News: teen autism

Pediatrician with Autism Uses Her 'Aspie' Skills to Better Care for Kids

By Gen Cohen

Doctor says her autism helps her understand her special patients in a way that no other pediatrician can.

By Rochelle Flynn, MD, FAAP via parenting.com

 

If you have a child with autism, you have probably read everything about the disorder—from articles written by other parents raising a child with autism to psychologists giving their professional opinions to people who have the disorder sharing their own experiences. And you have likely taken your child to the pediatrician for advice about childhood illnesses and parenting suggestions for your special child. In your mind, you try to coalesce all of the information from so many diverse sources as you try to figure out how to help your child to reach his or her full potential.

But what would you think if you took your child to the pediatrician and instead of the same routine advice, she is able to explain things to you that your child is likely experiencing, but may not be able to communicate? You're probably thinking, "Great, I found a pediatrician who has an autistic child, too." Nope—actually the pediatrician has autism spectrum disorder! Say what?!

The story of my diagnosis begins almost three years ago, when I was officially diagnosed with Asperger Syndrome on May 15, 2013 (later revised to "Autism Spectrum Disorder-Mild"). At the age of 42, I finally had an explanation for the decades of struggling to fit in and for the severe anxiety associated with struggling to survive in my career.

When I was a child, autism referred to the more severely affected, nonverbal children. That certainly didn't apply to me. After my diagnosis, I started reevaluating my entire life through the eyes of autism. So much now is starting to make sense. In second grade, I begged another girl to be my friend. In high school, I made a joking comment to someone and my classmates got really upset. I felt the tight grip of pressure in my chest from everyone's reaction, but I didn't understand what I had said wrong.

All my life, my "obsession" was becoming a doctor. There was a path to follow and getting into medical school was the final step to this dream coming true. The very first day stands out in my mind as the day when one of the deans approached me "out of concern" because she noticed that I "seemed more anxious than any other student." From that day on, medical school became the start of a career-long roller coaster ride of anxiety, when my personal drive and intelligence smashed full-speed into the brick wall of all of my social skills' deficits. As I fought to survive and achieve my dream, the emotional toll it took on my already-fragile self-esteem left permanent scars that to this day I struggle to overcome.

Graduating medical school should have been the realization of my lifelong dream, but the struggle to fit into a career where so much relies on social skills meant that my journey was just beginning, and every day was a new battle to survive. I started my career in pediatric emergency medicine where every day was different, and I loved the puzzle of piecing together clues and making a diagnosis. However, the high-stress environment, the tragedy of young children dying, and the physically unbearable work schedule all built up over the years. To see colleagues spend their entire careers in one place made me feel like an incredible failure as I floundered around trying to find my career niche.

My practice style focused on providing information to educate parents rather than performing unnecessary tests or giving unnecessary prescriptions. For many parents in the emergency department, however, this was the trigger for complaints because I "didn't fulfill their expectations" (that antibiotic for their child's virus, etc.). Most times, this occurred long after they left the hospital. I never suspected that anything was wrong, only later to be criticized by my supervisors. It did not matter that I did everything medically correct, only that the parent was "not satisfied." And so this pattern continued: well-meaning advice by me would result in complaints by the parent and censure by my supervisors. My brain became so conditioned by this that the grip of panic in my chest became increasingly frequent, triggered even by thinking about work. No wonder so many on the autism spectrum develop PTSD after years of this type of unconsciously triggered anxiety and the emotional scars it leaves behind.

Switching careers to general pediatrics, where I am now, was my attempt to find families who could appreciate my practice style. However, new sources of stress come from the constant daily struggle to navigate the subtleties of office policies and politics that everyone else seems to understand but often make no common sense to me.

As I am beginning to understand myself better after my diagnosis, I am also realizing that there are many great benefits to being a pediatrician with autism. I think that choosing pediatrics as my career was unconsciously due to the realization that children are very accepting. My personality traits that are considered deficits in the adult world of communication are actually strengths when dealing with a scared child. I can allow myself to get very silly with a child to get them giggling and no longer afraid of my exam. The depth of gratitude expressed by many of the parents of these children has been overwhelming and incredibly rewarding.

Another of my "Aspie" skills is being very detail-oriented. Sometimes this focus allows me to pick up a single clue that leads to a diagnosis that otherwise might have been missed. This skill is also the one that causes me the most stress, however, because it means that I am frequently one or two hours behind schedule. The more burdened I become by time-pressure (a notorious detriment to most of us with ASD), the less efficient I become. I suffer daily anxiety struggling to balance family life with the hours of paperwork and indirect patient care tasks that I still have to do during my personal time because I cannot complete them during regular work hours. Physical exhaustion and emotional guilt are my constant companions.

I do not tell most parents that I have ASD. However, when I do share this personal information with parents of children who have ASD, the sense of appreciation and acceptance is slowly beginning to give me confidence in myself as a person and as a pediatrician. I am becoming more hopeful that some of my emotional scars might eventually fade away.

