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Monday, September 30, 2013

Jake's Social Stories

From The Responsive Classroom

By Karen Poplawski
September 26, 2013

It's getting to be the time of year when teachers' efforts during the first weeks of school begin to pay off. With classroom routines becoming well-established, a blossoming sense of community, and teachers who've gotten to know the children they teach, school days begin to fall into a rhythm. Students are feeling settled in, engaged, and ready to take on new learning challenges.

It's also the time of year when students who need extra support start to stand out.

That was the case for a child I knew named Jake. Jake had autism and was non-verbal at the start of first grade, so we'd expected that routines might be a challenge for him. As it turned out, his strong processing skills and his teacher's skillful use of Interactive Modeling to teach procedures, plus lots of proactive reminding, led to a successful first few weeks.

However, as time went by, Jake's classmates needed fewer and less detailed reminders about everyday classroom routines, and Jake started to falter. With a class of twenty-five students and no assistant, his teacher tried to be proactive when she could, but she wasn't able to give Jake as much support as he needed.

Thankfully, at our school we had a great working group of adults who came together to think of other ways to assist Jake. The speech pathologist recommended social stories as a tool that might help Jake manage routines with less verbal direction. She explained that in social stories, each page pairs a picture of an action with a word or very short sentence describing it. These pages might be bound into a book or attached to a flip ring—or any format that makes it possible for the child to have the story at hand to review independently or read with an adult.

Jake's teacher lit up when she heard this idea. She immediately rattled off a list of routines that she could make into social story books for Jake and started thinking about which to make first. To begin, Jake had a "starting the day" book, a "visiting the bathroom" book, a "lining up" book, a "walking in the hall" book, a "lunch line" book, a "making a choice at recess" book, and a "going home" book.

These social stories followed the same steps she had shown during Interactive Modeling for each routine. To make them more meaningful, she used photos of Jake doing each of the steps for the illustrations. She put the books in a large zipper-top bag that stayed with Jake, and during the school day, when a routine was coming up, she'd pull out the appropriate book for Jake to review.

I still remember the thrill of hearing her describe how much having the social story books seemed to help Jake with classroom routines. She also noted that during self-selected reading time, Jake was choosing to read his social stories! (On a side note, later in the year, another beautiful thing happened related to this. The speech therapist used the books as she worked with Jake in his language development. As his verbal abilities emerged, some of the first words he uttered out loud were the steps to lining up that he'd learned from his book.)

The benefits of offering this extra support to Jake extended beyond him to encompass his classmates—and ultimately our whole school. In the classroom, as children showed an interest in Jake's books, their teacher was inspired to take photos of students doing other routines and used them to make a classroom collection of social story books.

Her description of that sparked a wonderful discussion among colleagues, which blossomed into a display of photos of students completing routines used in common areas of our school, such as the cafeteria and the playground.

So who is your Jake this year? What strategies can you use to support him or her? If the challenge involves remembering routines, perhaps social stories will help. Or, if managing transitions seems to be the issue, could you use a
personalized schedule chart like the one Candace Roberts described making for a child in her class?

What simple strategies have you used successfully with students who need more support? Please share your ideas by leaving a comment!

Alternative Treatments for Developmental Differences: A Chance to Hear From and Ask Questions of Three Top-Notch Practitioners

Presented by
The Boston Institute for the Development of Infants and Parents

Would you like to know more about alternative and complementary treatments some people and patients may be using?

The Boston Institute for the Development of Infants and Parents' board is hosting a half-day, afternoon "salon" for professionals, featuring a panel discussion  with a special group of practitioners working with children with developmental differences.

Dr. Nancy O’Hara, Dr. Lydia H. Knutson, and Dr. Laurence M. Hirshberg will each present their work, and there will be ample opportunity for questions and discussion.

When:   12:30 – 4:00pm Saturday, October 19, 2013

Where:  MSPP
                    (Massachusetts School for Professional Psychology)
                    One Wells Avenue, Newton, MA

This is by invitation only, and space is limited.

RSVP by October 5th to reserve a seat, by email to Lizzie McEnany at

The three panelists are:

Dr. Nancy O’Hara, M.D.

Biomedical Interventions: From A to Zinc: Dr. O’Hara is a board-certified pediatrician. Prior to her medical career, she taught children with autism. Dr. O’Hara graduated from the University of Pennsylvania School of Medicine, and earned a Master’s degree in Public Health from the University of Pittsburgh. She entered general private practice in 1993, and in 1998 began her consultative, integrative practice solely for children with special needs. She is a leader in the training of clinicians, in the U.S. and abroad. Her practice is in Wilton, CT.

Dr. Lydia H. Knutson

A Hop, Skip and a Jump - Why Biomechanical Injury Matters: Dr. Knutson received her Doctor of Chiropractic degree summa cum laude from the University of Bridgeport College of Chiropractic. After graduating, she trained with David Newton, D.C. in Wellesley, Massachusetts. His groundbreaking work with the Axial Stability Method is her greatest influence. She continues to expand this chiropractic method with specialized techniques developed by American, European and Australian energy kinesiologists.

Her collaboration with energy kinesiologists Charles Krebs, Ph.D., and Joy DelGiudice has opened remarkable doors for the advancement of chiropractic and Axial Stability Method. She is licensed in the states of Massachusetts and California, and is a member of the American Chiropractic Association, the Massachusetts Chiropractic Society, and the Educational Kinesiology Foundation.

She has attended many postgraduate seminars in Sacro-Occipital Technique, Activator Methods, Nutritional Response Technique, Educational Kinesiology, and the infant reflex work of Dr. Svetalana Masgutova. She sits on the Board of Directors for The Educational Kinesiology Foundation.

Laurence M. Hirshberg, Ph.D.

EEG Biofeedback: Promising Treatment Option for Brain Based Troubles: Dr. Hirshberg is a licensed clinical psychologist. He founded and directs The NeuroDevelopment Center and serves on the faculty of the Department of Psychiatry and Human Behavior of the Brown University Medical School as Clinical Assistant Professor. Specializing in work with neurodevelopmental disorders for over 20 years, he consults and trains educators and clinicians across New England. Dr. Hirshberg has published and presented in many areas of clinical psychology and child development.

Sunday, September 29, 2013

Science/AAAS Google+ Hangout on the Adolescent Brain Featuring NIMH’s Jay Giedd, M.D.

From NIMH - The National Institute of Mental Health

September 27, 2013

Why do teens engage more in risky and hazardous behavior? Rates of death by injury between ages 15 to 19 are about six times that of the rate between ages 10 and 14. Crime and alcohol abuse rates are also high relative to other ages.

