High Functioning Autism and Special Interests

In this episode we explore the often times very intense personal interests of people with high functioning autism.

Are they damaging or should I actually encourage my child to pursue them?

We explore this question by reviewing a research article about special interests and autistic adults.  The article explores the practical and emotional side of interests that of autistic people's interests, what they are, how they affect the lives on those involved, and what are the emotional benefits and drawbacks.

We use the subjects of the studies own words to describe why they do what they do and the importance of their interests in their lives.

This podcast is based on the research of the team in this link: https://journals.sagepub.com/doi/10.3233/JVR-221218

Thanks to  soundimage.org for the free access to the AI generated music used in this podcast (https://soundimage.org/) 

Transcript

Today I’d like to summarize an article addressing autism and those special interests that so many autistic people develop.  It’s become a stereotype, the idea that autistic people can know and do amazing things that, at times, defy logic.

The stereotype in this case is mainly true, but with a lot of caveats that the study will point out.  As with any stereotype, the reality is often much more complex than the idea of something.

The motivation to look into this area came from a parent, as they often do.  This parent has a young adult child, several years out of high school who has not been able to find anything they can or want to do.  Despite being brilliant in several cognitive skill areas, their social limitations and stress related behaviors have kept them from finding their place.  I looked up recent research and found an article that explains the issue quite clearly.

The study points out that a small percentage of autistic adults have paying jobs.  The study says 14%. It’s important to clarify that this number is for autistic adults who received special education services in a K-12 program and/or those who access adult public health services for autism.  

The number does not include the very large percentage of people who are employed and may have what I call an autistic personality.  This is someone who may have some characteristics of autism, including the drive and concentration needed to master complex skills, but does not have the social impairments that some of their peers deal with.

Remember that autism is a spectrum of traits.  The World’s richest person, for instance, has self-identified as being on the spectrum.  Or visit an electrical engineering conference, or an art studio…the autistic personality type is like being outgoing, or ADHD like, or have a superior emotional intelligence, it has become sort of an unofficial “type”.

The population of autistic adults we are focusing on are those who very likely had difficulty getting through the K-12 education system.  They were likely in special education or another type of disability program.

There were behavior and social issues from a very early age, including difficulty in pre-school.  As the years went on, there was likely bullying, social rejection, school behavior problems, and the need for a lot of support to keep up.

This population of autistic adults are further along the spectrum and beyond the point of being quirky to having their autism profoundly affect their ability to function in society successfully.

With that proviso, let’s move onto the article which is titled, “Examining the special interest areas of autistic adults with a focus on their employment and mental health outcomes. 

The authors use the acronym ASD in the article which, is Autism Spectrum Disorder.

In the introduction they write, “It is estimated that approximately 75–95% of individuals with ASD have one or more Special Interest Area (SIA) that can develop as early as 1–4 years of age.  Some individuals with ASD may have the same SIA across their entire lifespan, and others will change according to their development and age.  Other studies indicate that about 50% have a second SIA (my note) 

We conducted this study to develop a better understanding of the relation between SIAs and employment and mental health outcomes of adults with ASD.

1. What types of SIAs do adults with ASD report engaging?

2. How frequently do adults with ASD engage with their SIA?

3. How commonly do adults with ASD work in jobs or careers related to their SIA?

4. How do adults with ASD perceive their SIA and SIAs broadly?

5. What is the relation between SIA-related employment, related supports, bullying, and related encouragement and depression, anxiety, stress, and well-being for adults with ASD?

 Next, they discuss what those interests are:

 In what types of SIAs do adults with ASD report engaging?

The largest category was creative arts (i.e., interests in movies, television shows, art, painting) followed by animals and factual information. In addition, respondents described a variety of SIAs such as penguins, puzzles, crochet, writing poetry, Japanese history, maps, dolls, mathematical concepts, professional baseball teams, and many others.

This is me.  I don’t see gaming on the list. Maybe it’s embedded in the arts category?  Anecdotally, a large percentage of parents of students with high functioning autism that I work with report gaming as an SIA, I would certainly expect it to show on this type of list. 

To get back to the study, a few examples of what participants wrote:

(I’m) Interested in comparative religions and philosophy with particular focus on Buddhism and Eastern Philosophies. I seek training in the meditation practices of these religions.

 Another

(I Create) music using instruments and phone apps. Finding new apps to remix and create music. My primary special interest has always been movies for as long as I can remember. It’s not limited solely to actively watching them or knowing information. I also want to make them, practice the craft, and constantly come up with ideas. I also write poetry, specifically Shakespearean sonnets.

And a third person

I read dictionaries, lexicons and encyclopedias for fun. It’s mostly about the political system in the country. And I like to consume a lot of national and world news.

Participants reported spending significant amounts of time on their interests.

SIAs are often incorporated into the special education programming for students with ASD during early childhood and K-12. For example, SIAs can be used as a type of reinforcement or embedded throughout the school day to teach a variety of skills or increase engagement in tasks. 

