Monthly Archives: April 2015

My Journey to Developmental-Behavioral Pediatrics

Marisa Toomey, M.D.

If there is one thing that has been a constant in my life, it is the fact that my father does not cry. It is not that he has ever been one to grunt monosyllabic answers or greet my dates with a shotgun. He bakes, he likes independent films, and he always reminds me “your mother is the one in charge.” Still, he has never openly shed tears. Thus, when I saw him cry in public a few years ago, it sent me into a bit of a tailspin.

My parents and I were at a dance for my younger sister Devon and other adults with developmental disabilities. At the time Devon, who has Autism, was twenty-five. Unlike most of the other individuals there, Devon does not live in a group home. She still resides at my parents’ house.

She was diagnosed in the late 1980s, when the only pop culture reference was “Rainman” and when no one had a puzzle-piece, ribbon-shaped bumper sticker indicating their awareness. I cried all of the time back then. No one understood her, and everywhere we went, other children taunted “freak” and “retard” at her. My father always reminded me that all that mattered was that she was my sister and that we loved her just as she was.

He cried now, over twenty years later, because the hope he felt back then was gone. He saw a future for Devon that none of us wanted. An inevitable group home once my parents become too old to take care of her. A social circle of individuals who cannot always respond to my (highly verbal and incredibly outgoing) sister’s pleas for friendship. A lifetime of wishing she could be a part of something more.

For several years, I had begun to feel the same way. I had applied to medical school with the sole intent of becoming a developmental-behavioral pediatrician. I had always wanted to be my sister’s doctor, and I had always believed that my personal experience with Devon gave me an insight that would make me a more compassionate physician.

As the years passed, and as my sister left the organized world of special education and drifted into the nebulous territory of adult services, I began to wonder if it would all be too difficult. It was clear that Devon was unhappy leaving the friends she had made at her school and being forced into an adult services day program, where many of the people are older and non-verbal.

I began to think that I would be the worst kind of developmental-behavioral pediatrician if I had no hope for the future of the children of whom I took care. I convinced myself I should do anything but developmental-behavioral pediatrics and began to ponder what other field in pediatrics would better serve me.

These thoughts turned into a sensation of shame as I sat at the dance and watched my father hurriedly attempt to mask his tears with a mumbled “there’s something in my eye” as he rushed off to the men’s room. What had become of my dreams? I had let frustration and fear turn my goals into regrets. When did I give up on my sister…and myself?

As I sat at the dance that night, I saw my future as a clinician who was happy at work but never truly inspired. I saw my sister’s experience becoming a secret I would keep. I saw myself forever abandoning any attempt to advocate for changes for the better for individuals with developmental disabilities.

And then I looked over at my sister on the dance floor. She was with my mother, and it was very clear that she enjoyed the music as she swayed in time to it. I realized that I was the one who had decided the situation was completely hopeless. Devon still keeps dancing.

My passion never died – I just became scared for the future. It is not easy, and I am not going to pretend that this essay should have a neatly packaged ending. My father did not come back bright-eyed, and we did not all dance joyously together as a happy, hopeful family. The situation is very difficult, but that does not mean I should relinquish my goals of advocating for individuals like Devon so that the future can improve.

I cannot cure my father of his tears, but I can try to do something that helps individuals like Devon.

04-23-2015

Reprinted from AAP section on Developmental and Behavioral Pediatrics, Development and Behavioral News. www.dbpeds.org. SODBP Spring 2013 Newsletter.

Dr. Marisa Toomey will complete her Fellowship in Developmental and Behavioral Pediatrics at the Children’s Hospital of Philadelphia in June 2015.

Something hurts!

As a parent of an adult with Autism who has many health issues, I know all too well the behavioral challenges that can arise as a result of being in discomfort due to physical pain. Even when you get to the point of recognizing the behavior is a result of physical pain, it is difficult to figure out what is hurting.  You have to be a very good observer to figure out what is going on physically, as individuals on the Autism Spectrum,  verbal or non-verbal, have difficulty in communicating about their physical discomfort.  When you ask my son verbally, “how are you feeling”, his answer is a standard O.K. Believe me, you know he is not O.K.

