By: Erin Gibbons, Ph.D.
Pediatric Neuropsychologist, NESCA
In April, I had the good fortune to attend the Profound Autism Summit, a multidisciplinary conference hosted by the Profound Autism Alliance and Nashoba Learning Group. Presentations were given by a variety of specialists from behavior analysts to pediatricians to speech pathologists… I am eager to apply my newfound knowledge and help educate those around me about this important and often overlooked population within the autism community.
In my role as a neuropsychologist, I often see clients with autism spectrum disorder (ASD). As its name implies, ASD represents a broad spectrum of individuals whose strengths, weaknesses, and behaviors vary widely. During the 1980s and 1990s, much of the research devoted to ASD included individuals with significant challenges, such as lack of speech, self-injurious behaviors, and limited independent living skills. Over the last 20 years or so; however, there has been a shift in the research such that most of the recent studies exclude autistic individuals who are nonverbal and/or exhibit unsafe behaviors. As a result, this portion of the autism community has become increasingly marginalized, under-researched, under-funded, and under-served. This was part of the impetus for the Profound Autism Alliance, an organization created by parents and other activists who saw a need for more awareness of and education about the needs of their dependents.
The term profound autism is used to describe autistic individuals who require 24/7 care throughout their lives. Individuals who fit criteria for profound autism experience a unique set of challenges that make them one of the most vulnerable communities in our society. The statistics show that profoundly autistic individuals are significantly underserved in preventative medical and dental care because they have such difficulty tolerating the appointments. Through the Summit I attended, I learned about local organizations that are working to improve access to healthcare for this population. The Lurie Center at MGH offers behaviorally-based exposure treatments so that profoundly autistic patients learn the skills to endure what many people would consider simple procedures, such as blood draws. The Arc is pairing with local medical schools to improve the training of medical students in how to work effectively with autistic patients. I was inspired by so many individuals and felt moved to do my part as well.
I have been working with profoundly autistic individuals for over 20 years. As a college student, I worked as a behavior therapist at a residential school for students with ASD and other developmental disabilities. Throughout graduate school and into my early career years, I turned my focus to neuropsychological testing and have been fortunate to continue supporting the autistic community in this capacity. Having worked at NESCA for almost 15 years, I provide evaluations to children, adolescents, and young adults with profound autism, many of whom have been unfairly deemed “untestable.” It is true that many of our standardized assessment tools were not developed for individuals who are nonverbal or have limited fine motor precision, for example. However, test scores are not the only way to capture a student’s strengths and potential. Providing quality evaluations for profoundly autistic students is incredibly important. Not only can the findings help caregivers and educators better understand the student’s learning style, but the information helps create road maps for the future, a key component of NESCA reports.
Through my work as a neuropsychologist, I am dedicated to supporting families of profoundly autistic individuals, helping them to find the supports and services they need. Further, I strive to educate schools, medical professionals, and other providers about the unique needs of this population. I learned an immense amount at the Summit I attended and felt honored to be further educated by some of the top researchers in the world of ASD. Please read more about the Profound Autism Alliance here: www.profoundautism.org.
About the Author
Since 2011, Dr. Gibbons has been a trusted expert at NESCA where she evaluates children presenting with a range of attentional, learning,
and developmental disabilities. She has a particular interest in children with autism spectrum disorders, intellectual disabilities, and those with complex medical histories. In addition, she evaluates adults who have concerns about whether they meet criteria for an ASD or ADHD diagnosis.
If you are interested in booking an evaluation with a NESCA neuropsychologist/clinician, please fill out and submit our online intake form.
Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton, Hingham, and Plainville, Massachusetts; Londonderry, New Hampshire; and staff in Burlington, Vermont and Brooklyn, NY, serving clients from preschool through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.