However, some educational professionals may view SIAs as obscure or useless and, therefore, implement interventions to limit a student’s engagement with their peers. In addition, children with ASD are vulnerable to bullying and an intense SIA can potentially exacerbate that vulnerability.

(and remember) youth with ASD commonly experience challenges during the transition to adulthood, such as long periods of underemployment or unemployment as well as high prevalence for co-occurring mental health conditions. 

Accordingly, the SIAs of students with ASD should be considered an important component of high-quality transition planning to enhance adult outcomes.

Employment and mental health

Jobs may be advantageous. However, simply linking SIAs to jobs will not likely lead to satisfactory employment outcomes given the complexity of this issue. 

An “autism advantage” at work has been proposed in which SIAs are utilized to the betterment of a business, company, or organization.  However, a recent systematic review found no strong evidence for a so-called autism advantage and proposed that SIAs can be both barriers and strengths in workplace environments.  

Many adults with ASD experience co-occurring mental health conditions in addition to unemployment and community disengagement. Anxiety and depression are particularly prominent.

Results

Around half of the respondents reported they have not obtained employment related to their SIA at any point in their life, with only 25% having current employment related to their SIA. For those who reported no SIA associated employment, 65% stated they would like employment related to their SIA.

The authors asked the participants, “What would you like to tell other people about your SIA?” and “What would you like to tell other people about SIAs in general?”.

One participant wrote, “Our special interests don’t have to be impressive to be worthwhile, and as specific and strong you might think they are, to us they are absolutely everything. I think special interests are necessary for engagement and mental health.”

Many adults also reported their specialized knowledge in the SIA and how it can contribute to society. For instance, one adult wrote the following: “Special interests are the key to helping autistics understand the world-at-large, and vice versa. Embracing our special interests (without endorsing unhealthy excessive obsessions) won’t only help us get by; it will improve the world as a whole to have our passion accepted and utilized within society”.

Similarly, another adult wrote: “I don’t consider them obsessions, special interests are the fuel to living. It may look like a drug at times but it’s way healthier than those. Everyone has their special interest, their passion, their area of expertise. In neurotypical contexts, it’s seen more positively likely because of economic incentives and/or mainstream social acceptance. With autistics, it seems more intense, exhaustive, and not as useful... but it should still be encouraged and guided towards building a happy and successful life, whatever the interest is. Special interests are the spark that makes life worth living.

Shame and masking of SIAs

Survey respondents were keenly aware of limiting conversation focused on their SIA with uninterested people. Some adults reported “masking” or hiding their SIA. For example, one adult wrote, “I don’t want to talk about my special interests with people who aren’t already interested in it. I prefer to keep it to myself . . . have always been ashamed of anything that made me too different.” Another adult wrote, “It hurts me when people make fun of or don’t want to listen/read about my special interests.”

Respondents reported that other people listening about their SIAs is important. For example, one adult wrote, “Just listening to someone talk about their interest and taking the time to listen and learn about it with them is huge to someone on the spectrum”.

Similarly, adults reported a desire for encouragement and acceptance of their SIAs. One adult wrote, Let us have our fun.  Like why does it have to be wrong or weird to like something too much?

Lastly, another adult wrote, Please don’t make us feel bad about our special interests. They mean a lot to us. I should be allowed to feel free to discuss my special interests (within reason obviously) without feeling like I have to hide it from others or spend so much mental energy suppressing what I have to say about it. 

 SIA related employment 

Job matching is a widely used strategy in the fields of secondary special education and vocational rehabilitation.  A study found young adults with developmental disabilities were more productive and accurate when completing high-preference jobs compared to low-preference jobs.

Respondents felt strongly that SIAs can be a means in which autistic individuals contribute to broader society and that SIAs are closely related to their identity. For example, one survey respondent wrote, “I would like to say that they aren’t the same as a regular interest. They aren’t just lifelong hobbies for me. They are a core part of my identity.”

RESULTS

Open-ended responses indicated adults with ASD have highly diverse SIAs that are rarely utilized in their employment experiences. (research methodology) revealed SIA-related bullying was associated with higher levels of depression, anxiety, and stress. SIA employment was associated with depression such that those who were not currently employed in their SIA reported higher levels of depression. Respondents without support from people in their life related to their SIA reported higher levels of stress.

CONCLUSION

SIAs are extremely important in the lives of autistic adults and should be utilized to enhance their employment experiences and overall well-being. Family members, adult service providers, and educational professionals should support and encourage SIAs.

And me again, a last time.  In thinking how to address a child’s SIA, I believe that the talents these kids have need to be encouraged.  Just because it may seem that it is unpractical, they often lead to something that is practical.

I have seen and continue to see adolescent autistic teens suffer needlessly from the often-misdirected effort of schools to change who these kids are, and it very rarely works.

The pain that is caused by trying to fit the square hole of an autistic youth into the round traditional school to adult transition system simply does not work for the vast majority of these students, it’s time to talk about how they can best interact with the world, not how we or educators think is best.