Read Full Text: Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data (Free to access)
Journal: Autism
Year Published: 2015
Ranked 46th on our 2015-2020 list of the 100 most influential OT-related articles
CEU Podcast: Supporting Adults on the Spectrum with Meg Proctor
Here’s the dilemma:
The number of adults diagnosed with autism is rising. Yet, we currently have very few evidence-based interventions to offer this population.
We seem to be falling short of truly supporting autistic adults. We need to do better, not just by addressing their challenges, but also by bolstering their unique strengths.
This article is going to push you to think big-picture about the unmet needs of autistic adults—and, hopefully, it will help you address both the challenges and strengths inherent to being neurodivergent in a world that is built for neurotypicals. Our goal is to support you as an OT, so you can help autistic adults live a life they love.
Let’s dive in.
The rising numbers and lacking research
Autism spectrum disorder (ASD) is one of the more common conditions seen by pediatric occupational therapists. According to the CDC, 1 in 54 children will be diagnosed with ASD!
With some basic extrapolation, that means in about 18 years, 1 in 54 of people headed into adulthood will be diagnosed with autism. But, the difference in attention given to children vs. adults on the spectrum. For example, the CDC didn’t run its first survey of how many US adults are diagnosed with autism until 2017)!
From a funding perspective, things are similarly bleak. Research initiatives examining the unique needs of autistic adults, including the transition from childhood to adulthood, only receive 2% of available research funds from the Interagency Autism Coordinating Committee.
The problem with how “outcomes” have historically been categorized
This paper briefly touches on some of the paradigm shifts occurring in how we understand autism and autism supports.
Historically, “outcomes” for this population have been narrowly focused on functional language, independent living, employment, and traditional understanding of social engagement.
With the exception of functional language (which most samples indicate is obtained by about 70-80% of people with autism, the aforementioned outcomes have been reported to be “poor.”
But, maybe we’ve been getting it wrong. Maybe our understanding of quality of life has been too narrow? Maybe we haven’t listened closely enough to the voices of autistic people? Maybe the biggest challenges are actually at the environment/societal level, where we haven’t made enough room for these people’s strengths to shine.
This paper contributes to this paradigm shift by listening to the lived experiences and priorities of autistic individuals:
What was the research question being studied in this paper?
The researchers posed two main questions in their work.
First, they wanted to gain a clearer understanding of the lived experiences of autistic adults in the following areas:
- Education
- Employment
- Living situation
- Financial support
- Adaptive skills
- Strengths and special interests
- Physical and mental health
- Treatment and service use
The second goal was to understand autistic adults’ priorities regarding future research and funding initiatives.
Who was included in this study?
This study looked at adults on the spectrum. The only inclusionary criteria were:
- Being registered with the Interactive Autism Network (IAN)
- Being over the age of 18
The respondents were part of two groups. One group contained people who self-responded, while the other group contained subjects whose names were submitted by “legally authorized representatives,” such as parents and caregivers.
The group ended up being markedly different from previously studied cohorts, not only because the majority were women (64%), but also because the majority (73%) weren’t diagnosed until adolescence or adulthood (which implies a cohort of more mildly affected adults).
What outcome measures were used ?
The researchers created their own surveys, which were disseminated through the IAN website.
You can see the surveys here…
What were the results?
This study presented lots of data to sift through, based on the surveys they had participants fill out. Here are some key data sets:
Education and vocation
- About half of those participants who self-reported had paid employment, while the level for those whose legal guardians responded was closer to a quarter.
- Interestingly, both groups (self-reporting at 72% and legal guardian group reporting at 43%) reported wanting more work hours.
- 42% of the self-report group and 20% of the legal representatives group reported facing discrimination in the work place.
Residential settings and financial support
- In the self-reporting group, about 20% lived independently, and 47% reported living with a spouse or partner.
- In the legal guardian group, about only about 7% lived alone, with most living with their parents.
