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The gaps in our national-level autism data

by Anne Roux

Posted on October 8, 2015
Wavy road

I admit to feeling a thrill when emails come in about the National Autism Indicators Report. The question/answer exchanges with our readers often speak to our reasons for writing the report. Like this comment:

I was very surprised and concerned to see that aggression and self-injurious behavior are not mentioned in the report. ...There is a significant subset of individuals with ASD for whom aggression and/or self-injury are huge challenges. Engaging in such behavior can affect housing, employment, social and community participation, post-secondary opportunities, health and mental health. Finding effective treatments for aggression and self-injurious behavior is vital for many of us. This is definitely an area where a research gap exists.

Exactly! We absolutely agree with the emailer that a research gap exists here. Aggression and self-injurious behaviors are indeed an important challenge for some transition-age youth with autism. The problem is that we do not have adequate national-level data to report for either of these topics. On a related note, we have little data on co-occurring health and mental health conditions, school discipline, criminal justice involvement, and a host of other topics that also have potential to affect outcomes. We have an incomplete picture of the challenges transition-age youth with autism face.

Scientific journal articles describe issues like aggression and self-injurious behavior and illuminate possible interventions. That’s helpful. But what we lack is an accurate picture of how many people with autism also exhibit aggression and self-injurious behavior, how it affects their lives, what types of help they need, and whether they have access to that help. Both types of information are important, but national-level data has the potential to establish priorities and drive planning for services and policy. This is what we need to help those who are challenged by these issues right now, today.

The Indicators Report itself is designed to call attention to these gaps in our national-level data. Without a rich array of national level indicators we lack the evidence-base needed to inform decisions and systems change efforts aimed at improving life for people affected by autism. Unfortunately, this is exactly our national situation – a lack of adequate gauges. We have very few useful indicators that report specifically about the experiences of people with autism. 

The reader wrote back later that day and commented:

…a lack of solid data makes it difficult to know the scope of the problem or its effects on individuals and families.

Yes, it does.

Read more about research gaps in the “What next?... Looking Ahead” chapter of the National Autism Indicators Report

Anne Roux Anne Roux, MPH, MA is a nationally renowned autism researcher, author and family advocate. She leads the production of our National Autism Indicators Report series and other publications.