Archive

Archive for January, 2012

The Changing Definition of Autism: Critical Issues Ahead

January 20, 2012 76 comments

Posted by Autism Speaks Chief Science Officer Geri Dawson, PhD.

Many in our community are understandably concerned that a planned revision of the medical definition of autism spectrum disorder (ASD) by the American Psychiatric Association (APA) will restrict its diagnosis in ways that will prevent many persons from receiving vital medical and social services.

Before I catch you up on some of the details behind this revision, let me first say that although the proposed changes have a solid scientific rationale, we at Autism Speaks are likewise concerned about their effect on access to services. It is crucial that these changes don’t result in discrimination against people who are struggling with autism symptoms.  As the APA moves forward in formalizing the new definition, we urge that this issue be kept at the forefront of the discussion. As the changes are implemented, scientists, families and providers will all need to carefully monitor its impact on those affected by all forms of ASD. The bottom line is this: We must ensure that all those who struggle with autism symptoms get the services they need.

Now let me provide some background.

The APA is currently completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which will be published in 2013. The DSM is the standard reference that healthcare providers use to diagnose mental and behavioral conditions. As such, it influences availability of treatments as well as insurance coverage.

An expert panel appointed by the APA has proposed that the new version of the DSM change the current definition of ASD, in part because of shortcomings in how it is currently used for diagnosis. The new definition would do three things. First, it would eliminate the previously separate categories of Asperger syndrome and pervasive developmental disorder, not otherwise specified (PDD-NOS) from the diagnostic manual. Second, it would fold these disorders, together with “classic” autism, into the single category of ASD. Finally, it would change the criteria for diagnosing ASD.

Under the current definition, a person can qualify for an ASD diagnosis by exhibiting at least 6 of 12 behaviors that include deficits in social interaction, communication or repetitive behaviors. Under the proposed definition, the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors. The APA has also proposed that a new category be added to the DSM – Social Communication Disorder. This would allow for a diagnosis of disability in social communication without the presence of repetitive behavior.

Based on a recent study, some experts are suggesting that many individuals who currently meet the criteria for ASD, especially those who are more cognitively capable, would no longer meet criteria for ASD. If so, the new criteria would result in discrimination against people who are more cognitively capable.  We are concerned about this and will do all we can to ensure that all people who are struggling with autism symptoms retain the services they deserve.

As these new criteria are rolled out over the coming year, Autism Speaks’ position is that it will be vitally important to collect meaningful information on how the change impacts access to services by those affected by autism symptoms. Further policy changes may be needed to ensure that all persons who struggle with autism symptoms get the services they need.

It is important to keep in mind that this revision in the medical definition of ASD is not just an academic exercise. These changes in diagnostic criteria will likely have important influences on the lives of those in our community who critically need services.

[Editor's note: Please see the Autism Speaks policy statement on the DSM-5 revisions and a related FAQ here.]

Tune-in today to hear Autism Speaks’ leadership discuss the recently released analysis of the DSM-5, to be published in 2013, and hear about its potential implications for individuals to receive an autism diagnosis and appropriate services.

  • Then, please join us for a live web chat at 3 pm Eastern with Autism Speaks Chief Science Officer Dr. Geraldine Dawson and Vice President of Family Services Lisa Goring – click on the tab on the Autism Speaks Facebook page to join in!
You can read the full Chat Transcript here.

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

Tune in TODAY for Autism Speaks’ Analysis of the DSM-5

January 20, 2012 19 comments

Tune-in today to hear Autism Speaks’ leadership discuss the recently released analysis of the DSM-5, to be published in 2013, and hear about its potential implications for individuals to receive an autism diagnosis and appropriate services.

Read Geri Dawson’s blog post about the DSM-5, The Changing Definition of Autism: Critical Issues Ahead.

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

Weekly Whirl – Focus on Sevenly!

January 20, 2012 2 comments

If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.

This week we have been partnered with Sevenly, an awesome organization whose mission is, “To raise capital and awareness for the world’s greatest causes.” The Autism Speaks campaign set the record for the most funds raised on the first day! We would like to send a big THANK YOU to all of those who made it possible!