Although genes, childhood experience, and environment all shape a young person’s behavior, scientists have also discovered significant changes that the brain undergoes during adolescence. Research shows that the brain does not look like that of an adult until the early 20s.

As chief of the Unit on Brain Imaging in the Child Psychiatry Branch at the National Institute of Mental Health (NIMH), Jay Giedd, M.D. has studied the development of the adolescent brain for more than 20 years.

Dr. Giedd participated in a live Google+ Hangout with Science/AAAS on September 26, 2013, discussing the mysteries of the adolescent brain and what makes it unique.

By about 11 or 12 years old, a child's brain is nearly as large as it will ever be, but its development is far from finished. From early adolescence until the mid-20s, the dramatic reshaping of connections between brain cells sculpts regions involved in planning, organization, and many other cognitive functions that we associate with "growing up."

This may make teens more vulnerable to psychiatric disorders that often arise during adolescence, such as schizophrenia, but it may also present an exciting chance to shape the brain long-term. What do we know about these risks and opportunities? And how can discoveries about the teen brain inform how we parent and educate our children?

Saturday, September 28, 2013

Five Signs Your Teen Needs Mental Health Treatment


By Jared Friedman 
September 22, 2013

Teens go through emotional ups and downs all the time. Hormones are changing, life can seem overwhelming, and without much life experience, a young adult can feel misguided. When parents are busy working, or a natural separation from family occurs, teens may turn to friends instead of parents.

Peer support can be helpful for certain issues. But when the symptoms of a mental illness are present, more than a good friend is needed.

The problem is, teens may not understand what the feelings they experience mean. As a parent, it’s important to stay connected, so you notice changes or any symptoms of a mental illness in your child.

Mental illness includes depression; anxiety; bipolar disorder; schizophrenia; borderline personality disorder; post-traumatic stress disorder (PTSD); attention-deficit disorder (ADD); attention-deficit hyperactivity disorder (ADHD) and other disorders that can interfere with your teen’s daily life.

In an effort to self-medicate — to control the symptoms of the undiagnosed and untreated mental illness — a teen without help may turn to drugs, alcohol, or eating disorders to feel better, to escape, to numb out, or to feel in control.

Below are some ways to tell if your teen may need mental health treatment:

  • Mood swings. How can you decipher a moody teen from a true set of mood swings that indicate mental illness? You know your child better than anyone else. Trust that you can recognize a shift in mood that is out of character for your son or daughter.
  • Behavioral changes. The same thing goes for your child’s behavior. Of course behavioral choices change as your teen gets older, but if your son or daughter is presenting as a different person to you, this may indicate a mental illness or substance abuse.
  • Consequences in school and among friends. A mental illness can distract from concentration, which can affect school performance and the ability to sustain relationships with peers.
  • Physical symptoms. Decreased energy, changes in eating and sleeping, frequent stomachaches, headaches, and backaches, and neglect of personal appearance and hygiene (such as showering less often and not keeping up on grooming) can be signs that mental health treatment is needed.
  • Self-medicating. If you find any indicators of drug or alcohol use, self-harm, an eating disorder, or other forms of escape, the link to mental illness may be direct. An effort to make oneself feel better can show a great need for mental health treatment.

If you see any of these signs, seek help for your child. With appropriate assessment, identification, and intervention, all mental illnesses can be treated and managed.

Friday, September 27, 2013

10/7/13: Kelley Challen on Transition Assessment and Planning for Adolescents with Special Needs

Presented by Margolis & Bloom's
Monday Lunch Series for Professionals

Generally speaking, transition is defined as the movement from one set of activities to another, but for the families of adolescents and young adults with special needs, it has a more specific meaning. In this context, "transition" refers to the complex process of moving from one life stage to another: from adolescence to adulthood.

Kelley Challen is Director of Transition Services at NESCA (Neuropsychology & Education Services for Children & Adolescents) in Newton, Massachusetts.

Shee will provide a brief overview of transition terminology, highlight best practices for transition planning and assessment, discuss the genesis of NESCA's innovative transition model, and provides practical advice for families and professionals navigating the process.

Lunch will be provided. Registration is required. Register Now!

When:   12:00 noon - 1:00pm Monday, October 7

Where: Margolis & Bloom (Driving Directions)
                   535 Boylston Street, 8th Floor
                   Boston, MA 02116

If you have any questions, please contact Rachel Sandler by email to, or by calling 617-267-9700.

Brunch with Shonda Schilling Sunday, October 27th

Presented by Temple Israel of Natick
and Perfection Lodge AF & AM

New York Times Best Selling Author Shonda Schilling is the mother of a child with Asperger's Syndrome and wife of retired Boston Red Sox All-Star Curt Schilling. Her book, The Best Kind of Different, describes her son Grant’s struggles and the heartbreaking but ultimately blissful journey she and Curt took to understanding this often misunderstood syndrome.

Shonda spends much time and energy speaking publicly about Asperger Syndrome and generating awareness for children with autism spectrum disorders. She works closely with the Asperger’s Association of New England and the YouthCare (now called ASPIRE) organization, and has been a comfort to other families with children on the autism spectrum, letting them know they are not alone.

When:    9:45am, Sunday, October 27, 2013

Where: Temple Israel of Natick
                 145 Hartford Street, Natick, MA

Cost:     Admission and deluxe brunch: $18.00 per person

Please make reservations by October 21, 2013.
Schilling is also a cancer survivor. Her public battle with malignant melanoma, the most deadly form of skin cancer, has been featured in publications and on television.

Shonda invited Good Morning America and the nation into the operating room to witness her fifth surgery, hoping her sun-safety message might inspire others to alter their sun habits.

In 2002, Shonda created The Shade Foundation of America, dedicated to eradicating melanoma through education regarding the detection of skin cancer and the promotion of sun safety. The foundation partnered with the Environmental Protection Agency to create SunWise, a program that helps teachers teach sun safety awareness to children in grades Kindergarten through eight.

Shonda grew up in Maryland and graduated from Towson State College. She worked in television production for Home Team Sports in Baltimore until marrying Curt Schilling in 1992. They have four children and reside in Medfield.


Silent Auction to benefit Temple Israel of Natick, Perfection Lodge and the Masonic Angel Fund. For additional information, please contact Stew Brandt by email to or by calling 508-561-9852.

Thursday, September 26, 2013

Building the Best Brain: How Brain Cell Connections Get Cemented Early in Life


September 20, 2013

When we're born, our brains aren't very organized. Every brain cell talks to lots of other nearby cells, sending and receiving signals across connections called synapses.

