Between 65% and 95% of autistics have special interests. The majority of those interests both in children and adults involve verbal learning and memorization of facts. Some of the research into special interests has been focused on how it is related to the sense of well-being, quality of life and adaptive functioning.
Personal accounts and smaller qualitative studies that give voice to the autistic children and adults themselves report that they have a positive role in their lives. Yet some researchers have found that special interests interfere with learning, social activities and behavioral flexibility in children and adults. For example, a person engaged in a special interest can be hard to be interrupted in order to talk to family or participate in an activity with family of friends. Or maybe the person is so focused on the special interest that it absorbs the time and attention that needs to be given to homework. In the studies reporting negative outcomes, the impact of social interests was evaluated from the perspective of experts and parents, rather than autistic individuals themselves.
These contradictory findings might mean that when a special interest becomes very intense, those close to the autistic person experience it as getting in a way of the relationship they would like to have with him or her, and how they would like his or her life to be. It might also mean that a special interest can be a source of great enjoyment to the person engaged in it while also being a source of tension between an autistic individual and his or her family. An additional aside here is that when studying this topic, the researchers should be very explicit about whose report is being solicited, the autistic person's or his or her family's or caregivers'. It is an important distinction that should affect the interpretation of the responses.
This guess is supported by the findings that the majority of autistic adults report spending between 0 to 4 hours on their special interest every day, but some individuals spend up to 8 hours a day focused on their special interest. Those who spent more time focused on their special interest also reported feeling worse about themselves, their lives, and their overall happiness. In other words, they experienced a sense of lesser well-being. The more hours a person spent on the special interest, the less their sense of well-being. There are two ways that this could be explained. First, more time spent on special interest might get in a way of other opportunities to increase the sense of well-being. Second, the autistic persons who were not feeling good about their lives might have used their special interest(s) as a coping strategy.
In one of the studies I have reviewed, there was a discussion that strongly resonated with me on how to define the quality of life of autistic adults. The researchers spoke about going beyond the normative definitions of success, such as independent living, social relationships, and employment and incorporating those factors that matter to autistic persons themselves (Grove et al., 2018). This is a very important point. If we are going to talk about someone's well-being or quality of life, we should an effort to see it from their perspective. We can also explore the experiences and perceptions of the family and community members. We just need to make a clear distinction between what a person thinks about how they are doing in life and what others think about how they are doing. In my readings, I came across a couple of studies that took a strength perspective on the issue and that explicitly incorporated the position of the autistic community. That was very good to see.
Among children, girls tend to have special interests that are more similar to those of their peers. For that reason, girls' special interests often do not stand out as much, even though they might be very intense. Girls, for example, might be interested in princesses, unicorns, animals, movies, and books. Boys might be intensely interested in train schedules, washers or dryers, maps, train schedules, and drain covers. These types of topics, and the boys interested in them, tend to stand out more while girls tend to blend in.
Among adults, more men than women have special interests. Those interests play similar roles in their lives regardless of gender. The majority of autistic adults have more than one special interest and do not have a rigid focus on a specific one. Special interests can also change over time, be discontinued and even come back after a while. In social media, autistic individuals describe a sense of great pleasure when they go back to an old special interest that they have not engaged in for a while for some reason. This shows that there can be a lot of flexibility and fluidity around someone's special interests.
Participation in special interests is both internally and externally motivated. This means that some of the motivation comes from inside of the person, and some from some external consequence that is a result of the engagement in the special interest. Intrinsic motivation is more common. This type of motivation has been found to be related to increased feelings of autonomy and competence, which could be an intrinsic reward someone gets out of being engaged in their special interest(s). This is just one of the many functions that the special interest(s) can serve. Here are some others.
The functions of special interests:
- Self-regulation strategy
- Coping strategy, for example, for anxiety
- Deeply satisfying and enjoyable, a source of positive emotions
- Source of positive self-image, expertise, self-confidence, control
- Finding social connections via common interests, finding "your people"
- Can be a gateway to a vocational choice
- Can be a way to accomplish goals
- Increased sense of well-being
- Increased life satisfaction in the areas of connectedness and leisure
- Interest and knowledge
- Engagement and flow
- Prestige (status in one’s one social circle) and achievement
Some interesting research from the MIT Media Lab involved autistic children whose special interests were used for on-the-spot customization of computer games. When a child started a game, their special interest-related imagery replaced the generic game visuals. Researchers suggested that an embedded interest can enhance attention and motivation. The researchers also suggested that a special interest customization feature could be used in educational software to reward successful actions. It is a clever study, and it is also encouraging to see the technology researchers taking a strength-based perspective on special interests and autism in general.
Indeed, there are many reports of interventions using special interests to teach engagement with games, self-regulation strategies, play with peers, skills of daily living, counting, organizational skills, etc. A DIR/Floortime therapy model uses following the child in their activities and interests as a way to join the child world and expand it. This model does not explicitly use special interests, but a therapist would capitalize on it if the child were engaged in a special interest during therapy session. The general idea of all these approaches is to join a child in a topic or activity that already has captured his or her attention and where the child's strengths shine, rather than strive to re-direct a child's activity to comply with an adult-determined demand. Many studies involving both children and adults report improved functioning in the areas of social behavior, joint attention, speech, non-verbal communication, fine motor, regulation, sensory processing, enthusiasm and motivation while engaged in a special interest or while talking about the special interest.
