special education

Autism and Effective Behavioral Treatments: Don’t Medicate, Educate!

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By Ilana Slaff, MD

Editor’s Note: Dr. Ilana Slaff is a psychiatrist specializing in autism spectrum disorders.  She completed an autism research fellowship at Mount Sinai Medical Center in New York, has lectured internationally about diagnosing and treating autism, and has testified at public hearings before the FDA and other bodies.  She is the author of Don't Medicate—Educate!: One Family, Three Cases of Autism, Safe Treatment for Dangerous Behavior, a book that chronicles her own experiences as the sister and mother of people with autism and ways to determine effective treatment.  We would like to thank Dr. Slaff for contributing this guest content to our blog!  If you would like to submit a guest blog post related to students with disabilities, please let us know.

For students with autism, an appropriate functional behavior assessment (FBA) can be the key to their success in school and in life.  I have seen this play out in my own family through my identical twin brothers and daughter with autism.  My brother, Matthew, and my daughter, Talia, received applied behavior analysis (ABA) and have not needed medication.  In the case of my other brother, Stuart, our family unfortunately could not obtain funding for effective treatment.  As a result, instead of being provided with treatment such as ABA, Stuart was prescribed twenty medications at once, mostly psychiatric or to manage side effects.  

To be useful, an FBA needs to examine the antecedents and consequences of a behavior to find out why the behavior is occurring.  Different behaviors can have different functions and each FBA needs to examine behaviors separately.  For example, an aggressive behavior may be to simply avoid performing a task whereas self-injury may be to both avoid tasks and to provide self-stimulation. 

Unfortunately, school districts often lump all of a student’s behaviors together, regardless of their different functions.  A quality FBA, however, will look at each behavior individually, thereby determining the plan necessary for the student to improve without the use of medication.  For instance, in the past Matthew and Talia each frequently exhibited dangerous behaviors—in both cases, the frequency and intensity of those behaviors have substantially decreased without medication.

Prior to starting his ABA program, Matthew required surgery due to his head banging and was in the hospital for more than five months.  He also often engaged in self-injury and aggression.  Since beginning his program, he is currently on seven positive behavior contracts—when not exhibiting problem behaviors, such as head banging or aggression, for specified periods of time, he earns breaks and access to preferred activities and he loves earning his preferred reinforcers.  As a child, my family had to often cancel trips due to his behaviors, and while in the hospital he certainly could not go anywhere.  After starting his ABA program almost thirty years ago, however, he has been off medications, successfully visited Niagara Falls with my mother and accompanied by school staff, and now has a paid job at his program. 

For over 11 years, Talia has attended a school that provides intensive, one-to-one ABA instruction.  The intensive ABA program has helped with her aggression, pica, mouthing objects and food stealing.  Moreover, Talia’s school has an effective behavior intervention plan (BIP) in place.  Talia has benefitted from differential reinforcement of other behaviors (as has Matthew) and from an interruption procedure.  After going an average of five minutes without any of the above behaviors, Talia earns a token on her board.  Tokens are objects such as pennies, stickers or checkers that can be placed on a board for desired behaviors, and after earning a previously specified number of them, the tokens can be exchanged for preferred items.  After earning nine tokens, Talia can exchange them for a preferred reinforcer.  If she engages in a problem behavior, there is a procedure called response cost where she loses her tokens and has to start earning them again.  She has learned to stay seated for longer periods of time and can participate more fully when in the community, such as at a restaurant.

Unfortunately, Talia’s case isn’t the norm.  Many school districts often have a hard time providing consistent individualized intensive BIPs due to a lack of training and supervision.  For example, some individuals will respond to token boards, earning preferred items after a previously specified number of tokens, but may require variable reinforcement where the time intervals for earning tokens changes.  Some individuals are not ready for token boards and need the preferred item itself after not exhibiting a behavior in order to be effective.  Schools will sometimes request that families medicate their children without first implementing an appropriate BIP (which is particularly troubling given that school districts are not qualified to prescribe medication, and a recommendation for medication cannot be legally included on a student’s individualized education program).

But medication use in unnecessary circumstances can have untoward and even dangerous side effects.      