Don’t worry though, you still have until Monday, January 23 to get in on the action! Just visit http://sevenly.org/ and grab some swag!

Autism America Radio – Saturday January 21st

January 20, 2012 1 comment

Autism America Radio welcomes special guests, author and athlete Rodney Peete and attorney Valerie Vanaman.  

Join hosts Matthew Asner and special guest host, author Monica Holloway for two hours of talk and interviews this Saturday 6:00 to 8:00 PM ET on Sirius/XM Family Talk Channel 131! 

People wishing to participate should call 800-679-7650 During the show or Tweet their questions to @Autismamericar. Listen online at http://www.live365.com/stations/autismamerica?play or as a podcast on iTunes! You can also visit Autism America Radio on Facebook!

Autism in the News – 01.20.12

January 20, 2012 1 comment

New Definition of Autism Will Exclude Many, Study Suggests (The New York Times)
Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests. Read more.

Kansas City girl with autism found safe (Kansas City, Kan.)
An autistic 15-year-old girl Kansas City girl who had been missing overnight has been found safe. Read more.

Autism Bill on the Fast Track in General Assembly (WHSV.com)
The General Assembly votes today on a bill that could mean better insurance for children with autism. The law passed last year, but got held up behind state rules. Today’s vote will be final passage. The legislation means that parents do not have to pay out of pocket for early treatment of autism. Read more.

Battling autism: Lawmaker wants to require insurance coverage (Layton, Utah)
Five-year-old Jaden Petersen focuses intently as he traces the dotted outlines of numerals on a piece of paper. Therapist David White sits next to him at a low table. Read more.

Autism Fundraiser For ‘Sensory Home Makeovers’ Set For Feb. 4 (West Hartford, Conn.)
A silent auction to raise money for “sensory home makeovers” to benefit children with autism and their families has been rescheduled for Feb. 4. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Categories: Autism in the News Tags: ,

What is epigenetics, and what does it have to do with autism?

January 20, 2012 11 comments

This week’sGot Questions?” answer comes from Alycia Halladay, PhD, Autism Speaks director of research for environmental sciences

If you’ve been following autism research in recent years, you have probably read—many times—that familial, or inherited, risk is seldom the whole picture. A few inherited genes are sufficient by themselves to cause autism. But most so-called “autism genes” only increase the risk that an infant will go on to develop this developmental disorder. As is the case in many complex diseases, it appears that autism often results from a combination of genetic susceptibility and environmental triggers.

This is where epigenetics comes in. Epigenetics is the study of the factors that control gene expression, and this control is mediated by chemicals that surround a gene’s DNA. Environmental epigenetics looks at how outside influences modify these epigenetic chemicals, or “markers,” and so affect genetic activity.

It is important to remember that scientists use the term “environment” to refer to much more than pollutants and other chemical exposures. Researchers use this term to refer to pretty much any influence beyond genetic mutation. Parental age at time of conception, for example, is an environmental influence associated with increased risk of autism, as are birth complications that involve oxygen deprivation to an infant’s brain.

Because epigenetics gives us a way to look at the interaction between genes and environment, it holds great potential for identifying ways to prevent or reduce the risk of autism. It may also help us develop medicines and other interventions that can target disabling symptoms. We have written about epigenetics previously on this blog (here and here). So in this answer, I’d like to focus on the progress reported at a recent meeting hosted by Autism Speaks.

The Environmental Epigenetics of Autism Spectrum Disorders symposium, held in Washington, D.C. on Dec. 8, was the first of its kind. The meeting brought together more than 30 leaders in autism neurobiology, genetics and epidemiology with investigators in the epigenetics of other complex disorders to promote cross-disciplinary collaborations and identify opportunities for future studies.

Rob Waterland, of Baylor College of Medicine in Texas, described epidemiological studies and animal research that suggested how maternal nutrition during pregnancy can affect epigenetic markers in the brain cells of offspring.

Julie Herbstman, of Columbia University, described research that associated epigenetic changes in umbilical cord blood with a mother’s exposure to air pollutants known as polycyclic aromatic hydrocarbons (PAHs). PAHs are already infamous for their association with cancer and heart disease.

