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Psychiatrist reflects on 20 years of treating children with autism

By Dr. Ankur Desai

The number of people diagnosed with autism has grown in the 20 years that I’ve been a child and adolescent psychiatrist, and so has my understanding of the disorder.

I first learned about autism in my Growth and Development Course when I was a medical student 20 years ago. The classic presentation of the disorder was described then as “an individual with pervasive social and communication skills deficits and a history of limited, circumscribed interests and repetitive, stereotypical mannerisms.”

I’ll admit: Back then, I was uncertain how to interact with patients with autism, and didn’t understand how they would be able to grow and thrive in society. However, I had the opportunity to work with children with autism as a medical student, psychiatry resident, and in more depth as a child and adolescent psychiatry fellow. During those six years of training, I learned more about the subtle nuances of autism. I realized that the disorder wasn’t the narrow outlook described above. Instead, I saw first-hand that the autism community encompasses a broad variety of individuals from different walks of life, each with their own strengths and challenges; a true spectrum of abilities and deficits.

The Number of Patients Diagnosed with Autism Is Growing

The prevalence of autism over the last 15-20 years has grown exponentially. When I started medical school, about 1 in 1,000 people were diagnosed with the disorder, and it affected four times as many males than females. In 2000 when I was a resident, autism affected about 1 in 155. Now, the condition affects 1 in 59 children, according to the Centers for Disease Control and Prevention (CDC). Startlingly, in New Jersey, autism affects 1 in 34 children, and more specifically, 1 in 22 boys.

I’m frequently asked why the number of children diagnosed with autism continues to increase. The answer is complex. There are multiple reasons for this increase:

  • Our awareness of autism and our ability to identify its signs and symptoms has improved, leading to a higher rate of diagnosis
  • It’s likely that people with milder forms of autism who weren’t diagnosed had children of their own who meet the current definition
  • Environmental factors, such as exposure to chemicals, medications, alcohol, and other substances and conditions that we only partially understand

Redefining Autism

In 2015, the American Psychiatric Association released the fifth edition of its “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5). This is the standard reference guide that health care providers use to diagnose mental and behavioral conditions, including autism. In this updated version of the manual, the condition Asperger’s syndrome was removed and its symptoms were folded into a broader category of autism spectrum disorders (ASD). To be diagnosed with autism spectrum disorder, patients must have three symptoms (called criteria) regarding socialization and communication and two symptoms of restrictive or repetitive behaviors. With improved awareness of the diagnostic criteria and assessment tools that can identify potential signs of autism at younger ages, children can be referred to the appropriate therapeutic services at earlier stages of their development. This enables us to improve the overall trajectory of their development and progress in school and their long-term prognosis for life.

More Services for Better Treatment

Over the last 15-20 years, there’s been a concerted effort nationwide to integrate behavioral health services to address treatment needs related to ASD and other intellectual and developmental disabilities. There is a growing focus on linking children who exhibit developmental delays involving social skills and speech and language skills with early intervention services and, if appropriate, transition them to specialized preschool programs. These services can provide critical, evidenced-based services, such as social skills training, applied behavioral analysis, and speech and language therapy, which are important for optimizing their progress in school and in the community.

As a parent, it’s only natural to want the best for your child, and it can sometimes be difficult to understand the recommendations and “take home” points from an autism evaluation. If your medical provider indicates that your child may meet the criteria for autism, you may want to get a goal-standard evaluation, such as an Autism Diagnostic Inventory or Autism Diagnosis Observation Schedule, as the next step in the assessment process. These are assessments that are used to determine if someone meets diagnostic criteria for ASD. You also can request a child study team evaluation from your child’s school. If the child study team agrees to do an assessment for individualized education program (IEP) services as part of their comprehensive evaluation, an autism evaluation could be included.

In addition to getting the right diagnosis and the right treatment services in place, talk with your provider about your fears and concerns and identify key members of your support system. Some helpful interventions include looking for support groups in your area or tapping into the SPAN Parent Advocacy Network for help. Resources for children with autism are expanding and access is improving. You can improve your child’s overall prognosis by getting services in place as early as possible. With the right interventions, children with autism can enjoy a great quality of life and develop the tools they need to achieve their goals.

Looking Back – And Ahead

My perspective on autism has changed dramatically over the past two decades. My understanding of autism spectrum disorder is far deeper, and I’m optimistic that patients on the spectrum will live positive, productive lives. In my practice, I have seen patients with autism successfully graduate high school and go on to earn college degrees. I’ve seen patients secure jobs through educational and vocational training programs, and I look forward to seeing these patients get married and start families of their own. In fact, the tenacity and intensity that’s inherent in many individuals with autism is one of the most positive aspects of the disorder.

With increasing awareness and ongoing development of behavioral health programs for children with autism, there are more options for these individuals to learn, earn, build relationships, and become positive, admirable role models.

Ankur Desai, MD, is a board-certified child and adolescent psychiatrist on staff at CentraState Medical Center in Freehold Township. He also maintains a private practice where he provides outpatient medication management and psychotherapy services for children and adults. Dr. Desai can be reached by calling 866-CENTRA7.

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