Back to the Basics

Dania Jekel, Executive Director
Blog Post

July 2020

At this time when health, safety, and justice are occupying our minds and effecting our lives in drastic ways, it is easy to forget some of the basic, underlying understandings of the Asperger/autism profile. I have addressed many of these aspects in greater detail in previous talks, and they are covered from multiple perspectives in articles and webinars, which can be found on the AANE website. I am the first to say that each person on the spectrum is unique, but these precepts are based on my own understanding after more than 30 years living and working with those on the spectrum. I think it is worth taking a look at some fundamental ideas to remember, especially as we find our way through these difficult times.

  • Children and adults are often socially and emotionally many years behind their chronological age. Parents and adults should act and respond with this knowledge in mind. Comparing children or adults on the spectrum to their peers creates unrealistic expectations and low self-esteem.
  • Ages 4-6 and 20-30 can be the hardest years of life for someone on the autism spectrum. Emotional regulation, processing, and communication skills are less developed in the younger ages and the resulting behavior requires an approach that understands this. Young adulthood brings a new cascade of responsibility and life decisions, often without the structure of high school, which those on the spectrum may not be socially/emotionally prepared to make.
  • Understanding yourself (or understanding your child if you are a parent)– especially interests, strengths, and challenges–will make life easier in many, many, ways. Recognizing and mitigating areas of difficulty and discovering ways to use strengths and interests throughout life opens up opportunities, connections, and a way of constructing a fulfilling life.
  • Receiving positive reinforcement, experiencing success, and finding those who are kind & accepting is key to counteracting negative experiences. Shame, exclusion, and bullying are almost universally felt by those on the spectrum at some point in their lifetime. These damaging experiences can have lasting effects, and these painful memories are best tempered with positive encounters.
  • Reducing anxiety is paramount. Being anxious diminishes the ability to think and make good decisions. It can be hard for someone on the spectrum who uses their cognition to navigate the world when their thought processes are limited by crippling anxiety.
  • People with Asperger/autism profiles are social beings like everyone else. Sometimes social interactions may need to be with fewer people, may be more tiring, or negative experiences can cause someone on the spectrum to withdraw from others. But some level of social engagement and interaction and being part of a community, whether in person or online is vital to mental health.
  • People don’t grow out of autism, but they do mature and often learn to find and be comfortable with a life that suits them. Time after time I have witnessed individuals on the spectrum who once struggled to find a place in the world construct a satisfying life and find community. Later adulthood allows many to release the burden of societal, family, and self-imposed expectations, allowing them to embrace an unconventional life that finally fits.
  • Challenges and difficulties–as well as talents–may be hidden. People’s anxiety and struggles aren’t necessarily reflected by what someone looks like or how they act. And, on the other side, abilities and strengths can often be equally hidden.

So why am I going over these points, which may, for some, be something they already know? We have been experiencing a time like no other, where current events have dramatically affected or completely eclipsed other areas of our lives. While the ideas I’ve outlined would be important to know at any time, it is especially critical to remember these things as part of the lens through which we view living on the autism spectrum now.

As parents of children on the spectrum of any age or as adults with Asperger/autism profiles, it may be easy to lose sight of this understanding. It may cause unrealistic expectations of behavior with disrupted routines and increased isolation over the last several months. It may cause increased anxiety when thinking about the future in a climate of high unemployment, restricted movement, and social unrest. It may be easy to make assumptions about how someone is handling this change, which doesn’t acknowledge some of the key aspects we know about a person’s unique profile.

But these points also include an important reminder of the ways in which understanding the Asperger/autism profile may point to ways to better manage in this time as well. Harnessing interests and strengths to reduce anxiety and effect change, finding community to combat loneliness and isolation, and forging self-awareness to construct a life that fits–even if it is on a different time-table–can be a vital way to not only survive a world of uncertainty, but to flourish.