Rosanna Weksberg, of the Hospital for Sick Kids in Toronto, discussed findings that suggest how assisted reproductive technology may lead to changes in epigenetically regulated gene expression. This was of particular interest because assisted reproduction has been associated with ASD. Taking this one step further, Michael Skinner, of Washington State University, discussed “transgenerational epigenetic disease” and described research suggesting that exposures during pregnancy produce epigenetic changes that are then inherited through subsequent generations.

Arthur Beaudet, of Baylor College of Medicine, discussed a gene mutation that controls availability of the amino acid carnitine. This genetic mutation has been found to be more prevalent among children with ASD than among non-affected children, suggesting that it might be related to some subtypes of autism. Further study is needed to follow up on the suggestion that dietary supplementation of carnitine might help individuals with ASD who have this mutation. Caution is needed, however. As Laura Schaevitz, of Tufts University in Massachusetts, pointed out, studies with animal models of autism suggest that dietary supplementation may produce only temporary improvements in symptoms of neurodevelopmental disorders.

So what does this all mean for research that aims to help those currently struggling with autism? The meeting participants agreed that the role of epigenetics in ASD holds great promise but remains understudied and insufficiently understood. For clearer answers, they called for more research examining epigenetic changes in brain tissues. This type of research depends on bequeathed postmortem brain tissue, and Autism Speaks Autism Tissue Program is one of the field’s most important repositories. (Find more information on becoming an ATP family here).

The field also needs large epidemiological studies looking at epigenetic markers in blood samples taken over the course of a lifetime. One such study is the Early Autism Risk Longitudinal Investigation (EARLI). More information on participating in EARLI can be found here.

Autism Speaks remains committed to supporting and guiding environmental epigenetics as a highly important area of research.  We look forward to reporting further results in the coming year and years.

Got more questions? Send them to gotquestions@autismspeaks.org.

Read more autism research news and perspective on the science page.


Learn More About January’s Home of the Month

January 19, 2012 1 comment

After we highlighted Farmsteads of New England as January’s “Home of the Month” on our new Housing Portal, we received many requests for more information about this housing initiative. For that reason, we asked its Founder and Executive Director, Deborah DeScenza, to blog about her experiences with her son, Andrew, and about how FNE got its start.

“What is going to happen to Andrew when he grows up?” I recall asking myself this question as I sat at my desk one night when my son was about 8 years old. Andrew had been diagnosed with autism years ago, and all of my focus and energy up to that point had been dedicated to working with his school to make sure he received the supports and services he needed there. But now I had a new concern: his long term future.

When I researched what services were available in our state, I found that there was basically only one model: adult foster care for residential services or competitive employment/volunteering/ “van therapy” during the day. I felt my son needed something different, so I started thinking about Andrew’s interests and needs, as well as his strengths and weaknesses. As Andrew grew older, it grew more and more difficult for me to take care of him alone. He was non-verbal, needed help with personal care, and he had developed insomnia and obsessive-compulsive tendencies that were very difficult to manage day in and day out. Andrew would need a staffed residence with 24-hour supervision and day services that would allow him to do activities that he could understand the meaning of. I also wanted him in a rural setting where he could safely expend his excess energy. It dawned on me that a farm might just be a wonderful place for him to live because it would provide him with the “room to roam” he needed without the worry of traffic on busy streets, and it would allow him to utilize his assets while minimizing the impact of his social limitations. But I also knew that we needed to ensure that he was not isolated and lonely.

Thus, I began to develop the idea of a farmstead that provides the opportunity for several people with autism (or other developmental disabilities) to live and work together in a supportive farming environment – an environment that gives these individuals the support they need to do meaningful work, to live a healthy lifestyle, and to develop genuine and long-lasting friendships. I also wanted a work environment that gives the staff the support they need in order to prevent the burn-out that is so prevalent in their field. I wanted them to have the chance to work as part of a team and to have help readily available if needed. So I developed a model in which the staff works in shifts as mentors to the individuals with autism – they live, work, and play alongside the farmers, modeling appropriate behaviors and interactions instead of simply supervising or coaching.