But as we grow and learn, things get a bit more stable. The brain pathways that will serve us our whole lives start to organize, and less-active, inefficient synapses shut down.

But why and how does this happen? And what happens when it doesn't go normally? New research from the University of Michigan Medical School may help explain.

Two neighboring brain cells "talk" to one another by
sending signals across a gap called a synapse.
The more active the synapse during development,
U-M researchers found, the more a protein called
SIRP-alpha is cut loose from one cell, travels to the
other, and helps stabilize the synapse for the future.

In a new paper in Nature Neuroscience, a team of U-M neuroscientists reports important findings about how brain cells called neurons keep their most active connections with other cells, while letting other synapses lapse.

Specifically, they show that SIRP alpha, a protein found on the surface of various cells throughout the body, appears to play a key role in the process of cementing the most active synaptic connections between brain cells. The research, done in mouse brains, was funded by the National Institutes of Health and several foundations.

The findings boost understanding of basic brain development -- and may aid research on conditions like autism, schizophrenia, epilepsy and intellectual disability, all of which have some basis in abnormal synapse function.

"For the brain to be really functional, we need to keep the most active and most efficient connections," says senior author Hisashi Umemori, M.D., Ph.D., a research assistant professor at U-M's Molecular and Behavioral Neuroscience Institute and assistant professor of biological chemistry in the Medical School.

"So, during development it's crucial to establish efficient connections, and to eliminate inactive ones. We have identified a key molecular mechanism that the brain uses to stabilize and maturate the most active connections."

Umemori says the new findings on SIRP alpha grew directly out of previous work on competition between neurons, which enables the most active ones to become part of pathways and circuits.

The team suspected that there must be some sort of signal between the two cells on either side of each synapse -- something that causes the most active synapses to stabilize. So they set out to find out what it was.

SIRP-rise Findings

The group had previously shown that SIRP-alpha was involved in some way in a neuron's ability to form a presynaptic nerve terminal -- an extension of the cell that reaches out toward a neighboring cell, and can send the chemical signals that brain cells use to talk to one another.

SIRP-alpha is also already known to serve an important function in the rest of the body -- essentially, helping normal cells tell the immune system not to attack them. It may also help cancer cells evade detection by the immune system's watchdogs.

In the new study, the team studied SIRP alpha function in the brain -- and started to understand its role in synapse stabilization. They focused on the hippocampus, a region of the brain very important to learning and memory.

Through a range of experiments, they showed that when a brain cell receives signals from a neighboring cell across a synapse, it actually releases SIRP-alpha into the space between the cells. It does this through the action of molecules inside the cell -- called CaMK and MMP -- that act like molecular scissors, cutting a SIRP-alpha protein in half so that it can float freely away from the cell.

The part of the SIRP-alpha protein that floats into the synapse "gap" latches on to a receptor on the other side, called a CD47 receptor. This binding, in turn, appears to tell the cell that the signal it sent earlier was indeed received -- and that the synapse is a good one. So, the cell brings more chemical signaling molecules down that way, and releases them into the synapse.

As more and more nerve messages travel between the "sending" and "receiving" cells on either side of that synapse, more SIRP-alpha gets cleaved, released into the synapse, and bound to CD47.

The researchers believe this repeated process is what helps the cells determine which synapses to keep -- and which to let wither.

Umemori says the team next wants to look at what happens when SIRP-alpha doesn't get cleaved as it should -- and at what's happening in cells when a synapse gets eliminated.

"This step of shedding SIRP-alpha must be critical to developing a functional neural network," he says. "And if it's not done well, disease or disorders may result. Perhaps we can use this knowledge to treat diseases caused by defects in synapse formation."

He notes that the gene for the CD47 receptor is found in the same general area of our DNA as several genes that are suspected to be involved in schizophrenia.

Journal Reference

Anna B Toth, Akiko Terauchi, Lily Y Zhang, Erin M Johnson-Venkatesh, David J Larsen, Michael A Sutton, Hisashi Umemori. Synapse maturation by activity-dependent ectodomain shedding of SIRPĪ±. Nature Neuroscience, 2013; DOI: 10.1038/nn.3516

Tuesday, September 24, 2013

More on the Vocabulary Development of Toddlers

From Daniel Willingham's Science and Education Blog

By Daniel Willingham
September 23, 2013

"For now, we can say with greater confidence “talk to your children” not just “talk in the presence of your children.” 

If you follow education matters, you know that the home environment in very early years are vital. One aspect of that home environment is the language infants and toddlers hear at home.

The groundbreaking work of Hart & Risley (1995; replicated by others, e.g. Huttenlocher et al, 2010) showed that socio-economic status of the parents is correlated with vast differences in the amount and complexity of language that children hear at home.

But what aspect of this speech is important? Does speech need to be directed to children? Perhaps all that’s needed is for children to be in the presence of this more complex language. After all, we know that children do not learn language via instruction; they learn it by observation.

Three studies published in the last couple of years build a convincing case that parents should, indeed, talk to their children. Talking in the presence of their children (but to others) does not confer the same vocabulary benefit.

In the most recent study (Weisleder & Fernald, 2013), experimenters tested 29 Spanish-learning infants at age 19 months. The children wore a small device that made an audio recording of all speech to which the child was exposed. The audio recordings were analyzed by software meant to differentiate speech directed toward the child versus speech audible to the child, but directed to others. A subset of recordings was coded by human observers to ensure the accuracy of the software.

Recordings of a full day’s speech were analyzed and the results showed a huge range in child-directed speech; caregivers in one family spoke over 12,000 words to the child whereas in another family that figure was just 670 words. The amount of child-directed speech as not significantly correlated (r = .17) with the amount of overheard speech.

At 24 months, the productive vocabulary of the children was measured by asking the parents to judge words that they believed their child understood and words that their child used.

Of greatest interest, the amount of child-directed speech at 19 months was correlated (r = .57) with vocabulary at 24 months. The amount of overheard speech at 19 months was not (r = .25).

The sample size in this study is limited and there were some quirky features. (E.g., the software sorting “child-directed” vs. overheard speech is good, but not perfect.) But my confidence in the conclusion is bolstered by reports of the same finding from another lab, investigating speakers of other languages: English (Schneidman et al, 2013) and Yucatec (Schneidman & Goldin-Meadow, 2012).

Why must speech be directed to the child?

Weisleder & Fernald administered another task at 19 months meant to measure word processing efficiency. They speculated that the effect of child-directed speech on vocabulary was mediated through efficiency—something like, for example, the speed and accuracy with which the particular phonemes of the child’s language are processed.