Based on these findings and on the perspective of the autistic community, such descriptors of special interests as “restricted”, “circumscribed”, “perseverative” and “obsessions” should not be used. They need to be replaced with ones that reflect their varied role in the lives of autistic individuals.
Whatever their specific function, special interests are important, have a positive impact on an individual, and should be supported and possibly used to promote learning, social connections and better quality of life. At the same time, balancing the special interests with other activities that contribute to one’s own sense of well-being is something that needs to be learned and supported as well. It is therefore important to help autistic individuals develop self-regulation, coping, adaptive, social and other skills that would allow them to have more choices in life that could be made and pursued comfortably. It is also important to create opportunities in all communities for the neurodivergent individuals to participate in community social, recreational, volunteer and educational activities. Parents, caregivers and professionals who work with autistic individuals need to be educated on the many positive functions the special interests have in an autistic person’s life.
References and Sources:
Autism Self-Advocacy Network: https://autisticadvocacy.org/about-asan/about-autism/
Attwood, T. (2003). Understanding and managing circumscribed interests. In M. Prior (Ed.), Learning and behavior problems in Asperger Syndrome (pp 126-147). New York: Guilford Press.
Boyd, B. A., Conroy, M. A., Mancil, G. R., Nakao, T., & Alter, P. J. (2007). Effects of circum-scribed interests in the social behaviors of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37, 1550–1561
Grove, R., Roth, I. & Hoekstra, R.A. (2016) The motivation for special interests in
individuals with autism and controls: Development and validation of the
special interest motivation scale. Autism Research, 9, 677-688.
Rachel Grove, Rosa A Hoekstra, Marlies Wierda, Sander Begeer. Special interests and subjective wellbeing in autistic adults. Autism research, Volume11, Issue5, May 2018.
Kaboski, J. R., Diehl, J. J., Beriont, J., Crowell, C. R., Villano, M., Wier, K., & Tang, K. (2014). Brief report: A pilot summer robotics camp to reduce social anxiety and improve social/ vocational skills in adolescents with ASD. Journal of Autism and Developmental Disorders, 45, 3862–3869.
Klin, A., Danovitch, J.H., Merz, A.B. & Volkmar, F.R. (2007) Circumscribed interests
in higher functioning individuals with autism spectrum disorders: An
exploratory study. Research and Practice for Persons with Severe Disabilities,
Koegel, L. K., Vernon, T. W., Koegel, R. L., Koegel, B. L., & Paullin, A. W. (2012). Improving social engagement and initiations between children with autism spectrum disorder and their peers in inclusive settings. Journal of Positive Behavior Interventions, 14(4), 220–227.
Kryzak, L. A., & Jones, E. A. (2015). The effect of prompts within embedded circumscribed interests to teach initiating joint attention in children with autism spectrum disorders. Journal of Developmental and Physical Disabilities, 27(3), 265–284.
Turner-Brown, L.M., Lam, K.S.L., Holtzclaw, T.N., Dichter, G.S. & Bodfish, J.W. (2011) Phenomenology and measurement of circumscribed interests in autism
spectrum disorders. Autism, 15, 437-456.
Mercier, C., Mottron, L. & Belleville, S. (2000) A psychosocial study on restricted interests in high-functioning persons with pervasive developmental disorders. Autism, 4, 406-425.
Teti, M., Cheak-Zamora, N., Lolli, B. & Maurer-Batjer, A. (2016) Reframing autism:
Young adults with autism share their strengths through photo-stories. Journal
of Pediatric Nursing, 31, 619-629
Patten Koenig, K. & Hough Williams, L. (2017) Characterization and Utilization of
Preferred Interests: A Survey of Adults on the Autism Spectrum. Occupational
Therapy in Mental Health
Vacca, J. J. (2007). Incorporating interests and structure to improve participation of a child with autism in a standardized assessment: A case study analysis. Focus on Autism and Other Developmental Disabilities, 22(1), 51–59.
Vismara, L. A., & Lyons, G. L. (2007). Using perseverative interests to elicit joint attention behaviors in young children with autism: Theoretical and clinical implications for under-standing motivation. The Journal of Positive Behavior Interventions, 9(4), 214–228.
Winter-Messiers, M. A. (2007). From tarantulas to toilet brushes: Understanding the special interest areas of children and youth with Asperger syndrome. Remedial and Special Education, 28(3), 140–152.
Winter-Messiers, M. A., Herr, C. M., Wood, C. E., Brooks, A. P., Gates, M. A., Houston, T. L., & Tingstad, K. I. (2007). How far can Brian ride the daylight 4449 express? A strength-based model of Asperger syndrome based on special interest areas. Focus on Autism and Other Developmental Disabilities, 22, 67–79.
Power Cards: Using Special Interests to Motivate Children and Youth with Asperger Syndrome and Autism. Elisa Cagnon, (2002). APC.
Morris, Robert R., Connor R. Kirschbaum, and Rosalind W. Picard.“Broadening Accessibility Through Special Interests.” Proceedingsof the 12th International ACM SIGACCESS Conference on Computersand Accessibility - ASSETS ’10. Orlando, Florida, USA, 2010. 171.Copyright c2010 ACM