (I/DD). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”

This surprise appearance by the President of the United States was the highlight of the day for many attendees, along with the opportunity to interact with high level government officials about how they can support people with I/DD to live in the community. Over the course of the day, leaders of chapters of The Arc were briefed on topics ranging from Medicaid to education to community living and employment for people with I/DD. Many of the speakers, including President Obama, referenced the impact advocates made during budget negotiations to protect Medicaid, and encouraged The Arc and others to continue these efforts.

Another unannounced speaker was White House Chief of Staff Jack Lew, who reiterated the President’s opposition to turning Medicaid into a block grant. He also took questions from the audience, including Barbara Coppens, a member of the national board of directors of The Arc and a self-advocate who took the opportunity to speak about the importance of self-advocacy by people with disabilities.

“I tell other self-advocates – you’ve got to get out there and advocate for yourself because you can’t rely on other people to make change for you,” said Coppens to Chief of Staff Jack Lew.

The day was organized by Kareem Dale, Special Assistant to the President for Disability Policy, who kicked off the agenda by welcoming guests and speaking about employment issues. The Arc heard from Cecilia Muñoz, Director of the White House Domestic Policy Council, who spoke of their commitment to providing services and supports to all in need. Other speakers included Carol Galante, Acting Assistant Secretary – Federal Housing Administration Commissioner, Department of Housing and Urban Development; Cindy Mann, Deputy Administrator, Centers for Medicare and Medicaid Services; Robert Gordon, Executive Associate Director, Office of Management and Budget; and Tom Perez, Assistant Attorney General for Civil Rights, Department of Justice.

Assistant Attorney General Perez discussed the recent Department of Justice settlement with the Commonwealth of Virginia regarding people with I/DD who live in any of its five institutions who could live in the community. He spoke about the bipartisan work going on across the country to implement the Olmstead decision, which states that under the Americans with Disabilities Act (ADA), unnecessarily institutionalizing a person with a disability who, with proper support, is capable of and who wants to live in the community can amount to discrimination.

After a tour of the East Wing of the White House, advocates from The Arc took part in policy breakout sessions that allowed for more detailed discussions on certain issue areas, like community living, family caregiving, education, and Medicaid. The purpose of these briefings was to allow White House and administration officials to engage in a dialogue with leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives. Given the Department of Education’s announcement yesterday to allow ten states waivers from some of the No Child Left Behind law requirements, the education session with Alexa Posny, Assistant Secretary, Office of Special Education and Rehabilitation Services, was incredibly timely, as were meetings with representatives from the Department of Health and Human Services, Department of Justice, Administration on Aging, and the White House Domestic Policy Council.

“This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government allowed leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House. Our network seized on this opportunity, and we left the White House feeling a sense of accomplishment and inspiration for continued advocacy that we will take back to our communities to help grow our movement,” said Peter V. Berns, CEO of The Arc.

Epilepsy Foundation Touching Lives fundraiser

15 Dec

Below is a letter from the Epilepsy Foundation discussing their Fundraiser.

I know you are extra special. You have compassion for people with epilepsy. You’ve shown it through your support of the Epilepy Foundation. Thank you so much.

I want to tell you about another way you can touch even more lives this holiday season. You can make a donation in honor or memory of a loved one.

It’s a gift you’ll feel good about giving. It’s a gift that will help us find a cure…And until that day, make living with epilepsy a little bit easier.

We have several beautiful cards for you to choose from that we can send to your honoree or the person you choose. You can see some of the cards below.

20111214-221326.jpg

Click here to make a gift in honor of a loved one.

It will make the perfect gift for someone special. It will touch so many lives and hearts.

Thank you and best wishes throughout this season of joy and giving.

Warm Regards,

Ellen L. Woods
Vice President, Development

Judge Rotenberg Center banned from shocking new admissions

14 Nov

The Judge Rotenberg Center (JRC) has is a special needs school in Massachusetts which employs electric shocks as part of its program on a subset of its students. This practice is controversial, to put it mildly.

With thanks to Kate Gladstone for bringing this to my attention, the JRC has been banned from including these aversives on future students.

The letter below is from the Autistic Self Advocacy Network (ASAN) Disability Rights International which goes into more detail.