This doesn’t fully explain the difference between child-directed and overheard speech. The obvious hypothesis is that other cues (e.g. eye gaze direction) prompt greater attention to speech that is child-directed, and that attention is necessary to build efficiency.

More details will have to await further research. For now, we can say with greater confidence “talk to your children” not just “talk in the presence of your children.”


Hart, B. M., & Risley, T. R. (1995). Meaningful differences in the everyday experience of young American children. Baltimore, MD: Brookes.

Huttenlocher, J., Waterfall, H., Vasilyeva, M., Vevea, J., & Hedges, L. V. (2010). Sources of variability in children’s language growth. Cognitive Psychology, 61, 343–365.

Shneidman, L. A., Arroyo, M. E., Levine, S., & Goldin-Meadow, S. (2013). What counts as effective input for word learning? Journal of Child Language, 40, 672–686.

Shneidman, L. A., & Goldin-Meadow, S. (2012). Language input and acquisition in a Mayan village: How important is directed speech? Developmental Science, 15, 659–673.

Weisleder, A. & Fernald, A. (2013). Talking to children matters: Early language experience strengthens processing and builds vocabulary. Psychological Science, DOI: 10.1177/0956797613488145

Monday, September 23, 2013

Jessica Minahan Tackles 500 lb. Gorilla!

 A Special Evening Presentation Tuesday, November 12th

Effective Interventions:
Students with Sexualized Behavior
While relatively uncommon in school-aged children, sexualized behavior can be very upsetting to parents and professionals. It sometimes even results in students being removed from the public schools.
Students display sexualized behavior for a host of reasons, and there is not a single common profile. For most students, pointing out that the behavior is inappropriate and it needs to stop is all that is needed, but for some, the behavior will persist and require specific interventions. 
Jessica Minahan will tackle myths about sexualized behavior, and teach practical and effective interventions. Her talk will be of benefit to parents and professionals alike.

When:    7:00 – 9:00pm Tuesday, November 12, 2013

Where:  NESCA, 55 Chapel Street, Lower Lobby, Newton, MA 02458

This talk is FREE and open to the public. Seating, however, is limited. To reserve your seat, please call Amanda Renzi at 617-658-9800, or email
About Jessica Minahan, M.Ed., BCBA
Jessica Minahan is Director of Behavioral Services at NESCA.
She is co-author, with Psychiatrist Nancy Rappaport, of The Behavior Code: A Practical Guide to Understanding and Teaching the Most Challenging Students, published by Harvard Education Press. Copies may be purchased at the event.
Minahan holds a B.S. in Intensive Special Education from Boston University, and a dual master’s degree in Special Education and Elementary Education from Wheelock College. She has a certificate of graduate study (CGS) in teaching children with Autism from University of Albany, and received her BCBA training from Northeastern University.
Her additional Massachusetts and other professional certifications include Teacher of Students with Special Needs (Pre-K through 9), Intensive Special Needs (All Levels), Professional Early Childhood (Pre-K through 3), Special Education Administration (All Levels, Initial), Crisis Prevention Intervention Trainer and Wilson Reading Level 1.
Since 2000, she has worked with students who exhibit highly challenging behavior in both their homes and schools. She specializes in creating behavioral intervention plans for students who demonstrate explosive and unsafe behavior. She also works with students with emotional and behavioral disturbances, anxiety disorders, high-functioning autism and Asperger’s Syndrome.

Autism at 70 – from Kanner to DSM-5


via Autism Speaks Science News

September 19, 2013

This week’s New England Journal of Medicine features a historical perspective on autism, marking the 70th anniversary of psychiatrist Leo Kanner’s 1943 description of the disorder.

“This year's revision of the diagnostic criteria for autism is among the most contentious of any," writes author and Duke University pediatrician and medical historian Jeffrey Baker. “[Yet] it reflects one of the central themes in the history of autism: a debate over where to set its boundaries. “

Dr. Kanner didn’t so much define autism as portray it, Dr. Baker notes. The 1943 paper described 11 children who shared high intelligence, a profound preference for being alone and an “obsessive insistence on the preservation of sameness.”

Through the 1960s, psychiatrists continued to view autism as a form of “childhood schizophrenia.” Also popular through the 1960s was the now-debunked idea that autism resulted from emotionally distant mothering (the “refrigerator mom” theory of autism).

The 1970s brought understanding that autism stemmed from biological differences in brain development. Objective criteria for diagnosing autism followed in the 1980s. So did a clear separation from childhood schizophrenia.

“Until the present, subsequent DSM editions have generally moved in the direction of greater diagnostic flexibility and expansion,” Dr. Baker writes. In 1994, for example, the DSM-IV added Asperger syndrome to the autism spectrum.

While the expanding definition provided greater access to services, it created difficulties in determining what kinds of therapy (and how much) are needed, Dr. Baker notes. “The DSM-5 criteria will not solve these problems,” he writes. “But they do represent a move toward a more rigorous definition of autism.”

“Rather than argue over the true definition of autism,” he concludes, “it may be more helpful to ask what definition is appropriate for the task at hand.”

History of Autism at a Glance

1943: Leo Kanner publishes “Autistic Disturbance of Affective Contact” describing 11 socially isolated children who share an obsessive desire for sameness.

1950s-1960s: Autism widely regarded as a form of “childhood schizophrenia.” Psychoanalysts blame emotionally cold mothering.

1970s: Autism understood as a biological disorder of brain development.

1980: DSM-III distinguishes autism from childhood schizophrenia.

1987: DSM-IIIR lays out a checklist of criteria for diagnosing autism.

1994-2000: DSM-IV and DSM-IV-TR expand definition of autism and include Asperger's syndrome.

2013: DSM-5 folds all subcategories into one umbrella diagnosis of autism spectrum disorder (ASD). It is defined by two categories: impaired social communication and/or interaction and restricted and/or repetitive behaviors.


Autism Speaks is dedicated to ensuring that all who need autism services continue to receive them. For more on autism and the DSM-5, see our complete coverage here. As the DSM-5 takes effect, we want to hear about your experiences. Please participate in our survey here.

Sunday, September 22, 2013

From MedPageToday's Blog

By Claudia M. Gold, M.D.
September 4, 2013

Recently, I “launched” my oldest off to college. As anticipated, it was an intense emotional experience full of joy, sadness, and many things in between. (I have to tip my hat to Beverly Beckham for her piece, I was the sun, the kids were my planets, that was very helpful.