Today, after a lot of hard work, and some good fortune, our Farmsteads of New England consists of 6 residential buildings. Each one consists of four one-bedroom apartments surrounding a common room. In most cases, there are three individuals with autism or other developmental disabilities and one non-disabled mentor living in the building. We are able to provide essential supports to adults with a wide range of needs.  We have also focused on developing a good working relationship with the local community which benefits everyone involved.

Next, we hope to replicate our model throughoutNew Englandin the years to come. We have already started day services at a second farm inNew Hampshireand hope to add residential services there in the future. In my opinion, it makes sense to replicate a working model with the backing of an existing and successful organization, rather than force other families to start from scratch if they want a similar future for their child.

For more information about Farmsteads of New England, visit them here.

For more information about the new Autism Speaks Housing and Residential Supports Portal and tool kit, please click here.

In Their Own Words – A Moment in the Sun

January 19, 2012 11 comments

This ‘In Their Own Words’ is by J. Lorraine Martin. She digs deep through laughter and tears in her personal blog on life and motherhood at http://cheeselesspizza.blogspot.com.  She is the mother to three children, one of whom has autism.  She is a writer, graduate student, volunteer/mentor in the autism and refugee/immigrant communities.  

I’m standing on a tennis court in my neighborhood.

Despite trees baring no leaves, the weather belies the time of year as the sun warms our exposed arms.  I have an unlikely tennis partner by my side:  my 17-year-old autistic son. This was his idea today.  A breeze tickles through our hair, birds on a Southerly journey pause to sing, as if for us.

My other son–an avid tennis player capable of sending balls at a fast pace swooshing right by me before my eyes can barely register it–stands on the other side of the court, playing left handed so as to ease the pace of the game and give us a fighting chance.

We have playful rallies.  We work on helping my oldest son by my side call out “mine” or “yours.”  We laugh over mishits, and occasionally my youngest son can’t help creaming a ball at me.  I can’t help trying to return it with equal power, most often hitting the net and hoping I don’t tax my old lady joints too badly.

I ponder the present moment. I am playing tennis with both of my boys. No one is rushing the moment.  No one is embarrassed. No one is anxious.  There are no “scenes.”  My oldest son, who usually surveys his surroundings on heightened guard, seems like that layer of self protectiveness is not required on this day.  He has stepped outside, something he doesn’t do much in our neighborhood, as he prefers the security and comfort of home. Yet on this day he is standing calmly and happily in the sunshine by his own initiative.

My husband, our dutiful ball boy and resident coach, asks our oldest son:  “Why are you smiling so much?”

He answers,  “Because I’m so happy.”

We hit some more.  I feel comfortably wrapped in gratitude and joy.  At the end of our playing time, I hug each son for different reasons; heroes to me in their own unique way.

As my husband and youngest son want to play longer, I ask my oldest son if he would like to walk around to see the other courts, playground and pool closed for the winter.  Normally, he would want to leave and go back home to what feels most comfortable. On this day, he says, “Let’s walk.” And we do.  Strolling, peacefully taking in the view. We end our walk, viewing my husband and other son playing some more, as we stand on a higher platform looking down at them.

And then expectations begin to seep in.  “Maybe you might like to come up to the high school to watch your brother play sometime.”  “Well, maybe,” he answers.  I imagine him sitting in the stands with us; my heart yearns and hopes.  I then bring up that his yoga class will be resuming now that the holiday break is over.  An intruding bit of anxiety hits my son, “I’m not sure if I want to go back to yoga, Mom.”  He is recalling that the instructor had coughed the last time and how that bothered him.  I find myself wanting to say some sort of validating thought coupled with some problem solving advice as I feel yoga is good for my son to cultivate self-awareness and inner calm.  I don’t want him to discount all he loves about a person simply because they coughed as he sometimes tends to do.  I find a bit of sadness creeping into my heart.