JRC Banned from Shocking New Admissions

Dear Supporters,

This week we can celebrate a major victory against torture of people with disabilities in the United States. The Massachusetts Department of Developmental Services (DDS) adopted new regulations last week that greatly restrict the intentional use of pain as a form of treatment – including the use of electric shock, seclusion, and restraints on young children and adults with disabilities. As documented by a recent report by Disability Rights International (DRI), Torture Not Treatment, The Judge Rotenberg Center (JRC), based in Canton, Massachusetts, has used these practices, called “aversive treatment” for decades.

Facilities licensed by the DDS in Massachusetts can no longer subject new admissions to severe behavioral interventions including electric shock, long-term restraint, or aversives that pose risk for psychological harm — in other words, mainstays of JRC’s “treatment” program.US Report Cover

No other institution in the country – or the world, as far as we can tell – uses such barbaric practices. DRI’s investigation found that the pain caused by this is so severe and outside accepted professional norms, that these practices constitute nothing less than torture. By permitting such treatment, the United States violates its obligations under international law, as defined by the UN Convention Against Torture. DRI filed our report, Torture Not Treatment, in 2010 as an urgent appeal to the United Nations. The top official on torture at the United Nations agreed with DRI, and when asked by ABC Nightline if the practices were torture, he declared, “Yes…I have no doubts about it. It is inflicted in a situation where a victim is powerless…a child in the restraint chair, being then subjected to electric shocks, how more powerless can you be?”

We applaud Massachusetts Governor Deval Patrick on taking a courageous stand by issuing an executive order for the Massachusetts DDS to review their policies regarding electric shock and other severe aversives.

The resulting new policy puts an end to the use of JRC’s electric shocks on new admissions. But we can’t declare success yet. While hundreds of children will be spared from JRC’s behavioral experiments in the future, the new policies do not stop JRC from shocking and causing psychological damage to children already placed in the center. These children and young adults remain prisoners in a very dangerous environment. The center has been repeatedly investigated for suspicious deaths and physical abuse. JRC has been fined for identifying some clinicians hired by the school as psychologists, when in fact, they were not licensed psychologists. And as a result of an investigation into a case of abuse at the facility, JRC’s director was forced to resign earlier this year after being charged with misleading a grand jury about the investigation.

DRI is encouraged by the bold statement by the US National Council on Disabilities, a federal advisory body, which cited DRI’s report, as well as the international definition of torture, to call for the use of painful shock aversives to be brought to an end.

DRI urges the Department of Justice and the Obama Administration to fullfil its obgligations under the UN Convention Against Torture. DRI calls for a blanket ban on the use of electric shock as aversive treatment for children or adults with disabilities across the nation. There is nothing stopping JRC from shocking kids already in their center — or moving their facility to a different state to avoid the new Massachusetts regulations. The Department of Justice has an open investigation into the treatment of children at JRC. We ask you to write a personal appeal to the investigators to help ensure that this torture is put to an end once and for all, and is never allowed to be duplicated anywhere else in the United States.

We are one large step closer.

Thank you for your continued support,

Laurie Signature

Laurie Ahern,
President

Eric R Sig

Eric Rosenthal,
Executive Director

Judge Rotenberg Center lobbies against seclusion and restraint bill

14 Nov

The Judge Rotenberg Center (JRC) is a special needs school which employs controversial behavior modification techiniques, including electric shock. The JRC has been the focus of much criticism for this practice, which is illegal in many (possibly most) states. Even its home state of Massachusetts has made, and continues to make, efforts to curb this practice.

In Judge Rotenberg Center lobbies D.C. against bill, the Canton Journal (a local newspaper for the JRC) notes that the JRC is lobbying to stop state legislation and federal legislation:

As the Judge Rotenberg Center in Canton gears up to oppose new state regulations that limit the use of controversial shock treatment, the school is also covering its bases in Washington.

So far this year, the Judge Rotenberg Center has paid $16,500 to Malkin & Ross, a New York-based lobbying firm, according to recent lobbying reports filed with the secretary of the Senate.

This lobbying effort includes targeting a seclusion and restraint bill:

A bill filed by Rep. George Miller, D-Calif., now the senior Democrat on the House Education and the Workforce Committee, would ban the use of physical restraint and seclusion in schools. The bill is co-sponsored by 27 Democrats, including Rep. John Tierney, D-Salem, and one Republican.

Seclusion and restraint legislation has been a major focus of autism organizations as diverse as the National Autism Association and the Autistic Self Advocacy Network.

