In our print magazine this month, Hanna Rosin tells the story of her son Jacob's diagnosis with Asperger syndrome, in the context of the psychiatric community's recent change in the definition of the disorder to part of what's now known as autism spectrum disorder.
We received a lot of thoughtful responses from readers who have experience with the disorder in their own lives, themselves or their families, about how the diagnosis has affected them, and what the changes in definition mean to everyone.
Months after our son was diagnosed, the label officially disappeared. And that turned out to be a good thing.
In January 2013, a psychologist diagnosed our 10-year-old son, Jacob, with Asperger’s syndrome. Four months later, the American Psychiatric Association declared that Asperger’s was no longer a valid diagnosis, and removed it from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The about-face stung, not least because my husband and I had procrastinated for so long before having Jacob evaluated. Many parents would have been on the case much earlier. Our son, after all, was growing up during the years when Asperger’s—officially added to the DSM in 1994—was assuming the status of a signature disorder of the high-tech information age. In 2007, the year Jacob turned 4, a pair of Asperger’s memoirs arrived on the New York Times best-seller list. Their authors accomplished what those with the label weren’t supposed to be able to manage: they vividly shared the view from within, and helped to define the type. John Elder Robison’s Look Me in the Eye and Daniel Tammet’s Born on a Blue Day introduced the world to two eccentric but also enviable minds, one gifted with machines and the other with numbers.
The term Asperger’s was becoming shorthand for hyper-focused, often precocious talent and a socially awkward personality—a potential lonely misfit or even, as Nora Ephron once wrote, a “prick,” the kind of guy who might cook up a social-media site in his dorm room to take revenge on some girl who had spurned him. Who needed all that baggage? Not us, I figured, and not Jacob, though it was easy enough to spot the symptoms, starting with his very early and intense obsession with letters, which he seemed to relate to more easily than he did to his peers. Several years later, he was deep into programming languages and still having trouble getting on anybody else’s wavelength. This was obvious to us. What, we asked ourselves at the time, could a label teach us about our son that we didn’t already know?
In our first year in Washington, our son disappeared.
Just shy of his 3rd birthday, an engaged, chatty child, full of typical speech — “I love you,” “Where are my Ninja Turtles?” “Let’s get ice cream!” — fell silent. He cried, inconsolably. Didn’t sleep. Wouldn’t make eye contact. His only word was “juice.”
I had just started a job as The Wall Street Journal’s national affairs reporter. My wife, Cornelia, a former journalist, was home with him — a new story every day, a new horror. He could barely use a sippy cup, though he’d long ago graduated to a big-boy cup. He wove about like someone walking with his eyes shut. “It doesn’t make sense,” I’d say at night. “You don’t grow backward.” Had he been injured somehow when he was out of our sight, banged his head, swallowed something poisonous? It was like searching for clues to a kidnapping.
After visits to several doctors, we first heard the word “autism.” Later, it would be fine-tuned to “regressive autism,” now affecting roughly a third of children with the disorder. Unlike the kids born with it, this group seems typical until somewhere between 18 and 36 months — then they vanish. Some never get their speech back. Families stop watching those early videos, their child waving to the camera. Too painful. That child’s gone.
Dr. James Coplan, M.D. (www.drcoplan.com) is the owner of the Neurodevelopmental Pediatrics of the Main Line, PC and a Clinical Associate Professor of Child Psychiatry - University of Pennsylvania School of Medicine.
The webinar will discuss:
Most students with Autism, Asperger’s Syndrome and related communication challenges are visual learners! This observation has tremendous implications. Capitalizing on their strengths, the use of visual strategies alters many social, communication, and educational challenges. This program will demonstrate effective ideas for using a range of low tech to high tech visual tools, including video and tablets like iPads and Apps, to help students organize their lives, significantly reduce behavior problems, and improve student successful participation. This program will define the need, discuss training, and demonstrate many practical ideas for both special and regular education settings.
October 15th - Great Falls
October 16th - TBD
October 17th - Billings
Researchers with the University of California — Davis MIND Institute and University of California, Los Angeles (UCLA) found that close to half of the younger siblings of children with autism spectrum disorder (ASD) develop in an atypical fashion.
They found that 17 percent developed ASD and another 28 percent showing delays in other areas of development or behavior.
. Based on the examination of a large health insurance database based in Taiwan, researchers identified over 2000 preschool children diagnosed with asthma – a chronic inflammatory disease affecting the airways – and compared them with a non-asthmatic control group, looking for any subsequent evidence of a psychiatrist diagnosed autism spectrum disorder label (based on ICD-9 criteria) up to 8 years later.
They reported that contrasted with an autism diagnosis rate of 0.7% among the non-asthmatic control group, the prevalence of autism in the asthma group was 1.3%, a statistically significant difference. Further, when controlling for various other potentially influential variables such as gender, where a person lived (urban or rural) or the presence of other comorbid allergic diseases, Tsai and colleagues reported that the risk of autism among children with asthma was over twice as much as in non-asthmatics.
Aripiprazole, one of two autism drugs approved by the U.S. Food and Drug Administration to treat irritability in people with autism, may be in the long run for some children, reports a study published in the January issue of the Journal of Clinical Psychiatry.
When taken for eight weeks or less, aripiprazole quiets tantrums, stabilizes rapid mood swings and abates self-injuring behaviors in children with autism. But the benefits of this antipsychotic drug can fall off after several months, according to the new study. Aripiprazole is the second-most-prescribed drug in the U.S. for both children and adults with the disorder.
