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Keeping it Real: Understanding the Research Priorities of the Autism Community

Author: 
Cheryl Cohen
Online Community Director
Interactive Autism Network
Posted: 
November 4, 2016

During the early days of fall 2016, we asked members of our new Satellite Community Advisory Council to rate their autism research priorities. The Council is made up of volunteers who help IAN research staff stay in touch with the changing needs of the autism community and help with research activities.

Fifty-two members responded. The majority of those who responded were parents of children (younger than 18) with autism spectrum disorder (ASD), followed by parents or guardians of  adults with ASD, adults with ASD, and professionals involved in the autism field. 

We asked people to rate topics in autism research that were important to them on a scale of 1 to 10, with 1 being less important and 10 being most important. The top ten priorities for the entire group that responded to the survey are listed below. The number in parenthesis is the average score for the entire group:

  1. Work (9.02)
  2. Social Skills/Interaction (8.73)
  3. Education (8.62)
  4. Sensory Issues (8.52)
  5. Mental Health Conditions (8.48)
  6. Transitioning to Independent Living (8.42)
  7. Community Services (8.19)
  8. Healthcare Access (8.08)
  9. Self-Advocacy (7.75)
  10. General Adult Issues (7.67)

People’s research priorities were different based on their connection to the autism community. For adults with autism, for example, the top priorities were (in order of importance): work, sensory issues, mental health conditions, education, general adult issues, and bullying/discrimination. For parents of children (younger than 18), the priorities were different, they included: work, social skills, education, mental health conditions, speech/language, and sensory issues.

Work: A top priority

The table that follows shows how the different groups reported different priorities. Note that this was an informal poll and we can’t generalize these results to other groups. We thought that it was interesting that the top priority for the group overall was work. Note that six people who were involved in the autism community but were not parents or adults with ASD were included in the All Respondents column.

Table 1. Top 10 Research Priorities

Rank All Respondents (n=52) Adults with ASD (n=8) Parents of Child with ASD (n=32) Parents of Adult with ASD (n=6)

1

Work

Work

Work

Federal /State Assistance Programs

2

Social Skills /Interaction

Sensory Issues

Social Skills /Interaction

Community Services

3

Education

Mental Health Conditions

Education

Self-Injurious /Aggressive Behaviors

4

Sensory Issues

Education

Mental Health Conditions

Work

5

Mental Health Conditions

General Adult Issues

Speech & Language

Transitioning to Independent Living

6

Transitioning to Independent Living

Bullying / Discrimination

Sensory Issues

Education

7

Community Services

Self-Advocacy

Transitioning to Independent Living

Social Skills /Interaction

8

Healthcare Access

Healthcare Access

Community Services

Financial Effects of ASD

9

Bullying /Discrimination

Sleep

Healthcare Access

Healthcare Access

10

Speech & Language

Community Services

Bullying /Discrimination

Speech & Language

Recognizing different perspectives

There are many different viewpoints within the autism community, and researchers need to be aware of and sensitive to these perspectives. For example, here are two comments from our respondents:

There's too much on controlling autistic people (dealing with 'challenging behaviors’), and not enough on empowering them, or even treating them with basic human dignity and respect. We're not here to make other people’s lives easier by being easier to manage (that kind of approach is cruel and demeaning).
I think it would help to learn more about familial factors that contribute to positive or negative outcomes for individuals with ASD. For example, what parenting strategies or approaches promote independent functioning for children with ASD and how to do we get that information to parents. I think parent empowerment models, where parents reach out and help other parents, are promising and warrant further research.

Thanks!

We’d like to extend a big thank you to all of the members of our Satellite Community Advisory Council who completed this survey. We look forward to working with you in the future.