What is Autism Acceptance in 2021?

World Autism Awareness Day is April 2, 2021. This year, we must awaken ourselves to a new dawn. That dawn must expand Autism awareness well beyond knowing that there are individuals in the world with Autism Spectrum Disorder. This is part of the reason why groups like the Autism Society have changed their message from “Autism Awareness Month” to “Autism Acceptance Month.” Our own awareness must take into account the events over the past year in order to move towards understanding acceptance. The COVID pandemic has been more than just a global health issue as it has taken the very foundations we helped build for those with Autism and shattered them to degrees we might never fully understand.


Let’s begin by discussing the idea of routine. We hear the word routine and so many thoughts come to mind. It might be getting up, getting dressed and ready for work, jumping in the car, stopping at the local coffee shop, and going to our place of employment. For students, it might be rolling out of bed, brushing teeth and getting dressed, then running off to the bus stop to head to school. For most neuro-typical individuals, if something were to occur that throws off that routine (drive-thru line excessively long or bus comes early), it could be handled with a shift of what needs to happen and with a little frustration with these minor inconveniences.


Ask any BCBA and they will explain that the idea of routine is extremely important in developing behavioral patterns within individuals on the Autism Spectrum, as those routines bring about a sense of security and comfort. Individuals begin to count on those routines in much the same way that a neurotypical individual might count on an alarm clock to wake up at a certain time. However, remove that routine, and individuals on the Autism Spectrum may begin to escalate and may not be able to function throughout the rest of the day in the same way they are accustomed to operate. They may also obsess over what was not able to be completed and lose focus the rest of the day. Often the outside world does not understand that it is not as easy as simply saying “get over it” to move past that sudden lack of a routine.


That change in routine happened as soon as things shut down in parts of the world. Here in the US, we saw that shutdown happen in different ways at different capacities. Those on the Autism Spectrum may have lost the foundation for approaching each day that they worked so hard to achieve. It was horrible to see the loss of jobs and difficulty for many to make ends meet during this time. For some on the Autism Spectrum, this horror was compounded by trying to navigate a world which they did not, and could not, fully understand.


We move from the idea of routine to the ability to use sensory feedback as a way of processing events in the world. Those of you who have heard me speak, know that I am big on the fact that we all have ways of using sensory feedback in our lives. Sensory feedback is used in a variety of ways to help us stay calm and focused. For some of us, it might be holding a pen while speaking or thinking, moving around a room or office while addressing an issue, or grabbing that hot cup of coffee as the day starts to trigger the idea of “start of the day” in ourselves. As neurotypical individuals, we have learned socially appropriate sensory behaviors which benefit us. We have also learned to adjust when those items are not in the usual location or occur at the usual times. That coffee shop coffee might adjust to coffee brewed at home. That pen holding might continue, but with the pens we have lying around the house. That walking may continue when we are on a regular phone call, moving around a living room.


For those on the Autism Spectrum, that sensory feedback might appear in differentiated ways. It might involve holding a weighted stuffed animal when things are difficult, fidgeting with a Tangle Jr. or pencil grip to help focus, or even needing a calming sensory room as a break from the rigors of the day. The first issue encountered was the fact that many of these sensory items were not something that could be found at home. They were items that were normally found in classrooms or workplaces that were used at certain times for certain reasons and as part of a routine. These items might not have been easily brought to a home,  and the items at the home  may not have helped because they were not associated with activities at home. The idea of a calming room also does not carry over to most homes. as there is a lack of space for something like this to be in place. It is not always as easy as saying “just go into your room, close the blinds, and sit quietly.” So while neurotypical individuals adjusted how they used sensory items and what those items were, many of our individuals on the Autism Spectrum were not able to do the same.


The final area we need to address is the fact that every one of us has undergone a level of stress based on the degree of the trauma which the COVID pandemic has caused. As I have spoken with psychologists and counselors throughout the country, the level of PTSD is greater than it  has ever been as a significantly high percentage of us have been affected. What does that mean exactly? First, it means that we are all under high levels of stress and we want the world to go back to the way it was. I am sorry to report that it will never “go back to how it was.” That is a good thing though, too, as we have had to learn to adjust some of our approaches to life in positive ways. There are still individuals who are struggling to get by, but there is hope in so many ways.


For the neurotypical individual, there are certain things which are returning to a level last seen in pre-COVID days. Fitness centers have re-opened, and their hours are returning to previous levels. Thus, stress can be alleviated through multiple types of exercise. Restaurants have re-opened with the ability to dine inside. Thus, we can return to going out to eat and being in a social environment. Gatherings are being permitted with various attendance capacities. So now we can attend events, activities, or even celebrations to re-unite with family and friends.


That sounds wonderful and like it should be the way to end this piece. However, that is not how some of our individuals on the Autism Spectrum are seeing it right now. Some of our students are still struggling to re-create those routines that they  relied on before, or struggling to create new routines which is a process that can be extremely difficult in a hybrid learning environment. Some adults are struggling as their workplace routines may have shifted and they have to learn to adjust to new requirements or even search for new opportunities. The idea of a “return to normalcy” might not be something which would be thought of in any way with these individuals. For the teachers, therapists, and aides who are working with these individuals, the focus might be to present new coping behaviors before they even consider moving into the next levels of instruction.


So as we approach Autism Acceptance Month here in 2021, please know that there is so much more to understand than knowing statistics of those who are on the Autism Spectrum (1 in every 54 individuals.) Instead, please be aware that issues such as a lack or creation of a new routine can cause significant levels of stress, the changing of items for sensory feedback leading to calming and focus can cause significant levels of stress, and the pandemic has caused significant levels of PTSD in ALL of us.  Our awareness needs to be on the fact that we need to listen, communicate and interact with a level of understanding with all individuals. We also need to be aware that our individuals on the Autism Spectrum are bringing so much life, joy, and talent to this world. Too often, the neurotypical community looks at Autism Spectrum Disorder and presumes that individuals cannot function in the real world. Acceptance of individuals on the Autism Spectrum begins with an understanding of who these individuals are. People like Sir Anthony Hopkins (actor), Jim Eisenreich (professional baseball player), Susan Boyle (singer), and Dr. Temple Grandin all have been diagnosed as being on the Autism Spectrum and have done extremely well for themselves. There are also many other well-known and quite accomplished individuals throughout the course of world history who demonstrated characteristics of being on the Autism Spectrum. The events of this past year and the pandemic turned the world upside down. For many on the Autism Spectrum, their world was not only turned upside down, but then continued to spin; like shaking a snow globe and instead of putting it on its base, placing it on its rounded top and spinning it around.


Autism Acceptance Month in 2021 should serve as a reminder that we all need to be patient with each other, listen and support one another no matter what the routine or sensory input need might be, and understand that EVERY individual has so much to contribute to life!


Posted in SH Special Education Today Newsletter