However, I might have written that my child was the sun, a burst of light in our household, and the experience of leaving her is like being temporarily knocked out of orbit as our family re-orients to life without her.)

The same week I received in the mail, in exchange for filling out a questionnaire about a study on diversion — use of ADHD medications by individuals for whom it was not prescribed — this pretty laminated poster of all the drugs currently available for treatment of ADHD.

Statistics indicate that serious mental health problems in the college community are growing at rapid rates. Some optimistically speculate that this is because of decreased stigma for getting care. But I wonder at the paradox of the parallel increase in availability of new psychiatric drugs — I counted 22 different formulations for ADHD medications on that poster — and the rise of serious mental health problems.

Could it be that the drugs themselves are responsible for this increase? If the drugs were effective in childhood, shouldn’t we see a significant decline in serious mental illness in college?

How would this work? Starting at a young age, rather than learning to manage stress in the context of supportive relationships, the symptoms are medicated away. The brain is actually wired in relationships, and in the absence of this kind of co-regulation of emotion, the areas of the brain responsible for emotional regulation do not develop properly. All forms of mental illness, including depression, anxiety and attention problems are essentially problems of emotional regulation.

Then, as the challenges of life increase in complexity, the medications often increase in strength and complexity. Children learn to be defined by their medication and are further estranged from a core sense of self. Add to that unknown side effects on the developing brain, and it is no wonder that there is a significant increase in serious mental illness by the time a child gets to college.

But what about that issue of decreased stigma? That also is likely true. At a superb talk given by a psychology professor at our child’s orientation, we learned about the school’s ”invisible safety net.” It is made up of an elaborate interconnected system of students, faculty and mental health professionals to monitor the emotional well-being of the students. It is all about relationships and connection.

The very existence of this net reduces the stigma of emotional struggles. The fact that the school goes to the trouble to train such an elaborate system of care (sophomore advisors — or “SA’s” — the front line of this system, must apply in January of their freshman year, and they get several weeks of training prior to the start of the school year), conveys to both students and parents that it is normal and expected that people will struggle and need help.

I believe there is something to be learned from this “invisible safety net” model. If we as a country were to implement a model of preventive mental health care, we would have in place a net made up of primary care clinicians, early childhood educators, childcare workers, mental health care professionals, as well as others who come in contact with young children and families.

There would be open and expected lines of communication. (At this college, if a parent calls with a concern about their child, within the hour there is a person making face-to-face contact with that student, even if it is just inviting them out for a slice of pizza — and that person is trained to recognize when it is necessary to call in a higher level of intervention.)

If such a net were there from infancy — including a system for identification and treatment of perinatal mental health problems- — through adolescence, then maybe kids wouldn’t need all those pretty little pills to take to college.

Claudia M. Gold is a pediatrician who blogs at Child in Mind and is the author of Keeping Your Child in Mind.

Saturday, September 21, 2013

Young Adults With Autism Less Likely to Have Jobs

From WebMD News via HealthDay

By Brenda Goodman
HealthDay Reporter

September 18, 2013

Young adults with autism are less likely to find work or live on their own than their peers with other kinds of disabilities, two new studies show.

The studies detailed the fates of a national sample of 20-somethings who had received special-education services in high school.

The first study focused on employment. Researchers found that only about half of those with autism had ever held a job since high school, and only about a third were currently working.

Even worse, young adults on the autism spectrum were less likely to be getting a paycheck than people the same age who had other kinds of disabilities. More than 80 percent of those with speech and language difficulties reported having at least one job, for example, while 62 percent of those with intellectual disabilities had ever been employed.

When kids with autism did find work, they made less money. On average, young adults with autism earned $8.10 an hour, while those with other kinds of impairments -- including low IQs, learning disabilities, and trouble speaking and communicating -- were paid between $11 and $12 an hour.

The second study focused on living arrangements.

Researchers found that only 17% of young adults with autism, between 21 and 25 years old, had ever lived on their own.

By comparison, 66 percent of kids with learning disabilities like dyslexia had lived by themselves, as had 62 percent of those who were emotionally disturbed, a category that includes anxiety, obsessive-compulsive disorder, bipolar disorder and eating disorders.

Even those labeled as intellectually disabled, meaning they had a low IQ and slower mental processing, were about twice as likely to have lived on their own as young adults with autism.

"These studies tend to be kind of depressing," said study author Paul Shattuck, an associate professor at the Drexel University School of Public Health, in Philadelphia. "But I want to point out that at every level of functioning in our studies, there are successes."

Shattuck said even among those with autism who are more severely impaired -- they have no language skills and impaired functioning of thinking ability -- "there are success stories, so our job is to increase the success rate."

Shattuck said other studies have shown that getting kids with autism involved in social clubs, extracurricular activities and community service in high school can increase their chances of having friends and employment after they graduate. Internships and after-school jobs are key too.

"The best predictor of getting a job after high school is getting a job in high school," he said. "There's no substitute for real-world experience."

The studies, which were both published August 30 in the journal Autism, drew on data collected in a 10-year nationwide study of teens who received special-education services during high school.

The focus of the research was a group of 620 kids with autism spectrum disorders. They were compared to 450 kids with intellectual disabilities, 410 kids with learning disabilities and 380 with emotional disturbances. Parents and, when possible, the young adults themselves, answered questions about their status every two years from 2000 through 2009.

An expert who wasn't involved in the studies praised the research, saying it lines up with what he sees in his practice.

"I think these articles are right on target," said Alan Hilfer, director of psychology at Maimonides Medical Center in Brooklyn, New York.

Even though kids with autism can be intelligent and sometimes function very well, they can have trouble navigating social situations that require tact and deference, Hilfer said.

"They have more difficulty relating to the people around them," he said. "They have trouble reading cues and, as a result of all that, staying in a job or having jobs offered to them that are commensurate with their skill set is sometimes a little tricky."

Hilfer said kids with autism require intensive tutoring, coaching and mentoring to help them find and keep jobs.

With roughly 50,000 kids with autism graduating from high school each year, Hilfer said, this is a growing problem that remains to be addressed.

"I think we don't have enough programs in place to offer them the support they need," he said.

Friday, September 20, 2013

Asperger's Syndrome, Employment and Social Security Benefits

From - The Asperger's Association of New England

By Kate Collins-Wooley, Ph.D.

NOTE: This article is exceptionally lucid, and although it was written some years ago, it remains substantially accurate and very helpful.