I recently watched an interview of Margaret Bauman regarding Medical Cormorbidties in Autism Spectrum Disorder  as part of an Autism Spectrum Disorder: Research and Treatment Implications webinar series conducted by the Cleveland Clinic.

In the course of the interview she discussed the fact that often medical issues are overlooked because the person with Autism Spectrum Disorder often communicates their discomfort with their behavior. The behavior is simply seen as part of their Autism, and so the physical issue is overlooked.

Researchers are coming to understand that individuals with Autism Spectrum Disorder often have various medical conditions that can really impact their life, and as Dr. Bauman has pointed out, affect their behavior.

“Many children and adults diagnosed with an ASD have comorbid health problems. Recent large-scale studies,including a detailed assessment conducted by the US Centers for Disease Control and Prevention (CDC), have confirmed that several medical conditions are significantly over-represented in people with ASD compared to the general population and other developmental conditions prevalence estimates. Individuals with ASD have much higher than expected rates of various medical conditions studied, including:ear and respiratory infections, food allergies, allergicrhinitis, atopic dermatitis, type I diabetes, asthma, gastrointestinal (GI) problems, sleep disorders, schizophrenia, headaches, migraines, seizures and muscular dystrophy (Chen, 2013; Gurney, 2006;Isaksen et al., 2012; Kohane et al., 2012; Mazurek et al., 2012; Schieve et al., 2012).” reference from: Medical Comorbidities in Autism Spectrum Disorders A Primer for Health Care Professionals and Policy Makers,Second Edition: July 2014

Getting back to my son’s pain issues specifically… I took some time to really think through what I should do to support his communication about pain. I reminded myself that verbally asking a person with Autism an open-ended question such as “how do you feel?”  or “what hurts?” , is not the best way to get a answer that will be helpful because they are visual learners. They process information better when they see it, and need to have some visual options to choose from to support their difficulty in communicating about how they feel. Even when they learn to tell you something hurts, they have difficulty with organizing a reliable response.

So, I took the logical next step- create some visual supports! My son now processes my question as to how he is feeling by looking at a feelings chart. I did not use it only when I was he was upset, but at other times when he was calm so he learned what “I’m O.K.” meant. When he points to “I’m O.K” I point to “Something hurts” while saying, “so that means nothing hurts”, to have him confirm his answer. This has helped him to think about and better communicate  how he feels.

feelings chart

In the process of utilizing this visual with my son, I learned that I needed to velcro the symbols onto the background or my son will point to the same spot each time. So I move the symbols so that he really looks and accurately answers. If I did not do this he cannot use the visual to communicate how he is really feeling.  How the visual is arranged and implemented is key to its’ usefulness!

With a good amount of practice and talking about how parts of the body can hurt, he is more accurate in communicating that something hurts.

The next step was to create a visual for him to tell me what hurts and how much- the body part in front and the how much in back.

    circles and body

I found he was not able to use the full body and point to the area that was painful. So back to the drawing board (when a visual is not working, remember to tweek it!)

I created a visual with the various body parts that are  velcroed onto a background so again they can be moved around so he won’t point to the same spot each time. I did not put more than 4 body parts on a side so that there would not be too many symbols for him to look at.  I point to each symbol to help him focus on each one.

What hurts

The visual with the actual body parts has worked very well- he is able to more accurately tell me what is hurting.  It did not happen overnight, but it was worth the work.  Now, people are  able to help him with his discomfort! What a relief for all involved!

I share this story in the hopes that you will plan to create some visuals around medical issues for anyone who has Autism Spectrum Disorder. Since we know that communicating about physical pain due to medical issues is such a challenge for individuals with ASD, this support is crucial to their well-being and can even be a lifesaver. Sadly, Dr. Bauman talked of doing autopsies on individuals with ASD and only then finding the medical cause of death. Not every health issue is a matter of life or death, but each can be very challenging if the individual does not develop a way to communicate about his or her physical pain.

by Linda Armstrong