This journey of personal and professional self-discovery is something that, until now, I have kept deep inside myself. However, by taking the risk of putting aside "normal professional boundaries," I hope to foster a better understanding about the struggles that all of us on the spectrum experience to some degree or other. All of my struggles to survive in a career that relies on social skills have led me to the unique position where I am able to understand my special patients in a way that no other pediatrician can. Perhaps in that realization, I have finally discovered my own special career niche.

Rochelle Caruso Flynn, MD, FAAP, started her career as a pediatrician specializing in pediatric emergency medicine, but with her husband's encouragement, Rochelle decided to make a career change to general pediatrics. Then, in May 2013, her world once again turned upside down when she was diagnosed with autism. Rather than providing relief as the explanation for many of her life's challenges, Flynn now finds herself reevaluating her entire life from this new perspective.

Read more


When Do Signs of Autism Appear?

By Gen Cohen

Uncovering the Early Signs of Autism

Read more


Autism Research Institute's Approach to Autism

By Dallas Stevens

The Autism Research Institute's Approach to Autism

by Dr. Stephen Edelson

We continue to gain insight into the many aspects of autism from research studies and from individuals on the spectrum. The more we know about autism, the more we realize that we need to expand how we think about and treat these individuals. It’s been a long-held commitment at the Autism Research Institute (ARI) that, along with identifying what can be done, we must also consider with great care what should be done to aid those on the autism spectrum. Fifty years ago we were among very few voices seriously talking about autism; today, many more contemplate what it means to treat – or strive to treat – persons with autism, especially as it is now recognized to be a very common condition. But, despite increased interest in research and clinical care, there are great gaps in our knowledge of the causes and care for persons with autism. An understanding of autism and the development and provision of appropriate care for affected individuals and their families is, in our view, one of the central challenges of contemporary medicine.

ARI’s nearly fifty-year history of research and advocacy has placed us in a unique position in several important regards: (1) to fund particularly innovative basic and clinical research efforts with the potential for high impact; (2) to support outstanding clinical programs; (3) to develop and make widely available educational materials regarding diverse aspects of autism; and (4) to facilitate communication on all aspects of autism between individuals with autism, families, clinicians, researchers, and policy makers.

Who is the leadership of the ARI and what is its central operational philosophy?

Today ARI is a cohesive and communicative network of researchers, adults on the spectrum, parents, and professionals – all of whom support an all-encompassing approach to understanding autism and promoting high quality education, medical care, and life opportunities for individuals on the spectrum and support for their families. ARI’s staff and Board of Directors consist of researchers, individuals on the autism spectrum, parents, and practitioners. Our Scientific Advisory Panel includes researchers and science-oriented clinicians with diverse expertise, including scholars in neurology, medical genetics, biochemistry, nutrition, psychology, and education, all of whom are active in the organization and passionate about our mission. We do not consider that a single perspective will be sufficient to understand and help all, or even the majority, of individuals on the autism spectrum. We therefore embrace inclusive discussion to advance our mission. Our record supports the value of this approach.

How does ARI view research on the underlying causes of autism?

In his seminal book Infantile Autism, published in 1964, ARI’s founder Dr. Bernard Rimland argued that autism was biologically based; this was a pioneering position at the time. He was also one of the first professionals to propose a possible genetic basis for autism. A few years later, in 1967, he expanded his argument to include environmental insults as possible contributory factors. Over the past fifty years, diverse types of genetic research have indicated that there are different types of genetic contributions to the causation of autism, ranging from some chromosomal causes, to some single gene disorders associated with autism, to forms that have a partial and still poorly understood genetic basis. A growing number of studies, especially in the past ten years, indicate that environmental factors, largely not understood, also contribute significantly to autism causation. Clearly, much more work needs to be done to clarify the underpinnings of autism; while great progress has been made, our understanding of the causes of autism is still quite limited and our understanding of the biology of autism is even more deficient.

Can interventions help those with autism?

ARI was the first organization to argue unequivocally that those on the spectrum can benefit from intervention, coining the phrase “Autism Is Treatable.” With enough published peer-reviewed studies, more interventions will soon become evidence-based and be accepted by the autism and medical communities in addition to government agencies and health insurance companies. ARI takes the position that one can live a healthy lifestyle by targeting specific physical problems. Many, if not most, people with autism may need some form of therapy to treat their physical health conditions. These treatments may be neurologically based (e.g., to stop seizure activity), medically based (e.g., to reduce gastroesophageal reflux or severe constipation), nutritionally based (e.g., to normalize a nutritional deficiency), or sensory based (e.g., to reduce hyper-sensitivities). Medical approaches augment educational and behavioral approaches that are often needed and can also be helpful.

Some adults on the spectrum state that it is not necessary to provide them with help or assistance—that they do not need to be “treated.” They embrace the diagnosis and are pleased with their overall sense of being. These individuals very much want to be accepted for who they are. ARI’s Board of Directors, staff, and those in our network respect the right of those on the spectrum to choose whether or not to access treatment.

What is ARI doing with regard to current and future research?