And then I suddenly feel quite aware of myself.  Why am I clouding such a perfect moment—the calm and peaceful present—with expectations about the future?  Why would I allow such intrusions?  I switch back to what matters most:  this moment I’ve been given.

The sun.  The breeze gently whispering.  The crisp sound of my youngest son’s racket making contact with a ball as he plays tennis with his dad. My oldest son by my side, entirely calm, having just happily played tennis and taking a leisurely stroll with me.

He then puts his hand up for a minute to gesture for me to pause.  “Listen, Mom to the birds.”  And we stand together and hear their song.

He adds, “I feel so good inside.”  My boy’s song amongst the birds.  A mother’s spirit aloft and soaring.

We stand side by side gripping the iron rails of a fence, looking down at my husband and youngest son playing tennis. My emotions flow forth.  “Oh, Mom is crying,” my husband says with a smile on his face as he looks toward me with understanding.  My son by my side looks at me and offers, “Mom cries when she’s happy, but I only cry when I’m sad.”   My husband replies, “Why do you think she does that?”  He says, “Because she is proud of me.”

Autism in the News – 01.19.12

January 19, 2012 1 comment

Georgian Courts M.A. in Applied Behavior Analysis Addresses Growing Need (Lakewood, N.J.)
Georgian Court Universitys new masters program in applied behavior analysis is succeeding in meeting the needs of students and families struggling with autism as well the school districts and other institutions that serve those with autism spectrum disorders. Read more.

Red Devils for Donegal Challenge (UK)
United legends joined Irish actor and Boyzone member Keith Duffy to officially launch the annual Big Red Bike Ride challenge which will visit Donegal later this year for some very deserving charities. Read more.

Attitudes towards disabled more negative in past five years – report (Ireland)
People in Ireland’s attitudes towards those with a disability have become more negative in the last five years, according to new research out today. The National Disability Authority has said that attitudes have changed since they carried out a similar survey in 2006 which aims to provide evidence on the attitudes to disability among men and women in Ireland. Over 1,000 people were interviewed. Read more.

Fix to autism measure heads to full House (Times Dispatch)
Children with autism could have treatments covered by insurance by the end of this year under a measure that a House of Delegates committee passed this morning. Read more.

Boxing in aid of Dubai Autism Center (Dubai)
American kickboxer Bob ‘The Beast’ Sapp and UAE’s only professional boxer ‘Arabian Warrior’ Eisa Al Dah will be the main drawcards at the Dubai International Boxing Championship (DIBC) to be staged next month. Read more.


Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Categories: Autism in the News Tags: ,

Autism in the News – 01.18.12

January 18, 2012 Leave a comment

Mother of autistic boy levels charges of bullying at Malverne school (LI Herald)
Bullies at the Malverne middle school have kicked, taunted, chased and harassed autistic eighth-grader Joel Luna Menjivar, according to his mother, Ana, who called the Herald in a desperate attempt to get help. Read more.

Dubai boxing championship details revealed (Dubai)
The organising committee of the Dubai International Boxing Championship (DIBC) held a press conference today at the Dubai Sports Council; to reveal the details of the tournament. Read more.

Baking With a Twist: Felecia Rozansky’s Recipe to Help Autism (East Meadow Patch)
Fifteen years ago, East Meadow business owner Felecia Rozansky was looking at storefronts to open a new cookie shop, but when her son Eric was diagnosed with Autism, everything came to a halt. Read more.

Giving it back: Els’ off-course passions (CNN)
As one of the world’s most successful golfers, Ernie Els has got it all. The three-time major winner is famous for his sporting achievements, but he is giving a lot back to the game he loves and the country he cherishes. Read more.

A Lack of Autism Training (Advance)
To date, my graduate student extern (referred to as “student teacher” from here on out for the sake of convenience) has been with me for two weeks now. I’m hoping she has learned a lot so far, as I know I have learned things from her already. Having a student teacher really has caused me to do some self-reflecting on my own therapy and what I could be doing better to help my students. However, that is a blog topic for another day. Read more.

Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.

Categories: Autism in the News Tags: ,
Follow

Get every new post delivered to your Inbox.

Join 1,049 other followers

%d bloggers like this: