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February 11, 2015
Autism Resource Specialist Profiles: Neal Goodman from Boston Children’s Hospital

Tags: Resource Guide

Why did you choose to become an ARS?

I have a deep, lifelong passion for serving individuals with neurodevelopmental disorders.  It was definitely my father’s architecture practice that sparked my early interest in this field.  The majority of his clients were nonprofit and social service organizations serving individuals with disabilities and mental illness.  Growing up in New York in the 1970s, I used to accompany my dad on business trips to building sites he designed, thus giving me my earliest exposure to the field.

For three decades, I’ve served people with neurodevelopmental disorders in a wide range of rehabilitation, education, and residential settings. Choosing to become an ARS at Boston Children’s Hospital in the Developmental Medicine Center was an obvious choice, since the role has enabled me to continue providing high quality family support to a wide range of children with Autism Spectrum Disorders in a dynamic and exciting institution.

Describe your clinic.

The Autism Spectrum Center is a multi-departmental and multidisciplinary effort at Boston Children’s Hospital integrating the expertise of Neurology, Developmental Medicine, Psychiatry, Genetics and Communication Enhancement.

A key part of the Autism Spectrum Center’s mission is to respond more effectively to the needs of individuals with autism spectrum disorders and their families. Our current goals include facilitating access for appointments with appropriate providers, developing the best models of care and using them consistently across all of our departments, providing ongoing education for our staff, collaborating with translational research efforts, and improving patient and family experiences throughout the hospital.

As part of Boston Children’s Autism Spectrum Center, the Developmental Medicine Center, where I primarily work, provides a broad range of diagnostic, treatment, and consultation services for children with autism spectrum disorders (ASD) and their families. Services are available for children from infancy through adolescence who have a known or suspected ASD diagnosis.

What are the most important roles that you play in your clinic?

After the child and family meets with their doctor for a developmental evaluation or follow-up appointment, my role is to help families identify and access various services and community resources their child needs in keeping with the medical team's clinical recommendations.

One of my top priorities is to support families with children newly diagnosed on the autism spectrum.  I typically follow up with families by phone and occasionally in person to answer any questions they might have regarding resources and services for their child.  I offer them a personalized orientation to the community services available to them (for example, their local Autism Support Center).

In addition to handling resource referrals and following up with families of newly diagnosed children, I actively participate in various work groups to help build up and expand our current and very exciting Autism Spectrum Center at Boston Children’s.  One example of a project I’ve been assisting with is helping our team develop  an “app” for mobile devices that will enable parents to preview medical procedures step-by-step with their child in an engaging, easy to understand story format paired with images.  The app is intended to help children with ASD and their families prepare more effectively for their upcoming hospital visits.

One more important task I perform is overseeing the email message system we use to inform and update families of children with ASD about the latest research in Autism as well as important local resources.

What resources do families find the most useful?

Just as each child with ASD is unique, so is each family, so the types of resources families find most useful tends to vary from family-to-family, depending on their situation.  Several of the most commonly, though by no means only, requested, resources families find most useful are home behavioral therapy services, parent support groups, and social skills groups designed to teach their child functional communication and social interaction skills.

What are the best ways families can stay informed about current resources?

To stay well informed about current resources,  I usually recommend that families connect with several important local services, especially their local Autism Support Center and Parent Information Center, which in Massachusetts is the Federation for Children with Special Needs,   The Autism Support Centers provide information and referrals to local resources and also run various parent support groups.  The Federation is a great organization for helping parents connect with one another and find Education Advocates to assist them in obtaining the special education services their child needs in their school district.

Anything additional you would like people to know

I often say to families that the way you look for resources is just as important as what resources you’re looking for.  This is why I recommend that families use a structured, organized approach to finding what they need.

For example, many families find looking for behavioral therapy to be extremely challenging because the typical wait time to connect with a clinician may be 1-to-3 months or longer, depending on the therapist’s schedule availability (afternoons and evenings tend to fill up quickly!), insurance/cost issues, and other variables.  Given this situation, I recommend that families deliberately call at least 3-to-5 therapist names or as many as necessary in order to comparison shop and determine who is most readily available and who the best fit is for their child.