Asperger's Syndrome (AS) is such a recent diagnostic category in the U.S. that most of the individuals who carry it are children or adolescents. We are only now developing a fund of experience that can anticipate and meet schoolchildren's needs; we know even less about the typical vocational functioning and other needs of adults with AS.

Since most children with AS appear to require some interventions, supports or modifications to enable them to succeed in school, it seems reasonable to assume that many adults with AS will require at least some supports or special conditions in the workplace. One of the most common concerns adults report to AANE is work failure. Although many men and women with AS are succeeding in the workplace, many others have a history of being unable to get and hold on to jobs.

This article is intended to help adults with AS (and the parents, spouses, and mental health professionals who support them) to analyze employability, plan for any reasonable remediation of weaknesses, and identify the characteristics of jobs where adults with AS are most likely to feel comfortable and succeed.

For those adults for whom competitive employment is not an option, we will outline how to seek disability benefits. In part, we will use what we have learned about how to help children with AS succeed in school, and adapt those insights and techniques to meet the needs of adults in the workplace.


AS is characterized by three clusters of symptoms or general kinds of difficulties that can directly impact employment:
  • Difficulty processing sensory input (sensory integration).
  • Difficulties understanding social intercourse (theory of mind).
  • Differences in “executive function” (organizational skills) and cognition/information-processing skills, such as difficulty appreciating the “big picture” (“central coherence”).

Just as each cluster of symptoms often necessitates accommodations for a student with AS in school, similar accommodations may determine the difference between comfort and catastrophe on the job for an adult employee with AS. Let’s look at these three areas individually.

Sensory Issues

In the classroom, many children with AS become over-aroused when their senses are flooded by noise, flickering lights, or other triggers. They may feel anxiety or even panic, and react with tantrums. Often they require some accommodations to reduce sensory stimulation, such as sitting at a desk placed against a wall or at some distance from other students. They may wear headphones, or have special permission to leave the classroom to compose themselves in a “safe place,” such as a resource room or the school library.

Workplaces differ greatly in their general sensory load and in their flexibility about worker movement. Obviously , success for AS individuals is more likely in workplaces that are quiet, predictable, and allow frequent brief retreats from social demands, noise, etc. Even when employees with AS may not be aware of or complain about discomfort from noise, activity and unpredictable sensations, sensory overload may manifest itself as loss of focus, stress, or lowered tolerance for frustration.

Tolerance for sensation, or the ability to self-regulate, improves so much with time that adults with AS can often function well in stimulating environments. In addition, an adult at work is seldom quite as “trapped” as a child is in school. Therefore, this issue is probably not a huge obstacle to employment for most people with AS, but may remain a substantial consideration for some.

Social Issues

Most children with AS struggle socially. Some are aloof, and some exhibit behaviors that offend or estrange others. Some wish to have friends, but don’t know how to make a friend or maintain a friendship. Students with AS may also struggle with the social focus and content of subjects such as history or literature. Theory of mind or perspective-taking problems are common throughout the school years.

Most education plans include special supports or instruction to improve social abilities, or to provide some relief from usual social expectations. For example, a child may see the speech therapist or adjustment counselor to learn social skills, but also be excused from eating in the lunchroom, or exempted from the usual disciplinary consequences for behaviors whose consequences s/he may not understand.

For an adult with AS considering employment, the question is whether s/he has sufficient social skills to meet the social demands of a particular kind of work without requiring the special supports and allowances that were provided when s/he was in school. Even if s/he can fit into the workplace socially, will it require such extraordinary efforts as to exhaust him/her, and so interfere with learning other aspects of the position?

We can expect that many adult employees with AS will have idiosyncratic difficulties in getting along with coworkers, accepting and responding to supervision and, especially, in dealing with the public. We think that most adults with AS who succeed at work are in roles that allow them to work independently most of the time, and have minimal responsibilities for or to unfamiliar people (i.e. the public or supervisees). They will need a sympathetic supervisor who understands the nature of AS, and can give close supervision and clear, patient instruction about job responsibilities and tasks.

Adults with AS should seek work in fields that do not require a great deal of “mind reading” or empathy. If attempts to obtain work through traditional resumes and interviewing are not effective, they may wish to arrange for special introductions to obtain work (e.g. through Mass Rehab or one of its provider agencies, or through personal or family contacts). It is also very helpful for many adults to find a mentor (social coach, job coach) who can act as an interpreter between the employee and others in the workplace.

A mentor can help the employee with AS decipher and abide by the unwritten social rules of the workplace. At the same time, the mentor can help supervisors and co-workers set the employee with AS up to succeed, by providing clear instructions and using an explicit, straightforward style of communication. A mentor can help ensure that supervisors and co-workers understand that any inadvertent social gaffes are related to the employee’s AS, so that others can be accepting, and continue to provide the information, support, and direction the employee with AS will need to stay on the job.

Executive Functioning and Cognitive Issues

Fortunately, many schools have embraced the concept of “all kinds of minds” and the need for individualized instruction to enable all students to achieve their full potential. When students with AS get appropriate support, their intelligence, talent, original ideas and wonderful, off-beat humor can shine forth for teachers and peers to savor and appreciate.

Despite average or better IQ, however, many kids with AS have difficulty in school because of difficulties with organizational skills, problem-solving, abstraction, processing speed, concentration, and deficits in central coherence. They may be early readers but have relatively poor reading comprehension. They may accumulate a large fund of detailed knowledge, but miss the big ideas. To address these issues, students with AS almost always require some or all of the following:
  • Particularly generous and flexible teachers.
  • Accommodations and modifications such as graphic organizers, semantic maps, previewing, reinstruction, extra modeling, duplicate sets of books and materials, extra reminders or prompts, extended time for assessment or for assignments, and/or a reduced workload.
  • A one-to-one aide, smaller class sizes, and a longer school day or school year.

Unfortunately, it will be quite some time until an “all kinds of minds” culture spreads to the workplace! The accommodations that allowed the child with AS to show his or her intellectual ability and special talents in school are generally not readily available at work. All responsibility for organizing, remembering, and interpreting cues falls on the worker with AS—and expectations for timeliness and quantity of work are usually non-negotiable.

In addition, employees are expected to exercise “common sense” or “good judgment” in handling a variety of situations whose nature and requirements may not be at all obvious to a person with AS. Adults with AS usually have great learning potential and very good, but different, minds. However, their different cognitive style can pose a very significant handicap to full employability for adults with AS, because of these pressures for independence and productivity, and because of the expectations for “good judgment.”