The Miller seclusion and restraint bill, House Resolution 1381, includes language calling for children to have the right to be “Free from physical or mental abuse, aversive behavioral interventions that compromise health and safety…”

(2) Behavioral interventions for children must promote the right of all children to be treated with dignity. All children have the right to be free from physical or mental abuse, aversive behavioral interventions that compromise health and safety, and any physical restraint or seclusion imposed solely for purposes of discipline or convenience.

and specifically call for the prohibition of restraints and aversives that “compromise health and safety”:

(1) School personnel shall be prohibited from imposing on any student the following:

(A) Mechanical restraints.

(B) Chemical restraints.

(C) Physical restraint or physical escort that restricts breathing.

(D) Aversive behavioral interventions that compromise health and safety.

I guess rather than argue that their methods do not “compromise health and safety”, JRC would prefer to quash this bill. Unfortunately, JRC may get their wish. H.R. 1381 appears to be stalled, with no actions taken since it was referred to committee in March.

Autism Speaks Hails House Approval of Bill Renewing Combating Autism Act for Another Three Years

20 Sep

The U.S. House of Representatives have voted to approve the Combating Autism Re authorization Act (CARA). The announcement, from Autism Speaks, is below:

Autism Speaks Hails House Approval of Bill Renewing
Combating Autism Act for Another Three Years

Urges Quick Senate Action Before Sept. 30 Deadline

NEW YORK, N.Y. (September 20, 2011) – Autism Speaks, the nation’s largest autism science and advocacy organization, hailed today’s voice vote by the U.S. House of Representatives approving the Combating Autism Reauthorization Act, and urged the Senate to quickly complete congressional action on the bill and send it to President Obama.

The legislation would renew the 2006 Combating Autism Act, which expires September 30, renewing the federal government’s commitment to fund autism research and treatment for another three years. The bill would sustain federal funding at current levels, authorizing $693 million for research and treatment for autism and related disorders.

“Autism Speaks thanks Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA) for their leadership in assuring a strong federal response to autism, which now affects 1 in every 110 children—including 1 in 70 boys,” said Autism Speaks co-founder Bob Wright. “Autism has been declared a public health emergency—doing nothing is not an option.”

Action on the bill moves to the Senate where the measure cleared the Health, Education, Labor and Pensions Committee on Sept. 7 by unanimous vote.President Obama has pledged to sign a bill reauthorizing the CAA this year. The CDC has determined that the incidence of autism in America has jumped to 1 in 110 children, and 1 in every 70 boys.

CARA would authorize a total of $693 million on continued biomedical and treatment research on autism and require further development of an overall strategic plan for the intensification, expansion and better coordination of federal efforts designed to help persons with autism and their families. The fight for CARA in the Senate has been led by Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY).

The Combating Autism Act of 2006 was signed into law on December 19, 2006 by President George Bush following a nearly unanimous Congressional vote. The CAA made a clear statement by the U.S. government on the public health emergency posed by the growing prevalence of ASDs, and the lack of adequate research, effective treatments, and services to address this urgent and growing crisis.

Autism – Combating Autism Reauthorization Act to be voted on this evening by the House of Representatives

20 Sep

The Combating Autism Reauthorization Act is schedule to be voted on in the U.S. House of Representatives today. Amongst other things, the Act sets out authorizations for research funding for autism. This is also the law which authorizes the Interagency Autism Coordinating Committee (IACC).

Below is the announcement from The Arc. The link helps you find your congressperson’s phone number to call and ask them to vote (my congressman is voting for it).

GOOD NEWS AND ACTION NEEDED TODAY
URGE YOUR REPRESENTATIVE TO PASS THE COMBATING AUTISM ACT REAUTHORIZATION
Call Now
Enter Your Zip Code

September 20, 2011

We have good news! It appears that our advocacy over the past few weeks is starting to pay off!

We have just been informed (directly by Majority Leader Eric Cantor’s office) that the House leadership has put HR 2005, the reauthorization of the Combating Autism Act, on the “suspension calendar” today, Tuesday, September 20 at 6:30 p.m. This means that the House bill could be passed on a fast-track procedure without committee consideration. They need 2/3 of the Representatives present and voting for the bill to be passed under this procedure.

What Does the Combating Autism Act Do?

It provides funding to educate professionals about proper screening, diagnosis, and intervention for children with autism spectrum disorder and other developmental disabilities. It also funds autism research and surveillance. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is just one of the things that the CAA supports. Click here to learn more.

