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Your ATN@Work: Transitioning teens with autism to adult care

Our Autism Treatment Network center in Pittsburgh has a unique program for fostering the transition from pediatric to adult health care

By Jessica Kettel, a child and adolescent psychiatrist at the University of Pittsburgh Medical Center, one of 14 sites in the Autism Speaks Autism Treatment Network (ATN). Dr. Kettel is also the Pittsburgh ATN center’s co-principal investigator.  

As many readers of this blog column know well, autism can add to the challenges of being a teenager – as well as those of parenting a teenager. On top of puberty’s social and physical changes, you and your teen are likely preoccupied with pending graduations and future plans for greater independence.

A particularly important challenge – and one too often overlooked – is the importance of finding a new doctor when the pediatrician says it’s time to move on.

Primary care providers play vital roles in assessing your child’s health and coordinating the care of specialists. This is particularly important for patients who have autism, as the condition is often associated with a broad range of medical and behavioral issues.

It can be scary to think of losing the doctor who has long ensured that everyone was working together to ensure your child’s health and well being.

At our ATN center, we encourage families to begin thinking about the transition from pediatric to adult healthcare when their children are in their mid-teens. It can take some time to find a comfortable fit with a doctor who can meet your needs. The difficulty may increase with the number of physical and mental health issues that affect your teen.

Coordinating with your child’s current provider

As we work with transitioning families, we suggest they start by talking with their child’s current primary-care provider. Some pediatric practices stop seeing adolescents as soon as they turn 18 (when they’re legally considered adults). Others will continue to see patients through age 21 or even older.

And some family physicians and sub-specialists are comfortable providing lifelong care.

Our ATN site, for example, has a significant number of child and adolescent psychiatric staff. These specialists have the flexibility to see patients into early adulthood while guiding their transition to autism specialists within our adult psychiatric clinic.

Our shared electronic medical record helps smooth the transition. However, it’s the shared focus on a family’s needs that truly makes the difference.

From anxiety to warm welcome
I recall the exceptional hesitancy of one young man – and his parents – when we approached the time for him to leave our child and adolescent clinic. He’d been very active in many of our programs for close to a decade. Knowing their concerns, we arranged for the family to visit our adult clinic. The program director provided them with a tour that included meeting the psychiatrist who’d be his new doctor.

We witnessed an easy transition when it came time for his first appointment with his new doctor. The family even stopped by for another warm visit with the program director.

The perk of PERC
Here at the University of Pittsburgh, we’re fortunate to have the Progressive Evaluation and Referral Center (PERC). It’s a medical practice staffed by doctors trained in both pediatrics and adult medicine. In particular, they specialize in working with individuals with life-long conditions that begin in childhood – including autism.

Our ATN site has an active collaboration with these doctors that we find is especially important for patients who have autism associated with complex medical needs.

This collaboration extends to families who have a pediatrician or other primary care provider outside our ATN Center. The PERC staff provides letters of introduction to both the family and their pediatrician, clearly outlining the clinic’s services. This introduction includes a clear outline of the records that the PERC clinic will need before the patient’s first appointment.

This allows that first clinic visit to be less about answering questions and more about starting a relationship!

A new relationship is born
Recently, the mother of one of my patients told me about a memorable visit to PERC. Her son had a 10-minute conversation with his new doctor. This was unprecedented for a young man who had always been so agitated by medical visits that many of the appointments had to be cut short. In his mother’s words, it was “almost a miracle.”

I’m especially heartened by such stories because the ultimate goal of transition is for the patient with autism to establish a more independent relationship with his or her doctor – with parents taking a step back.

Through email and phone calls, the PERC clinic staff continues to communicate with our staff here at our ATN site. This ongoing communication can make a huge difference – particularly when medical issues produce new autism-related behavioral challenges, and vice versa.

I recall another young man affected by both autism and intellectual disability who also had cancer during childhood. He began to have recurring incontinence after graduating from high school and starting in an adult day program. Through consultations between our ATN staff and his doctors at PERC, we quickly saw that this was his way of showing he needed more behavioral support – not a big medical work-up.

At our ATN clinic, we share the Autism Treatment Network’s mission of helping families prepare their children for life’s “big steps,” including the transition to as independent and fulfilling an adulthood as is possible. Finding the right doctors for your “almost-adult” child with autism is an area where we can help.

We want to thank the Autism Speaks community for supporting this work.

Also see:

Autism Speaks Transition Tool Kit

Your ATN@Work: Improving healthcare for adults with autism

Your ATN@Work in Toronto: A lifelong health watch table for autism

* Learn more about the Autism Speaks Autism Treatment Network here.

* Find the ATN center nearest you here.
* Explore our archive of ATN expert-advice blogs and news stories 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.