Another April has passed – big sigh of relief! As an autistic I have a love/hate relationship with April – the AUTISM month. I love that increasingly more people over time have become aware of autism. I hate that Autism Awareness month contributes daily to many negative stereotypes of autism, most of it by people meaning to do something good on behalf of autism.
As an autistic, I am meant to be grateful to all these wonderful people who are sacrificing their time, talent and money to be helpful to people like me. Some of the time I am grateful, but not always. In fact, even though I used to love Autism Awareness month, last year I began resenting autism awareness as “the accomplishment” of the month of April. We really do need acceptance of autistic people and before you say you accept autistic people, please read on and consider…
Awareness Leads to Acceptance for Most Disabilities
People who are aware of blindness do not expect blind people to try harder to see.
People who are aware of seizure disorders do not expect those who have seizures to try harder not to seize.
People who are aware of paraplegia do not expect paraplegics to try harder to walk.
Awareness Does Not Lead to Acceptance of Autistics
People who are aware of autism DO EXPECT people with autism to try harder to act like they are not autistic. This is why autism awareness is not enough. As a society, we do not need to have a specific campaign for acceptance of other disabilities, but because society expects autistics to try harder to act non autistic and then blame us when we fail to meet their expectations, we DO NEED a campaign separate from autism awareness to clue people in that autistics really need acceptance.
Accepting Autistic People Means:
- Give a few moments for processing after spoken directions. This means have patience and wait for a few moments so we can process your words and perhaps respond. If more people would do this one simple thing many more autistics would be able to participate in life.
When we become aware of blindness we wait while a blind person scopes out their way with a white cane. When we become aware of autism we do not wait for an autistic person to process what is being said, much less give time for them to formulate and give a response. Please accept us. We often have processing delays. This is not a cognitive issue. It is our neurology.
- If a child has meltdowns we can work to prevent them. When an adult has a meltdown you can know they are very likely working on trying to prevent them as much as possible. Even so, sometimes circumstances are such that explosive behavior is triggered. Explosive behavior is a predictable, progressive cycle. If you learn the personal whispers of this sort of behavior cycle it can often be prevented. When in the midst of a meltdown it is impossible to stop it due to the fight or flight mechanism having been triggered. The physiological survival mechanism has been tripped and no logic will make that stop! This is not a cognitive issue. Ensure safety and privacy as much as possible while cutting out all extraneous sensory input.
(For more information here is an article I wrote that explains how to prevent explosive behavior. http://www.specialeducationadvisor.com/preventing-meltdowns-outsmarting-the-explosive-behavior-of-individuals-with-autism-spectrum-disorders/ )
When we become aware of seizure disorders we do not expect a person who is seizing to stop the behavior, but instead recognize it for the neurological event that it is. In fact, we don’t even refer to seizures as difficult behaviors!When we become aware of autism we still expect someone at the height of an episode of explosive behavior to stop it, even though immediately prior to the explosion the physiological fight/flight mechanism has kicked in. Nobody else whose survival instinct has manifested is expected to act in a rational manner and stop fighting for his life except autistics. The time to prevent a meltdown is early on – not after survival instinct is present. This is not intentional behavior that can be stopped at will. Please accept us. Work with us, not on us. We too want to outsmart our explosive behavior. Please do not ascribe willful stubbornness where there is none.
- Please honor our autistic sensory system. It is a system that does not automatically regulate so must be done intentionally. Some need down time in a quiet place for their system to organize the input it has already received. Others need intentional sensory input when their system doesn’t automatically pick that up from the world around them. Sometimes one person will have both needs at different times in the same day.
When we become aware of paraplegia we do not expect the wheelchair user to “suck it up and get over it” and start walking again. We understand paraplegics need their wheelchairs and we do not fault them for their neurology, expecting them to do better. Autistics can learn to regulate their sensory system intentionally just like paraplegics can learn to use their wheelchairs to get where they want to go. Even so regulation needs, just like wheelchair needs will not go away. Please accept us. Our autism neurology is part of who we are in this world. We cannot simply “suck it up and get over it.”
Once again the month of April has come to an end. Everyone should be well aware of autism. Are you? If yes, will you please start accepting autistic people? Autism bestows upon each of us a unique mixed bag of blessings and challenges. Awareness means you see the challenges, the behaviors, the not fitting in with the rest of society. Acceptance means you stand with us in learning to use our strengths to outsmart the challenges autism puts in our way so we can be all we want in this world. Expecting us to look and act neurotypical is not acceptance – it is merely autism awareness. April is officially over – we have had enough awareness already! Now that we know better let’s do better.
Painting is Goldenrod 3
Available in sets of 5 greeting cards
and acrylic prints in three sizes
in the Art Store at www.judyendow.com
BOOKS BY JUDY ENDOW
Endow, J. (2019). Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.
Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.
Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2010). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.
Myles, B. S., Endow, J., & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.