ARI conducts research, collaborates with other research centers, and awards grants to support “research that makes a difference.” (Dr. Rimland’s noteworthy slogan). Areas of interest include behavioral analysis, sensory processing, genetics, nutrition, and gastrointestinal, metabolic, neurologic, and immunologic aspects of autism. Both scientific and medical advances have resulted from the research awards that we have provided.

Having access to tissues is crucial to many types of biomedical research. We financially support a brain-tissue bank at the University of Maryland, as well as another tissue repository at the pediatric gastroenterology section of the Massachusetts General Hospital.

One of the reasons for the slow progress in finding solutions is the disconnect among researchers in the various disciplines mentioned above. At ARI we continually work to develop productive lines of communication among researchers within and between various fields by inviting them to participate on our Scientific Advisory Panel. We sponsor regular conference call meetings with these committee members and invite other scientists to join in on the conversation. In addition, we organize multidisciplinary national and regional Think Tanks each year and publish a science review newsletter summarizing these discussions and other advances.

How does ARI help those with autism and their families?

Our efforts at ARI are also focused on disseminating relevant information about autism to those on the spectrum and their families. We do this by providing assessment forms as well as informative articles and videos on our popular website, autism.com. We also broadcast live presentations on the Internet on an almost weekly basis. In addition, we publish three different e-newsletters on a regular basis, post relevant information daily on social media, and manage a toll-free information call center.

ARI is active in distributing information to families throughout the world. ARI is one of a handful of autism-related NGO members at the United Nations. Many of our evaluation forms and articles are translated into other languages. We co-sponsor an international three-day conference in Moscow each year, and we helped send representatives to present talks in various parts of the world, including Colombia, Ghana, India, the Philippines, and Ukraine.

What is ARI doing with respect to adults with autism?

More than a decade ago, ARI started to expand its efforts to include adults on the spectrum. In 2007, we organized and edited a book with Jessica Kingsley Publishers on adult-related issues. We also offered lectures on adult-related issues at our past conferences, and currently in our live webinars. Some of these presentations are uploaded to YouTube.

A few years ago we formalized an adult program within ARI called the Autistic Global Initiative (AGI), and we employ adults on the spectrum to run it. They provide self-advocacy mentorship to young adults, publish a quarterly e-newsletter, produce film documentaries (trauma, sensory sensitivities), and develop trainings (residential care, employment). At their 50th anniversary conference this year, the Autism Society of America honored ARI’s AGI program for “the advancement, effective transition, and meaningful employment of people with autism.” We are proud of our record of advocacy for adults with autism.

What is ARI’s position on the possibility of recovery from autism?

We hear reports by parents and professionals regarding recovery in some individuals on the spectrum based on many of the interventions mentioned earlier. There are many ways to interpret the word “recovery,” and we view recovery in the same way as the medical community—that is, as a managed state, similar to recovery from addiction or cancer. Individuals receiving appropriate treatment and support will retain their unique and wonderful personality, but they will be better able to manage life and feel physically well. Although there may still be some residual “autistic” traits, many of these individuals have a positive prognosis to live independently, be fully employed, develop personal relationships, and live a fulfilling life. Over the years, we have conducted surveys on these unique individuals, produced documentaries and a book describing cases, and even assisted NIMH in recruiting participants for a study on those who make unusual progress beyond their initial prognosis.


What is ARI doing to support clinicians who care for persons with autism?

To expedite the use of evidence-based treatments, ARI also disseminates science-based information directly to healthcare professionals. We work jointly with the Cleveland Clinic Center for Continuing Education and offer free online CME films for providers on diverse aspects of autism. We also distribute a bimonthly e-newsletter to inform more than 6,000 physicians, nurses, obstetricians, and parents on the latest medical advances. Recently, ARI has continued its efforts in support of education of health professionals through a new initiative: the development of a new scholarly work, to be published by Jessica Kingsley Publishers, on understanding and treating self-injurious behaviors, an often devastating phenotype that has heretofore received inadequate attention.

What’s next for the ARI?

In the year to come we plan to continue developing more innovative ways to support the autism community through networking, supporting research, and disseminating relevant information at a global level. We also plan to maintain our current programs and projects. To learn more about ARI, please read our list of accomplishments in 2015 at:www.ARIAccomplishments.com. Lists of accomplishments in previous years can be found on our website.

How can you help?

Most of our financial support comes directly from the autism community, especially from parents of children of all ages and their relatives. Unlike most autism organizations, we are independent of outside influence. We do not accept grants from government agencies or donations from big Pharma or insurance companies. In addition, we do not accept contributions from providers or promote autism-related products and services.

If you agree with our approach to autism and value the work that we’ve done, I urge you to support our continued efforts by making a contribution to ARI and by sharing our information with those on the spectrum, parents, and professionals.


Please consider supporting our efforts.

Read more


A Beautiful Friendship: Two Nonverbal Teens With Autism

By Scott Morris

We are more than just a baby sunglasses company. An important part of our business is our commitment to donate a portion of all sales to autism charity. In keeping with that, we also like to blog about inspiring stories from the autism community. This one comes from the Huffington Post and the Autism Research Center in San Diego.

Read more

Recent Articles

Categories