People with AS often have limitations in thinking conventionally about priorities, scheduling, or balancing competing interests because of their problems with “central coherence.” Even well-meaning co-workers or supervisors may be taken aback by the inability of an employee with AS to differentiate between details vs. the “big picture,” or a tendency to overlook context when interpreting information.

Success for AS individuals is more likely if they are able to work in an area related to their special interests or talents. Some become quite expert in a particular field because of extensive study or the serious pursuit of a hobby. In that case, they are better able work quickly and require less supervision, while their competence and contributions are more likely to be recognized.

Many adults with AS are more clever than quick; they will probably do better in a setting that emphasizes quality of work over quantity, and where time pressures are relatively low. They may excel at technical or concrete tasks, but may not do as well at abstract or managerial tasks. They will also do better when others prioritize tasks and manage projects.

The Ideal AS Workplace

To summarize, we predict that most adults with AS will be most likely to succeed in a workplace or job role:
  • that is quiet and predictable, and allows for sensory retreats.
  • that is low in social demands.
  • that provides a great deal of explicit supervision from an informed, compassionate boss.
  • where a special, more technical or concrete skill or interest is employed.
  • where there is less need for exercising “common sense” or engaging in conventional thinking.
  • where time or productivity pressures are relatively low.

Even so, for some adults with AS, competitive full-time employment may not be a realistic option, because the right match is not available, or because no workplace is able and willing to provide the kinds of accommodations or levels of supervision they require in order to succeed. Others may require additional preparation or special “sheltered” pre-employment experiences before they are ready for part-time or full-time employment in a mainstream workplace.

When Competitive Employment is Not an Option

As early-diagnosed and early-treated children with AS come of age, we hope that tomorrow’s adults with AS will be better prepared to enter the workforce—but the data is not yet in. Today, many adults are connecting with the AS diagnosis, which was not available to them as children, precisely because they are seeking explanations for and assistance with their problems in the workplace.

Some fail repeatedly despite having advanced degrees or superior skills or knowledge. A weak work ethic or poor work habits are not the source of the problem. Adults with AS are out there, giving it their all—but still not getting the job, or getting fired repeatedly.
Some individuals with AS may suffer as well from anxiety, depression, OCD, ADHD, tics, or seizures. By themselves these symptoms or conditions might not be disabling, but they may make work impossible in combination with AS.

Some are overwhelmed or even injured by the stress of coping with an uncongenial work environment, and/or by their repeated work failures. When someone has had several work failures and/or has had a significant worsening of their physical or psychological health because of work-related stress, they may require relief from work expectations in order to have some balance or quality of life. For them, it may be necessary to consider alternative support, such as disability pension benefits.

It may also be clear that certain young adults with minimal or no previous work attempts will probably not succeed at any kind of conventional employment, and are better off not attempting the impossible.

How to File a Social Security Claim

When work is not an option, most people will turn to social security for disability benefits, either SSI (Social Security Insurance) if you have no work history, or SSDI (Social Security Disability Insurance) if you do. (People with some work experience may also have some private disability insurance plans, but these also generally require that you also apply for social security benefits.)

If your claim for benefits is successful, you will become entitled to both income (usually $300-$400 per month depending upon your living situation) and health insurance (Medicaid if you have no work history, and Medicare if you do).

We will now explain the adult social security application process, and in particular the clinical judgments that are made about whether social security applicants (claimants) are or are not able to work. Understanding clinical reasoning about employability may also help individuals with AS and their supporters figure out whether further work attempts are necessary or desirable.

As Peter Martinelli explains in his article Disability Aspects of Asperger Syndrome in the Fall, 2002 issue of the AANE News, there are certain non-disability eligibility requirements for disability benefits that are generally easily sorted out during the first contacts with the Social Security Administration. Applications are usually made through the community field offices and can be made in person, by telephone, by mail, or even over the internet. The Social Security field office verifies the non-medical technical eligibility requirements such as age, employment, marital status, or Social Security coverage information, and sends the case to the Disability Determination Services (DDS) agency for evaluation of evidence of disability.

DDS is always a state agency, funded by the U.S. government, and in Massachusetts is a service of the Massachusetts Rehabilitation Services.

You (the adult applicant or claimant with AS) will be asked by DDS what conditions or illnesses you feel prevent you from working, what your work history (if any) has been, including when and why you stopped working. You will be asked to provide the names, addresses, phone numbers, and dates of services of all your health care providers, and for any hospitalizations.

You should list all factors that may play a significant part in your work problems, even if you feel that AS is the primary or major concern. Some health problems and all psychiatric diagnoses can and should be researched as contributions to disability.

If you are a current or recent student you should also remember to provide the school specialists in psychology, OT, or speech and language as treating sources as well, especially if there are test reports available. If you are likely to find the application process difficult, you may also list on the application a friend or relative that you authorize DDS to communicate with if problems arise. DDS will not routinely contact this helper, but may do so if you can't be located by mail or phone, or if you seem confused or demonstrate serious difficulty about the process during the weeks or months that DDS is investigating your claim.

DDS will write to all of the treating sources you list on the application and may request your records, any treatment summary, any testing or lab reports, and/or may request that certain special inquiries be completed. A treating source is a claimant's own physician, psychologist, social worker, therapist, or other medical care provider, and is considered by DDS to be the best source of evidence about the nature and severity of your problems. If you have had treatment it is essential that DDS knows who, what, when, and where.

By far the best way for treaters to respond to DDS requests for information is to complete the DDS form (in Massachusetts, form 0588), which asks very specifically about the impact of your impairments on daily activities and interpersonal relationships. Therapist treatment notes are often inappropriate for information about work functioning because they are focused on symptoms such as sleep or mood rather than on functional activities that relate more clearly to work obligations. They also may use terms such as “stable” or “improving” that are misleading about your abilities because it is referring to your unique baseline or typical functioning rather than to a neurotypical reference group.

Be sure to ask your treater to fill in this particular form. It does not take long, can be handwritten, or can even be dictated to a DDS toll-free phone service. The form requires information about your illnesses, a brief history about any hospitalization or residential treatment, your current mental status (questions about sleep, thinking, or mood). Then there are the questions about daily activities and relationships. Your treaters are not asked whether you are disabled; that is considered to be a decision only DDS can make. The treater is given the opportunity to comment on the severity of the symptoms and the impact of the impairment on how you live.

It is important that your treater give specific examples of problems. General comments such as “can't work” or “very limited” must be backed up with concrete evidence. The following are the areas of day-to-day life that provide insight into your potential functioning in a job, which your treater will be asked about.

Adaptive Function: In general, how do you deal with social relationships, daily responsibilities, and leisure time activities? This is a question about maintaining some kind of daily routine and set of responsibilities. This is not particularly a limitation for most people with AS.

