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Living with Autism

by ​Dr. Pam Beharry

There is an old expression that you should “walk a mile in my shoes.” It encourages us to consider things from someone else’s perspective. I have read some exciting literature that gives us that very opportunity as we try to understand individuals with Autism.

The effects of autism (now more accurately referred to as Autism Spectrum Disorder, or ASD) on individuals can range from extremely severe and handicapping to a milder yet potentially impairing level.

In this blog post, I share excerpts from literature written by adolescents and adults who fall at the “higher functioning” end of the spectrum; those who generally have invisible disabilities that become evident through awkward social interactions, miscommunications, or repeated challenges in solving common daily problems. Their writings about their lives and experiences reach out to us “neurotypical” people and help us better understand their challenges and triumphs.

One of the main insights I took from this literature is that while a person with ASD may not always understand what is typical or what is expected of them in any given situation, they often feel judged and misunderstood. This is well explained in these excerpts of personal essays written by Anne Carpenter(Autistic adulthood: A challenging journey), Jim Sinclair (Bridging the gaps: An inside-out view of autism), and Kathy Lissner (Insider’s point of view):

  • I did not know how to relate comfortably to other people. I did not know when to say something or when not to say something, and I often said and did embarrassing things.
  • After being let go from my first job,] I interrupted the supervisor several times because I did not know what to do next, conversed with other staff members at the wrong times, and became upset very easily. [For even a high functioning autistic adult,] life is a game in which rules are constantly changing.
  • Producing any behavior in response to any perception requires monitoring and coordinating all the inputs and outputs at once, and doing it fast enough to keep up with all the changing inputs that may require changing outputs. [I experience] gaps in what is assumed to be already understood. Even when I can point to the gap and ask for information about what goes there, my questions are usually ignored, treated as jokes, or met with incredulity, suspicion, or hostility.
  • Not all the gaps are caused by my failure to share other people’s unthinking assumptions. Other people’s failure to question their assumptions creates at least as many barriers to understanding … expectations that I understand what is expected of me, that I know how to do it, and that I fail to perform as expected out of deliberate spite or unconscious hostility.
  • Assumptions [about social relationships] are similar: that I have the same needs for relationships that other people have, that I know how to relate in ways that are considered normal, and that I don’t relate normally because I have negative or uncaring attitudes towards other people … [the reality is] that social interactions involve things that most people know without having to learn them.
  • Actually, there are some pretty serious deficits, but not in my ability to care: there are deficits in my ability to recognize people who aren’t able to care, who aren’t authentic, who don’t value me as myself.

These comments invite us to stop and listen when we are with people with ASD, and appreciate that a lifetime of feeling out-of-sync with others can be painful, discouraging, and can result in becoming isolated from the social world.

A few tips I can offer when a comment or a behavior is not clear or seems off-base, are to reflect on your interpretations, be kind and respectful, and ask questions to clarify. Explain your own words or actions and where you are coming from. Work from the assumption that the person with ASD is doing his or her best, or in the words of Jim Sinclair “Work with me to build more bridges between us.”

You may also be interested in Emergence, Labeled Autistic (1996), a ground-breaking book written by Temple Grandin, one of the most famous writers with ASD. Another favorite of mine is written by a 13-year-old boy with ASD (Luke Jackson: Freaks, Geeks, and Asperger Syndrome (2002)).

Unfortunately, I find resources for teens and adults with ASD are sadly lacking. However, according to Chuck Myke, Lutherwood’s Resource Coordinator for Autism Services, there is growing recognition of this lack. April is Autism Awareness month and the focus of Autism Services of Waterloo Region’s (ASWR) recent campaign is to move to a deeper understanding of autism, while promoting inclusion and belonging. Thank you for reading this blog and taking a good first step to gaining that deeper understanding.