My brother Stuart, for whom we could not obtain funding for ABA, has unfortunately been repeatedly hospitalized for his behaviors, often sleeps throughout the daytime, and has had life-threatening side effects from his medications which required hospital visits.  Individuals with autism and intellectual disabilities may also be more susceptible to certain side effects such as seizures and diabetes.  Individuals with limited communication skills may not be able to express their side effects, resulting in them being detected only when life-threatening.  Altered pain sensitivity may also prevent these individuals from realizing they are experiencing a side effect until it is too late. 

We must make sure children are at a placement which can adequately treat their problem behaviors as well as address their academics.  While there is a place for psychiatric medication, medication needs to benefit the child and not the placement.  Medication should never replace education.

Disclaimer: Guest blog posts do not necessarily represent the views of The Law Office of Steven Alizio, PLLC.

Children’s Mental Health Leader Spotlight: Emma Stone

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Actress Emma Stone is frequently in the news, whether for starring in Easy A, winning best actress for La La Land, or for her new Netflix series Maniac.  But this week, she made headlines for something completely different: she is the newest board member of the Child Mind Institute, a national organization that provides resources and support to children with mental health and learning disorders (as well as a sponsor of our upcoming 2nd Annual Know Your Rights conference).

So what’s the connection?  In the past few years, Stone has often spoken publicly about her experiences with anxiety in order to try to reduce the stigma that often comes along with mental health issues.  In a video for the Child Mind Institute’s #MyYoungerSelf campaign, she wanted to make sure children know that they are not alone.  “Everyone experiences a version of anxiety or worry in their lives, and maybe we go through it in a different or more intense way for longer periods of time, but it’s not—there’s nothing wrong with you,” she said in the video.

Stone traces her anxiety back to when she was about seven years old, according to an interview in Rolling Stone.  She says in the interview: “When I was about seven, I was convinced the house was burning down.  I could sense it.  Not a hallucination, just a tightening in my chest, feeling I couldn’t breathe, like the world was going to end.  There were some flare-ups like that, but my anxiety was constant.  I would ask my mom a hundred times how the day was gonna lay out.  What time was she gonna drop me off?  Where was she gonna be?  What would happen at lunch?  Feeling nauseous.  At a certain point, I couldn’t go to friends’ houses anymore—I could barely get out the door to school.”

But Stone said seeing a therapist helped her a lot, as did improv and acting, when you have to be present in the moment rather than worrying about the future.  She also drew a book for herself to visualize what happens when she listens to her anxiety rather than continuing to go about her day: “I drew a little green monster on my shoulder that speaks to me in my ear and tells me all these things that aren’t true.  And every time I listen to it, it grows bigger.  If I listen to it enough, it crushes me.  But if I turn my head and keep doing what I’m doing—let it speak to me, but don’t give it the credit it needs—then it shrinks down and fades away,” she told Rolling Stone.

While Stone still panics sometimes, she continues to manage her anxiety with coping mechanisms that work for her, such as therapy and meditation.  She also tries to keep conversations about anxiety out in the open, she said on a panel with Dr. Harold Koplewicz, president of the Child Mind Institute.  Upon announcement of her role on the board of directors, she said she is proud to join a “stigma-shattering” organization and “be of service to children and teens across the nation with mental health or learning disorders.”

If your child struggles with anxiety or other disorders, check out some of the Child Mind Institute’s free resources.

Systemic Problems for Special Education Students

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The New York Times reported last week on T.J., a 12-year-old student with an intellectual disability who the school system has left behind.  T.J. still reads at a first-grade level.  He was not properly diagnosed until recently, and was not getting appropriate services for what he needed, according to his mother. 

Unfortunately, T.J.’s story is not unusual.  Of the some 200,000 students with identified disabilities in the NYC system, the department itself admits that about a quarter of those students did not receive the specialized instruction they need just in 2016-2017 school year—and that was a significant improvement from the year before.  The real number of students not receiving necessary services is likely even higher, as the department’s estimate assumes that all students’ IEPs currently mandate the appropriate services—a big assumption—and leaves out students who may need IEPs but have not gotten them.  On top of that, Spectrum News NY1 recently revealed that the Department of Education is months behind on payments to therapists, and as a result, students are not getting the therapy to which they are entitled.

But we want you to know that you are not alone trying to get your child the services they deserve.  If you feel your child is not getting what he or she needs to succeed, equip yourself to speak up.  Take a look at our resources page to get started.