Why is This Important Now?

The Combating Autism Act will expire at the end of this month. If it is not reauthorized before then, people with autism and other developmental disabilities stand to lose appropriate diagnostic, early intervention, and support services.

Take Action

Call your Representative’s office TODAY before 6:30 p.m. EST. Click on the “Take Action” link and enter your zip code to locate your representative’s phone number.

What to Say:

“Please Vote for H.R. 2005, the reauthorization of the Combating Autism Act, when it comes up for a vote under “Suspension of the Rules” this evening.”

NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

20 Sep

The National Council on Disability (NCD) advices the U.S. government on many areas, including civil rights, diversity, employment, housing and education. The NCD has sent a letter to the U.S. Secretary of Education, Arne Duncan, on the subject of “No Child Left Behind” and waivers which allow schools to “shield” some children from the standards of NCLB.

The full letter can be found here.

NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

Following a meeting with U.S. Department of Education Secretary Arne Duncan on Monday, the National Council on Disability (NCD) sent the following letter to the Secretary, outlining policy recommendations for the NCLB waiver process:

September 19, 2011

The Honorable Arne Duncan, Secretary of Education
U.S. Department of Education
400 Maryland Avenue, SW
Washington, DC 20202

Dear Secretary Duncan:

It was a pleasure meeting with you and your senior staff to discuss priorities for students with disabilities within the forthcoming waiver applications for state flexibility under the No Child Left Behind (NCLB) amendments to the Elementary and Secondary Education Act. I’m writing as follow up providing you with a number of policy proposals we are putting forward to ensure that the significant progress that students with disabilities have made under No Child Left Behind is not lost as the Department pursues a waiver process. While the achievement gap between students with and without disabilities is still wide, No Child Left Behind’s disaggregation of data and requirement that schools make Adequate Yearly Progress for each subgroup of students has been a critical driver of reform.

We support the “flexibility for reform” model the Department has put forward in its vision for the waiver process. Having said that, it is imperative that the Department consider the needs of students with disabilities both with regards to what it should and should not provide in flexibility from NCLB’s accountability provisions and what it should require states and school districts to offer in return for the aforementioned flexibility.

With regards to flexibility, we urge the Department to ensure that the following provisions of NCLB are not eliminated or weakened through the waiver process:

Maintain NCLB’s requirement to disaggregate data and ensure a 95% participation rate in state assessments, disaggregated by subgroup population;
Maintain accountability for the Students with Disabilities subgroup and avoid the creation of additional rules allowing states and districts to shield certain populations of students from assessment; and
Maintain NCLB’s teacher quality provisions, particularly the requirement that special education teachers be highly qualified in any content area in which they provide direct instruction;

With regards to reform, we urge the Department to ensure that closing the achievement gap faced by students with disabilities is given sufficient emphasis through incorporating reform provisions which specifically relate to this population. As such, we encourage the Department to consider the following proposals for inclusion in the waiver process:

Eliminate the 2% rule allowing states and school districts to shield 2% of all students from their accountability systems through the use of modified assessments;
Reform the 1% rule to ensure that students who take the alternative assessment must first be assessed for and have access to Augmentative and Alternative Communication (AAC) technology;
Require states applying for waiver flexibility to instruct Local Education Agencies (LEA) to create an additional sub-group for the purposes of disaggregation of data when a sufficient numbers of students within an LEA fall into multiple sub-groups (i.e.: African-American students with disabilities, low-income students with disabilities, etc.);
Require states applying for waiver flexibility to set goals for increasing students with disabilities’ access to the general education classroom (as measured through IDEA State Performance Plan Indicator 5a); and
Require states to increase their use of research-validated educational methodologies, such as Universal Design for Learning and Response to Intervention;

NCLB has been a source of tremendous progress for students with disabilities, and we believe that if properly constructed, the waiver process can drive similar reform. We urge you to ensure that closing the achievement gap for students with disabilities is as great an area of emphasis for the Department as closing the achievement gaps faced by other minority groups. To quote from NCD’s 2008 report The No Child Left Behind Act and the Individuals with Disabilities Act: A Progress Report, “Teachers, administrators, and the community are becoming aware of what students with disabilities are capable of achieving if they are held to high standards and expectations .”

NCD’s Policy and Program Evaluation Committee Chair Ari Ne’eman stands ready to work with you and your staff on these matters. He can be reached at aneeman@ncd.gov or at our office phone number at 202-272-2004. Thank you for your consideration.

Sincerely,

Jonathan M. Young, J.D., Ph.D.
Chairman, National Council on Disability

‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan.

7 Sep

It is very interesting to see how disability is viewed in various cultures. Beyond academic interest, there is much we can all learn from each other. A recent paper looks at Down Syndrome and prenatal testing in Pakistan. The paper is ‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan.

To give you an idea of the study, here is the abstract:

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the ‘will of God’ was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more ‘scientific worldview’ of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country.

65 people were given cards with a number of questions and asked to sort them into a grid provided:

The method requires participants to consider and respond to a set of statements (the Q-set) using a ranking technique (a Qsort). Responding to the statements allows participants to express their viewpoint on things already written or said about the topic.

Example statements are: “A person with Down Syndrome will always be dependent on others” and “Children with Down Syndrome can achieve a great deal”. How they are sorted is then analyzed.

Some of the participants were removed from analysis. Of those remaining, some were parents and some were professionals:

Five Q-sorts were excluded from the analysis (4 parents, 1 health professional) due to concerns that these individuals had not understood the sorting procedure. The final sample of 60 comprised 26 parents of children with DS (14 mothers and 12 fathers), 28 health professionals/researchers (14 females, 14 males) and 6 female psychologists. The parents of children with DS reported occupations within the following groups: government service, domestic service, tailoring, teaching and ‘business’.

After analysis, the authors grouped the responses into three “accounts” of how Down Syndrome is viewed:

Account 1: a child with DS is ‘the will of God’ and a valued human being
Account 2: a child with DS is ‘the will of god’ but a burden to their family
Account 3: a person with DS is a genetic anomaly in a stigmatizing society

Even though “account 1” is classifies a person with Down Syndrome as “the will of god and a valued human being”:

Almost half of the parents in Account 1 expressed favourable attitudes towards abortion for the condition despite relaying positive experiences with their affected child. In the original UK based study no participant who had a close family member with DS expressed such views (Bryant et al., 2006).

Accounts 1 and 2 are from a mix of parents and professionals. Account 3 is from six professionals (two male doctors, a female doctor, a female psychologist and two women in related professions.)

The authors begin their conclusion with:

The findings of this study support those of previous research, for example, the stigma associated with having a disabled child in a Pakistani community, the co-existence of theological and biomedical explanations for disability, and the rejection of abortion on religious grounds for some, but not all Muslims.

If you will allow me, I will pull a couple of sections from the paper without added comment:

The view expressed by Item 20 (‘To know someone with DS enriches our understanding of what it is to be human’) was endorsed consistently across accounts. Participants’ comments suggested belief in a ‘higher purpose’ for the existence of people with DS; for example, “[It] makes us realize the true worth of being a normal human being” (22: female doctor, Account 1); “It reminds me of the unpredictability that is strongly associated with human life. It teaches the original meaning of what a Man is” (9: female doctor, Account 2); “Because it is something that makes us feel thankful to God” (10: female health professional, Account 3).

and

The origins of the word Islam refer to the act of submitting to the will of God, and a belief in the will of Allah as the determinant of the life-course is commonly held by Muslims (Murata & Chittick, 1994). Most participants in this study, with the exception of some of those exemplifying Account 3, strongly endorsed the item ‘If you have a child with DS it is because God chose you’ although interpretations of the will of God differed by account. Participants in Account 1 believed that Allah ‘sent’ children with DS as a blessing to parents, to be a source of learning and a means to develop a positive acceptance of His will. Participants in Account 2 expressed the view that Allah sent such children as a trial so that parents might learn forbearance and acceptance of God’s will through difficulty and sorrow.

Prof. Paul Shattuck: ASD outcomes in adulthood

2 Sep

Below is a presentation given at the last IACC (Interagency Autism Coordinating Committee) meeting. Prof. Shattuck has done some excellent work in recent years. He’s one of the people looking into the areas I find critical and underserved. If you want to hear about research which can have a real impact on the life of this generation of autistic youth, you should set aside the time to listen to this talk.

Prof. Shattuck is looking at the critical transition from school to adulthood. How well are autistic students making that transition (largely, not so well as it turns out). What are the factors that help make that transition successful? If we don’t look into these questions today the problems will only continue unresolved.


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