Studies have shown that autism is a largely stable condition. It’s rare for children to outgrow a diagnosis of autism, and a 2012 study found that in more than 80 percent of children with autism, 2. Researchers have also studied autism-like traits, such as social aversion and repetitive behavior, in the general population, and found that these characteristics tend to remain constant as children age3.significantly over time
But little research has explored why autism behaviors vary so little over the course of development. Is it because the genes that govern the behaviors are expressed stably across the lifespan? Or because environmental factors that influence the traits are constant?
Rite Care will host a full day seminar suitable for those working with children exhibiting the following challenges:
Autism Spectrum Disorders, Aspergers, Oppositional Defiant & Pervasive Developmental Delays.
Morning - This presentation will discuss Applied Behavior Analysis (ABA) and how it relates to teaching students with
an autism spectrum disorder. It will focus on teaching specific skills, enhancing motivation, and generalization
training. A step by step demonstration will be presented using real life examples. Modifications will be
explored that allow this particular program to be effective with students significantly challenged with autism,
as well as those students with Aspergers Syndrome. Because of the nature of this presentation, a question
and answer period will be provided.
Afternoon - This presentation will focus on the ways to determine the function of inappropriate behavior in individuals
within the autism spectrum. It will discuss ways to develop a more effective and efficient way to determine
the function of behavior during a Functional Behavior Assessment (FBA). It will explore the function of behavior
and how it effects and relates to the FBA process and the design of behavior reduction plans. Dr. Ball
will also discuss the current limitations of determining function of behavior and the profound effect this has
on programming. A hand’s on portion of the presentation will walk the participants through the use of specific
research based strategies in the classroom and beyond.
Licensed/certified participant $199 each.
Classroom Aides /Para-professionals $100 each.
School Districts & Organizations sending more than 5 participants will receive a 10% discount.
Please see the attached flyer for more information.
Friday, April 4, 2014
The Mansfield Center
2900 12th Avenue, Billings
0 am: Continental breakfast and networking
9:00 am: The Power of Peers: Peer Strategies to Support Appropriate Behavior and Social Development for Young Children with Autism ( Edward "Ted" Bovey, MA - Associate Director, Positive Early Learning Experiences Center - School of Education and Human Development - University of Colorado Denver)
12:00 pm: Working Lunch - Cont’d - Wrap Your Head Around This: How to Get Families to Commit to the Wraparound Process (Mary Grealish, M. Ed., Community Partners, Inc., Pittsburgh, PA)
1:00 pm: The Power of Peers: Peer Strategies to Support Appropriate Behavior and Social Development for Young Children with Autism - Cont’d
4:00 pm: Adjourn
Register online at: https://www.surveymonkey.com/s/FFZ9RRH
For further information, please contact Tessa Slominski (Office: 406.587.1181; Cell: 406.600.2747; Email: email@example.com). Seating is limited.
Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum. Stephen M. Shore, Ed. Autism Asperger Publishing Co. 2004
Autism Every Day: Over 150 Strategies Lived and Learned by a Professional Autism Consultant with 3 Sons on the Spectrum. Alyson Beytien. Future Horizons, Inc. 2011
Can I tell you about Asperger Syndrome? A Guide for Friends and Family. Jude Welton. Jessica Kingsley Pub. 2003
Freaks, Geeks, & Asperger Syndrome: A User Guide to Adolescence. Luke Jackson. Jessica Kingsley Pub., 2002
How to Be Yourself in a World That's Different. An Asperger Syndrome Study Guide for Adolescents. Yuko Yoshia. Jessica Kingsley Pub. 2005.
Thinking Person's Guide to Autism. What you really want to know about autism: from autistics, parents, and professionals. Shannon Des Roches Rosa, et al. Ed. Deadwood City Publishing, 2011.
Voices from the Spectrum. Parents, Grandparents, Siblings, People with Autism, and Professionals Share Their Wisdom. Cindy N. Ariel & Robert A. Naseef, Ed. Jessica Kingsley Publishers, 2006.
This month, researchers with Philadelphia’s Farber Institute of Neuroscience published a ground-breaking study in the Journal of Autism and Developmental Disorders. This study is among the first scientifically rigorous clinical trials to assess the effectiveness of occupational therapy using sensory integration (OT-SI) for improving the ability of children with autism to participate meaningfully in daily life. [Read our news story on this study’s findings here.]
The new study is important because it used a randomized, controlled trial to assess OT-SI intervention while assuring that it was delivered in a way that met all the characteristics of sensory integration intervention. It showed that children who received OT-SI in addition to their other autism treatments achieved greater improvements in their ability to function in daily life than did children who received the same standard autism treatments without OT-SI.
Unfortunately, OT-SI – which can change brain function – is sometimes confused with other sensory-based strategies that help calm individuals but don’t have long term effects. Examples of the latter include weighted blankets and compression vests.
New guidelines for defining autism spectrum disorders may reduce the number of diagnoses by almost one-third, according to new research from Columbia University.
A review of relevant literature and data, published in the Journal of Autism and Developmental Disorders, raises questions about the future of children who have developmental delays, but no longer meet criteria for an autism diagnosis.
Kristine M. Kulage, who led the review, said the new guidelines, issued last year by the American Psychiatric Association, may leave thousands of children in the U.S. without an autism diagnosis needed to qualify for medical benefits and social services.
The systematic review by Kulage’s team at the Columbia University School of Nursing found a 31 per cent decrease in autism spectrum disorder diagnoses using the new version of the Diagnostic and Statistical Manual of Mental Disorders, compared to the number of cases that would have been diagnosed under the previous version.
Under DSM-5, there was a decrease in autistic disorder diagnoses of 22 percent, compared with the previous edition of the manual, the Columbia review found. There was also a decrease of 70 percent in diagnosis of pervasive development disorder. Asperger's diagnoses also declined, but the rate was not statistically significant, the review found.