Disability Culture: Research in Motion

30 07 2012

I hope that you will enjoy this great new 22 minute long Disability Culture: Research in Motion video; feel free to share it and to comment on it.





Autism and Unemployment

24 07 2012

Here is a new release by NIMH. While I agree with the interpretations and implications of these data I wonder how many people with Autism are unemployed or under-employed due to stigma & discrimination….

Young adults with autism spectrum disorder (ASD) are less likely to have a job or be enrolled in any type of postsecondary education when compared to peers with a speech/learning impairment or learning disability, according to a study partially funded by NIMH. Published in the June issue of Pediatrics, the findings emphasize the need to improve transition planning for students with ASD before they leave high school.


Past studies on post-high school activities of youths with ASD were limited by having relatively few participants, lacking adequate diversity in the study population, or studying a narrow set of outcomes. As a result, it was unclear if those studies gave accurate descriptions of the ASD youth population as a whole, and if so, how broadly any findings could be applied.

Using nationally representative data from the National Longitudinal Transition Study-2External Link: Please review our disclaimer., Paul Shattuck, Ph.D., of Washington University, and colleagues assessed the activities of about 1,900 youths identified as having autism, speech/language impairment, learning disability, or mental retardation between the years 2007-2008. Data were provided by the youths’ parents or guardians or from the youths themselves if they were able to understand and answer the survey questions.

All participants had previously received special education services and were no longer in high school.

Results of the Study

Compared to youths in other disability categories, those with ASD were less likely to have a job after high school. Youths with ASD were also less likely to be enrolled in any type of schooling than youths with speech/learning impairment or learning disability, but more likely than youths with mental retardation.

In the first 2 years after leaving high school, youths with ASD were at significant risk of being completely disengaged, meaning to not be employed or in any postsecondary education.

The participation rates, with rounded percentages, are summarized in the table below:

Disability Category

Youth is involved in…


Speech/Learning Impairment

Learning Disability

Mental Retardation

Any 2- or 4-year college*





Any paid employment





No education or employment





*Additional data on youths’ participation in vocational or technical education showed a similar distribution.

Youths from low-income families were much more likely to become disengaged, regardless of the severity of their disability. More impaired youths were also at greater risk of disengagement.


The results indicate that young adults with ASD experience unique challenges in finding work or enrolling in appropriate educational opportunities after leaving high school. In a related paper, also partially supported by NIMH funding, Dr. Shattuck noted that “the evidence base on services for adults with ASD is inadequate for informing policy and program decisions to meet the needs of this growing population.”

In this context, the researchers emphasized the need to improve transition planning for youths with ASD or other special education needs as they prepare to leave high school.

What’s Next

According to the researchers, as more and more children are diagnosed with ASD, the demand for specialized adult services, jobs, and education will also continue to grow. Supporting targeted initiatives such as JobTIPS and further research on how to reduce or prevent disengagement will help inform efforts to better serve this population.


Shattuck PT, Narendorf SC, Cooper B, Sterzing PR, Wagner M, Taylor JL. Postsecondary Education and Employment Among Youth With an Autism Spectrum Disorder. Pediatrics. 2012 Jun;129(6):1042-9. Epub 2012 May 14. PubMed PMID: 22585766; PubMed Central PMCID: PMC3362908.

Shattuck PT, Roux AM, Hudson LE, Taylor JL, Maenner MJ, Trani JF. Services for adults with an autism spectrum disorder. Can J Psychiatry. 2012 May;57(5):284-91. PubMed PMID: 22546060.

Lunatic Asylum — 2012

14 07 2012

One of my main professional missions is to reduce the stigma attached to psychiatric treatment. I believe that while mental health providers do not have a cure to psychiatric illnesses they can enhance rehabilitation, recovery and social inclusion of people with psychiatric illnesses. I also believe that in order to reduce stigma there is a need to stop the non-scientific body-mind separation and to promote one treatment system to all persons with health conditions in Israel, including people with psychiatric illnesses. And I believe that when the public health system allows cases of neglect and inhumane conditions for people in psychiatric institutions stigma will never end.  This sad and disturbing article illustrates (again) the inexcusable and unbearable situation of a psychiatric hospital in Israel. Dear policy makers, it is time to close this psychiatric hospitals and other and to open psychiatric departments in general hospitals. This is no less important than the nuclear threat or any other burning issue in the Israeli society!

Good week for all of us.



חדר קר ומנוכר, בלי מדף או שידה. ארכיון  (צילום: קובי קואנקס)                              מרצפות התרוממו לאחר הזנחה של שנים. ארכיון   (צילום: גדי דגון)             הזנחה בכל פינה. מקלחת באברבנאל. ארכיון  (צילום: קובי קואנקס)

“Please hear this: There are not ‘schizophrenics’, there are people with schizophrenia.”

