I’m a big believer in the idea of an autistic community.  We live in a world where autistic people are isolated and marginalized.  Furthermore, we live in a world where typically-developing people’s expectations and preferences regarding social interactions and customs are valued, and where autistic people’s own preferences are generally not valued.  Communities of autistic adults can provide us with unconditional acceptance and the opportunity to be among others who, even if they’re not necessarily similar to us, will at least have had similar experiences as fellow neurodivergent people in neurotypical society.  Even if we’re only in the autistic community for an hour or two a month, and around neurotypicals the rest of the time, it can be an essential respite and a valuable source of social relationships.

However, the communities of autistic adults that we have today have to be deliberately sought out in adulthood – and many autistics do not take steps to join these communities, whether because of internalized stigma surrounding their own diagnoses, the discomfort associated with the unfamiliar, or social anxiety from years of negative experiences in mainstream schools.

The experience of being part of the autistic community is also something that we currently deny to children.  Clare Sainsbury (2009, p. 52) illustrates this in an eloquent passage:

“One particularly painful aspect of mainstreaming is isolation from other children with Asperger’s.  Many people reached adulthood without ever having met anybody like themselves, each believing that they were the ‘only one’…  I think this degree of isolation is very hard for neurotypical people to even imagine.  My non-verbal autistic friend was the only person I had ever met who seemed normal to me and, as I have already described, the idea that there might be more people somewhere in the universe who were like me was the stuff of my most secret childhood longings and fantasies.  This pervasive isolation makes it extremely difficult for children with Asperger’s to develop a positive identity and sense of themselves as disabled people.”

Now, I admit that things may have changed since Sainsbury’s childhood.  Today, many of us can at least expect to be part of social skills groups with other autistic children.  However, this still denies autistic children the opportunity to meet autistic adults, some of whom might be positive role models with insights that come from years of experience.  Some autistic children in schools suggest that they would appreciate a chance to speak to autistic adults, but this opportunity is not currently provided (Jarret, 2014, p. 230).

Autistic children may also receive little information about autism.  Certainly, qualitative reports from autistic children suggest that schools don’t provide them with much information (Jarret, 2014, pp. 39, 216).  While research has begun to explore Internet-delivered educational programs for older autistic children (Backman et al., 2018), we could do more to expand the availability of such programs.  They could include both content from autistic adults and content developed by experts in the research community.  The programs could also expand the scope of their content, offering not just information to help people in their day-to-day lives and to help them plan for the future, or just information on the science of autism, but also information about the history of autistic people as a distinct community in society.  At the very least, it could include information to encourage autistic children to consider joining the autistic community when they enter adulthood.

Education of this sort could even help autistic children develop a positive identity as autistic people.  So many autistic children today struggle with mental health, and the ability to take pride in one’s identity is crucial to maintaining positive mental health.

There’s also practical benefits to learning more about autism.  When I was in my teen years, I attended a bunch of autism workshops and learned some valuable information about myself that helped me transition to adulthood.  I’m always a bit disappointed when I go to a transition workshop and see an audience of parents of 14-, 15-, and 16-year-olds but no actual 14-, 15-, and 16-year olds.

Specialized schools for autistic and neurodivergent people are particularly well-suited to do much more to give their students autism information and to introduce them to the autistic community.  Rather than just providing Internet-delivered lessons about autism, or whatever autism information could be gleaned from social thinking lessons, specialized schools could seamlessly integrate information about the science of autism and neurodivergence in science classes, while social studies classes could be used to discuss the history and politics of the autistic community, and so forth.  Autistic and neurodivergent adults could be recruited for school visits.

Right now, autistic children don’t have much involvement in the community of autistic people.  I suppose it’s not surprising, given that most autistic children have neurotypical parents – just think about deaf children of hearing parents.  But it’s not inevitable that things should be this way. Perhaps if we can bridge the gulf between autistic adults and other communities in the autism world, we might be able to better integrate autistic kids into the autistic community.

 

What do you think?  Comment below!

References

Backman, A., Mellblom, A., Norman-Claesson, E., Keith-Bodros, G., Frostvittra, M., Bölte, S., & Hirvikoski, T. (2018). Internet-delivered psychoeducation for older adolescents and young adults with autism spectrum disorder (SCOPE): An open feasibility study. Research in Autism Spectrum Disorders, 54, 51–64. https://doi.org/10.1016/j.rasd.2018.07.001

Jarret, H. (2014). An exploration of identity formation in autistic adolescents, its relationship with psychological wellbeing, and the role of mainstream education provision in the identity formation process (Doctoral dissertation). Retrieved from https://ore.exeter.ac.uk/repository/handle/10871/15770

Sainsbury, C. (2009). Martian in the playground: Understanding the schoolchild with Asperger’s syndrome (Rev. ed.). Thousand Oaks, CA: SAGE.