Concentration and Attention: The concern here is about the ability to accomplish chores without significant distraction. Some people with AS cannot cook without forgetting things on the stove, or make lists and lose them, or mismanage essential paperwork because of internal preoccupations, obsessive compulsive concerns, or because of problems with perseveration.

Memory: This is a question about the ability to remember instructions, or tasks such as shopping.

Ability to travel in public: This is a question about capacity to drive or to use public transportation without a companion.

Social: This question may address such issues as neatness and punctuality, and the ability to accept supervision and get along with co-workers.

Routine stress: This is a question about keeping up with responsibilities when there are changes in the tasks or schedule, or when productivity demands increase. How a person handles being hurried or thrown simple upsets reveals a great deal about her/his capacity to cope with work situations.

Need for excessive supervision: Problems dealing with social demands and with stress tolerance, as well as poor decision making or judgment, and preoccupation or negativism, may necessitate a level of supervisory attention that is not generally available in competitive employment.

Past work: Your treater will also be asked if you have had any pre-vocational services or opportunities such as a sheltered workshop or Mass. Rehab. Support. There is also a question about whether you have resigned from or been fired from jobs because of psychiatric symptoms. Psych treaters often are not aware of these details, so you should talk about any work failure experiences with your treater before this question is answered. If you do not have any employment experience, this may be the place for your treater to explain why work attempts have not been made.

For people with some sustained employment, this is the place to make clear why work became unmanageable. If there was any kind of special support in place at a past job, that should also be clarified. Working for friends or relatives, having a uniquely supportive supervisor, or being entirely self-employed may be as “exceptional” for level of support as a vocational rehabilitation setting and may explain why competitive work is not possible despite a strong work history.

You should check in with the disability examiner assigned to your case to make sure that all the treaters or care providers have sent the DDS the requested information about you. If reports are missing, it may be necessary for you to get your records yourself, or to remind, encourage your treaters' offices to send out this vital information. You may need to be quite persistent and assertive, or to enlist the help of a family member or other “neurotypical” (non-AS) ally.

If you have not had relevant treatment, or your records are unavailable or are unclear about your functioning or limitations, DDS will arrange for a consultative examination (CE) at their expense. A psychiatrist or psychologist will interview and/or test you to learn more about your abilities and limitations. These doctors are well informed about Social Security disability requirements, but may not have any particular expertise about AS.

If you are asked to attend a CE but feel that you have treaters that know you well and have seen you within the past year, you should check to see if they have provided records to DDS, or will do so immediately. If sufficient evidence is provided, DDS will cancel the scheduled CE; however, if it is not cancelled you must attend the exam.

Medical Professionals Review the Evidence

Once the DDS has collected a body of information about your case, a medical and/or psychological consultant reviews your application with all the supporting evidence. Medical concerns are reviewed by a non-psychiatric physician, and psychiatric concerns are reviewed by a psychiatrist or psychologist. This is a review of the data collected only; the reviewer does not have any contact with you the claimant. The reviewer may contact your treaters, generally by phone, for additional information.

In addition to the information in your medical records, though, the reviewer will take into consideration some of the information you provided in your initial interview about your daily activities and your work history. If they haven't been sent to you initially, ask your assigned disability examiner for an Activities of Daily Living (ADLS) form and, if you have been working, for a Work History form. Use these forms to provide information about your social deficits, problems with stress tolerance, or difficulty functioning independently.

You may also send in any non-medical evidence that you think illustrates your problems, such as a termination letter from an employer or a report from the Dean of Students about your problems with dorm life. Do not send general information about AS or your other conditions.

The reviewer is required to determine that documentation of the existence of the claimant's impairment (the illnesses, syndromes or diagnoses) has come from an “acceptable medical source.” For AS, this means a licensed psychiatrist or psychologist (M.D., Ph.D., Ed.D., Psy.D.). Once that is established, all the medical evidence as well as information from any non-medical source (you yourself, social workers, other therapists, teachers, employers, etc.) can be considered to determine the severity of the impairment.

The reviewer will then consider all of the medical and non-medical information provided and make decisions in a “sequential analysis” about eligibility for disability benefits, as described in Peter Mortinelli's Fall, 2002 article. The claim will be “allowed” and the benefits provided, if the reviewer determines that:

  • The claimant has not been performing “substantial, gainful work.”
  • The claimant has a “severe impairment.”
  • The severe impairment has been limiting, or is expected to limit, employability for more than twelve months, and fits into a specifically described set of disability problems that are considered clear indications of total unemployability.


The disability problems have prevented the claimant from doing relevant work in the past, and considering the residual mental abilities (age, education, and acquired skills) it is not reasonable to expect the claimant to work

What If Your Claim is Denied? The Appeals Process

If benefits are denied, some explanation is provided about the thinking behind the decision. The letter may report that the impairments are not severe, or are not expected to be disabling for at least twelve months, or do not preclude simple work situations. This provides a framework for planning for an appeal.

The first level of appeal is called a "reconsideration," which is generally a review of the same available evidence by a different psychologist or psychologist. If that is not favorable, the claimant has a right to a "hearing" before an administrative law judge. The final level of appeal, short of Federal Court, is a review by the Appeals Council. A significant portion of cases are decided in favor of the claimant at all levels of appeal, and do not require an attorney.

It may take quite some time to go through the appeal process, but it should be pursued if you feel that you have been misunderstood, and you continue to be unable to work because of your disorder . It is highly desirable to provide new and/or different evidence about your limitations during the appeal process and it is wise to address the reservations outlined in the denial letter.

Work Incentives

Even if you are awarded disability benefits (income and health benefits) it is possible, and perhaps desirable, for you to continue to attempt to work. Social security and SSI have special rules called “work incentives” that provide continued support while you work on a trial basis. As long as you are medically disabled, benefits can continue for many months. Even after benefits stop, you still keep your Medicare or Medicaid for many months.

During this period, if you stop working, you return to full benefit status. The purpose of the work incentives is to encourage you to try to work without risking your disability status. These work incentives should be part of the discussion between psychological treaters and the AS patient when making treatment plans about work or disability benefits efforts.

To obtain copies of Peter Martinelli’s article on SSI, or Living, Loving and Working: Life Issues, Solutions, & Resources for Adults with AS, contact the AANE office. For a “red book” summarizing Social Security Administration services for people with disabilities, call 1-800-772-1213.

Children with AS may also be eligible to receive SSI if parental income is low, or SSDI if a parent has died.