Abilities and special interests
- One thing that was super interesting was that respondents (particularly in the self-reporting group) were able to identify their strengths that supported them in work, education, and hobbies. Some examples of these skills include:
- Ability to intensely focus
- Honesty
- Creativity
- Good memory
- Sense of justice
Co-occurring health conditions and treatments
- The percentage of respondents reporting co-occurring health conditions, particularly mental and emotional health conditions, was very high.
- About 75% of those in the self-reporting group reported anxiety or depression. There were also physical conditions reported, including challenges with sleep, allergies, and intestinal issues.
Priorities for future research
Respondents were also asked to rank their priorities for future research. Some highest priorities included:
- Understanding and acceptance of autism by the general population
- How to improve the life skills of people with autism
- Mental and emotional health in people with autism
What did the authors conclude/discuss?
The authors made it clear that funding and future research in this area need to focus on vocational engagement, understanding of the condition by the larger population, and mental and emotional health. These weren’t just the areas the authors felt were most important—these were also the self-reported priorities of autistic adults.
The authors also stressed that people on the spectrum (and their families) need to be part of the decision-making process, when it comes to research funding, moving forward.
Takeaways for OT practitioners
(These are our personal takeaways and were not mentioned specifically in the paper.)
1. This is yet another call to balance our general OT approach with condition-specific considerations—all while listening to the unique individual in front of us.
The priorities listed by the survey participants really align with our OT skill set. After all, we are heavyweights in vocational training, workplace readiness, community education, and holistic interventions. Plus, we are the only members of the rehab team with a unique understanding of mental health conditions.
So, this paper really felt like a call-to-action to use your general OT approach, but also to take into consideration the unique comorbidities, challenges, and strengths of autistic adults. And, above all else, to listen to the patient in front of you.
(I’ll be eager to hear the thoughts and experiences of members who have worked with this population.)
2. Increasing understanding and acceptance starts with examining ourselves.
It really hit home for me that one of the most important goals of this community (like every community!) is simply “understanding and acceptance.” This, I’m sure, is directed at therapists too. We need to continually look at our own attitudes and assumptions. One of my favorite pieces of OT writing is from Kristie Patten, the department chair at NYU OT. I call it her “I was wrong speech.” I encourage you to read it in full, but here’s a great snippet:
“By listening, I realized I was wrong. We do not build our lives on remediated weakness, why are we expecting those we serve to build their lives on remediated weaknesses? We define and study lack of empathy in autistic individuals without even examining our own lack of empathy towards the autistic way of being.”
3. It can feel like “peds people” and “adult people” operate in two different worlds. But, we need to build a bridge in order to best meet the needs of autistic adults.
There is a push within healthcare to increase collaboration between professions, because it simply makes sense that this would lead to better outcomes.
But, this article brings to mind the need to build bridges even within our profession. Sometimes, “peds therapists” and “adult therapists’’ operate so differently that our work almost feels foreign to each other.
We tend to peg people who primarily work with autistic patients as “peds therapists.” But, to truly meet the needs of this population (and all populations), we all need to be paying attention to practice advances outside just the populations we tend to treat. We need to move toward a place in our profession where a therapist working in an inpatient setting is just as equipped to meet the unique needs of someone on the spectrum as would a school therapist.
Here’s the full APA citation for this article:
Gotham, K., Marvin, A. R., Taylor, J. L., Warren, Z., Anderson, C. M., Law, P. A., . . . Lipkin, P. H. (2015). Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. Autism, 19(7), 794-804. doi:10.1177/1362361315583818
Earn one hour of continuing education by listening to the podcast on this article!!
In this podcast episode, we dive even deeper into this topic, with autism expert (and Club member!), Meg Proctor. You may be eligible for continuing education credit for listening to this podcast. Please read our course page for more details!
So glad you enjoyed the free training!
in all the boxes and the final comment said : Fully Sucessful 