What APS and Caregivers Need to Know about Autism

By Don Mesibov, Founder/Director Institute for Learning Centered Education Autism Initiative 
 

June 2026

There are experts in the field of autism who conduct research, offer therapy, and provide other vital services. But you don’t have to be an expert or need to learn a lot about autism to understand ways to effectively interact with someone on the autism spectrum (see 20 Tips, below). You just need to be caring and learn a little bit about characteristics of some people on the spectrum that are different from what we might expect.

The Problem

Organizations are doing outstanding work researching autism and providing direct services to people on the autism spectrum and their families. Our Institute for Learning Centered Education Autism Initiative is one of the few organizations addressing a problem that has consequences for the increasing number of people diagnosed with autism as well as the millions of people who interact with them daily.

The problem is that there are people in every walk of life who interact regularly with people on the spectrum yet often have little information to guide them. The consequences of this lack of awareness among the public is that it:

• Creates misunderstandings about the behaviors of people on the spectrum, which causes stress and trauma for people with autism
• Places an unnecessary burden on caregivers who are already overwhelmed with the unique challenges that confront parents and other caregivers
• Impacts the many people in schools, community organizations, and first responders affected by behaviors of people with autism, which can disrupt an entire activity, community event, or crisis situation

For example, during a routine traffic stop, a police officer stopped 32-year-old Deborah and, looking at her license, said, “I see you are 32. When will you be 33?” Deborah responded, with complete sincerity, “On my next birthday.” The officer who told this story admitted, “I figured she was being sarcastic and I treated her accordingly.”

What the officer didn’t understand is that many people on the spectrum interpret words extremely literally to the degree that the figurative expression, “He has eyes on the back of his head,” might encourage them to check if this is true.

Additional Examples

Serious consequences have resulted from police encountering a person on the spectrum carrying a knife or firearm. The police, in such situations, are understandably concerned for their own safety, while the person with autism has no conception of how they are being perceived. While misunderstandings not involving first responders may not have life-or-death consequences, they can still meaningfully affect the caregiver and person in their care.

Deborah’s story is not unique. Every day, otherwise competent and well-intended adults who don’t understand the unique characteristics of many people on the autism spectrum are creating stress and other consequences for people on the spectrum, themselves, and others.

Another story involves 27-year-old Peter, who has been learning to self-advocate. On the first day of class, Peter took a seat in the far rear of the classroom. The teacher moved Peter toward the front. The next day Peter sat in the far rear of the classroom again. Once again the teacher moved him toward the front. Three more days like this and the teacher sent Peter to see the administrator. Since Peter looked and spoke like any other adult, the teacher assumed Peter was intentionally behaving inappropriately by ignoring her instructions to sit closer to the front of the room.

While the administrator was talking to Peter he noticed Peter looking in another direction, took it as a sign of disrespect, and told Peter to drop the course. To this day, Peter has no idea why he was removed from the class. In similar situations, there are often consequences beyond what the person on the spectrum may experience, including parental complaints, hearings, publicity, and other time-consuming ramifications for all adults involved, in addition to the damage done to the development of the person with autism. Peter’s counselor at his residential home says his efforts to help Peter learn to self-advocate were set back significantly.

It should be emphasized that both the teacher and administrator in Peter’s story, and the police officer who thought Deborah was being sarcastic, are otherwise caring and competent individuals. What the teacher didn’t realize is that a barely noticeable sound to most people can be deafening to a person with autism. When the teacher was informed of this, she immediately said, “I feel terrible. I realize the problem is not Peter’s, it’s mine.” The administrator didn’t know that some people on the spectrum need to look away from the speaker to focus on understanding what is being said. The police officer speaking with Deborah was unaware that many people with autism interpret words extremely literally.

Whether the person who is misunderstood is a child or adult, the consequences reverberate through adult caregivers, other adults affected by the behaviors of someone on the spectrum, and, sometimes, an entire organization. Recently, in a small community in northern New York, a police officer tasered an 11-year-old boy who had run away. The officer was unaware that 1) the child was not understanding simple commands and 2) was unnerved by the flashing lights and sirens of the police car. We show a video at our workshops which demonstrates how a police officer should approach a runaway. Having not seen this video, the officer’s total mishandling of the situation leaves him with his career threatened and his entire police department the subject of public accusations by the child’s parents.

Tips for Understanding People on the Spectrum

The professionals and parents of children on the spectrum in our Institute for Learning Centered Education Autism Initiative have created a list of 20 Tips reflecting some of the more common characteristics of people with autism. In addition to hyper-sensitivity to sound and the need to look away from the speaker, these include:

• Fear of physical contact
• Interpreting words extremely literally
• Thriving on routine
• Easily upset if a routine is changed, particularly if not prepared for the change

What makes understanding autism more challenging than many other conditions is that there is no behavior that is characteristic of every person with autism. This inspires the saying, “To know one person with autism is to know one person with autism.” For example, while many people on the spectrum lack appropriate social skills, some can be skilled socially. Some like to be hugged, while others may be petrified of physical contact.

This Is a Challenge We Can Do Something About

The misunderstandings that cause trauma for people on the spectrum and consequences for those with whom they interact can be addressed with information.

Can You Do One of These Four Things?

Our institute includes professionals in the field of autism, parents and grandparents of people with autism, people with autism, and other altruistic individuals. We are an all-volunteer organization, none of us receives financial remuneration for our work, and we do not charge for our services because we want to reach as many people as possible.

Here are four things you can do to help us and people with autism:

• Organize 10 or more people to participate in our two-hour autism awareness session and send us contact information.
• Put us in touch with someone at the state level who can help advertise our two-hour session, which changes perceptions of autism and how people interact with those on the spectrum.
• Study our website until you have improved your understanding of autism.
• Simply sign up for our mailing list to receive information by sending your name and email address.

The institute offers a two-hour highly interactive workshop which focuses on tips and strategies for understanding people with autism, and we can work anywhere in the country. To schedule our no-cost workshop, contact us or check out our website.

Why do our volunteers do so much more than anyone would ask of them?

We do it because we can; we do it because it’s right! 

 

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This publication was created by the Adult Protective Services Technical Assistance Resource Center (APS TARC) administered by the WRMA, Inc. under Contract No. 140D0424F1178 from the U.S. Department of Health and Human Services, Administration for Community Living, Administration on Aging. The views expressed in this publication do not necessarily reflect the views or policies of the Administration for Community Living or the U.S. Department of Health and Human Services.