10 07 2012

Here is another fascinating story of a person with a health condition and disability. In this video by TED, Elyn Saks , a mental health law scholar and writer,  speaks for the rights of mentally ill people. In 2007, deep into her career, Saks dropped a bombshell–her autobiography, The Center Cannot Hold. In it, she reveals the depth of her own schizophrenia, now controlled by drugs and therapy. Clear-eyed and honest about her own condition, the book lent her new ammunition in the quest to protect the rights and dignity of the mentally ill. Thank you Namma for recommending this interesting lecture!

To watch and hear this lecture click HERE 

A silver lining to everything in life…

5 07 2012

Following my previous post I received an email from Elaine Benton, an incredible woman, that shared her personal experience with a Gaucher disease and Parkinson disease.  I wish to share her story with you and to encourage you to visit her amazing blog.  Thank you so much Elaine for your inspiration!

‘Writing as therapy’


by Elaine Benton

I was born with Gaucher disease, a rare disorder, caused by a genetic mutation from both my parents, resulting in a deficiency of a specific enzyme (glucocerebrosidase) in the body. The missing enzyme affects the liver, spleen, bone marrow; a patient can suffer severe bone pain, bone deterioration in particular damaging joints, and various additional symptoms such as bleeding and anemia.

I was diagnosed at the age of 5; little was known about this disease back then, and the prognosis looked grim. The only way of testing for Gaucher in those days was a painful sternum puncture performed under general anesthetic. The doctors felt that a child with Gaucher in my condition with an enlarged spleen would not live much past puberty!

I starting writing stories and poems when I was quite young, expressing myself on paper, which I now realise, was therapeutic, but at the time I simply enjoyed it. I grew up, finished school, started working, and married a wonderful man. I became pregnant and after a normal uneventful pregnancy, I gave birth to a healthy baby. I am now 49 years old; I guess those doctors who gave such a poor prognosis back in 1968 were very wrong. Suffering a chronic rare disease had a distinct effect on me, moulding me into the person I am today. I was never afraid of dying and as a child, believing I didn’t have very long to live, gave me the ability to enjoy every moment I have, no matter where I am, or what I am doing. I grab life with both hands and make the most of it. I have a strong fighting spirit and my sense of humour remains intact.

Twenty two years ago, I met Professor Ari Zimran, who specializes in Gaucher disease and it was an unforgettable moment. Just seeing the small simple sign that said ‘Gaucher Clinic’ was an extraordinary feeling. For the first time in my life, I sat before someone who knew about Gaucher disease; understood what I had been through, had advice and information to offer. Finally I had a ‘place’ to go and a knowledgeable doctor who would take care of me. After years of feeling isolated; no treatment or information, no support group, left in the hands of people who had never heard of Gaucher disease, I can’t express enough, the gratitude I feel towards this Professor for deciding to make Gaucher disease his life’s work. Twenty-one years ago, when the first medicine became available I started enzyme replacement therapy by infusions, initially at the hospital, but thankfully, ‘home treatment’ was eventually put in place improving the patient’s quality of life, by not spending countless hours in hospital on a regular basis.

As if suffering a rare chronic disease was not enough, five years ago, at the age of 44, I was diagnosed with Parkinson’s disease. My life became very difficult indeed now struggling with two diseases.

In 2011, I wrote a collection of poems which was made into a book about living with Gaucher and Parkinson’s. For me it was very therapeutic in a cathartic sense, but what was even more astounding; I found others suffering chronic disease could relate to my poems. From personal experience I’ve written with stark honesty and humour, something that neither patients nor doctors have read before which has captured attention world-wide. I have poured my heart and soul into this book, giving a fresh perspective from the patient’s view.

My book gives doctors the opportunity to understand completely a patient’s story, not merely medical facts but the emotional side of suffering a rare disease; how a patient really feels. Today we realise there is a link between physical medical issues and the emotional attitude. What started as merely a few poems has spiraled into an entire project, resulting in me writing a daily blog http://elainebenton.blogspot.com/ on wide-ranging topics sufferers can relate to, letting them know they’re not alone in their daily struggles. People around the world are reading my blog and contacting me, and I reply personally to each one. I have been speaking at various organisations, groups and to student doctors, for I believe there is need for education and greater awareness heard directly from patients. I had the great opportunity of being invited to give an oral presentation in June 2012 at The First International Congress of Narrative Medicine and Rare Diseases in Rome, and hopefully will be speaking in London in October 2012.

This entire project has given my life purpose, keeping busy, making me feel I have something of value to contribute which is highly important in sustaining me; probably the best medicine I could have received. My book has become of interest to doctors; encouraging empathy, and understanding better those who suffer chronic disease, which ultimately benefits both doctor and patient.

Although my life is not easy suffering Gaucher and Parkinson’s, there is a silver lining to everything in life. You’ve just got to know how to see it! No matter what disease a patient may have, it’s the state of mind that counts. It’s very easy to fall into depression and wallow in self-pity, but I advise being cheerful and putting a smile on your face, making the best out of a bad situation. I am very fortunate to have a supportive husband and family around me, and couldn’t wish for better medical care. So despite adversity, I have a lot to be thankful for. I hope that more doctors adopt narrative medicine as an additional valuable tool, helping patients cope better with ill health and that it becomes an integral part of medical care.