Rush and the ‘Transformative’ SPARK Autism Study

aarts-spark-heerwagenBy Katy Heerwagen

At the Autism Assessment, Research, Treatment and Services (AARTS) Center, we see a wide range of individuals with autism spectrum disorder. As a lifespan center, we may see a 12-month-old for an evaluation and hours later provide therapy for a man in his 40s. In a given day, I can deliver play-based interventions to a nonverbal 2-year-old boy in the morning and provide career-focused counseling to a 27-year-old woman exploring technology jobs in the afternoon. We encounter individuals who have been able to develop a comprehensive program of services and those who continuously struggle to access often-costly resources.

In each of my experiences, I return to the same thought: How can a single disorder look so vastly different for every individual I see?

‘So much we do not know’

This question is at the center of a new research initiative led by members of various departments here at Rush. The SPARK study — Simons Foundation Powering Autism Research for Knowledge — is, at its core, an ambitious, first-of-its-kind autism genetics study aiming to involve 50,000 individuals with autism and their family members. The goal is simple: to advance our understanding of the genetic components of autism and speed up autism research. In adopting this mission, we acknowledge that there is still so much we do not know, and that we need the investment of tens of thousands of individuals to answer the many questions that remain.

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Sex Ed and Autism

rachel-loftin-aartsBy Rachel Loftin, PhD

Although it is a crucial topic in health care, people are often reluctant to talk about the sex education needs of people with autism spectrum disorder.

While typically developing people learn a lot about sexuality and romantic relationships from their peers, teens with ASD are much less likely to have friends who talk about these topics. Many people with ASD do not pick up on unwritten rules for how to behave in social situations, and sexually charged interactions are particularly challenging to understand.

The social differences in ASD can limit the amount and quality of the sexuality information acquired and can make it challenging to understand the complex dynamics of intimate relationships.

When people with ASD unwittingly break social rules, they can put themselves at risk for victimization or may be misconstrued as sexually deviant or even predatory. Unfortunately, these situations sometimes result in legal action. Even when problem behaviors are not illegal, inappropriate sexual behaviors can limit employment and inclusion opportunities with individuals with ASD.

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