by MANDU USORO
If you want to know what autistic people look like, observe your friends, acquaintances, and the people in your own family circle. Every autistic person is different, maybe one of them has the disorder, and as the saying goes:
“If you have met one autistic person, there is a huge likelihood that the next autistic person is not going to be the same as the last.”
Autism Doesn’t Have a “Look”
Since the birth of our now teenaged autistic son, there have been many moments where someone has said, ‘Well, he doesn’t look autistic!’ This is really frustrating for me as a parent of a special needs person because it is a perspective of what people ‘see,’ instead of what an autistic person can do. It is also an educational moment for me to explain the nuances and in-betweens of this neurological disorder that can manifest so very differently in people.
Neurotypical Isn’t Our Normal
Neurotypical Isn’t Our Normal Autism (pronounced ‘AWE-tizem’) or Autism Spectrum Disorder (ASD) is a developmental disorder that affects social and communication skills. Some autistic children have a hard time playing with others and making friends, and some cannot talk. Many autistic children display behaviors including repetitive pouring liquids from cup to cup, spinning around and not getting dizzy, not wanting to be touched or hugged, lining up toys, or screaming for hours.
Of course, as I said, every autistic child is different. There are varying levels of this disorder, which is why it is called a ‘spectrum.’
My 14-year-old, who is on the high end of the spectrum, also has high anxiety, ADHD, and some nuances of OCD (obsessive-compulsive disorder). He has his good days and his bad days, just like we all do from time to time.
Imagine for a moment, not being able to socially interact with people your own age, to know the right words to say when spoken to, or to understand fun, interactive jokes that everyone else “gets.” For instance, if you say, “It’s raining cats and dogs,” a child with autism might respond by saying, “How come you can see them, and I can’t.”
In our son’s case, he understands things very literally, not abstractly. So, in school, it can get tricky because every teacher explains things differently and, in most cases, abstractly. So, it can be incredibly challenging as he moves through our public-school system. If supports and accommodations are not in place so that abstract concepts can be broken down, then he is just sitting in a seat and not really learning.
Advocacy Starts at the Diagnosis of ASD
So, from the time your child initially receives a diagnosis until they reach adulthood, becoming your child’s advocate is so extremely critical. Right now, no one expert has been able to confirm what causes autism, but one thing is certain: bad parenting IS NOT the cause of this impairment.
Unfortunately, you still have some people who are ready and willing to wave the idea around that a parent can inflict autism onto their child. There are a few people I know who are still quick to say that there is nothing wrong with my son and that he only needs to be disciplined.
Although such an accusation pains me deeply, I now understand that it doesn’t matter who the person is or how well educated they may think they are on the subject of autism; no one can truly comprehend what it’s like to raise an autistic child unless they are raising one themselves.
You Don’t See How Special this Autistic Person Is
As time passes, I have come to the conclusion that there is nothing I can do about people who don’t understand our situation. Autism is a part of my family’s life and forever will be. A long time ago, I accepted that we just do not fit the mold. We do what we can and try to get over the next challenge that autism presents.
My husband and I laugh in “autism’s face” when we celebrate our son’s triumphs, and continue to be humbled by his gift of playing piano by ear since the age of 5 (and other talents).
In addition, we have also balanced being parents to our now adult daughter as well, keeping in mind that this is a family affair and affects all sides of our family dynamic in various ways. We have shown and proved that autism will not come between our dreams of normalcy and happiness, and we will work toward independence at his pace, not the status quo.
Still, there will forever be a battle to win with those who feel disability has to confront you from a wheelchair. There will always be one person who has trouble understanding and who thinks a good whipping is the only cure.
You Don’t Have to Be Autistic Advocates to Understand
Sadly, for the millions of parents who know better. We can only continue to do what we do best: love and support our children. Nobody else will. We are the keepers of disappointment that developmental milestones don’t apply to us, or when we find that medical insurance does not cover overly expensive and much-needed behavior therapy. We are the proactive and often angry parents questioning why sensory integration and assistive technology are not incorporated into our child’s Individual Education Plan (IEP).
An autistic child may be one of those you see in grocery store aisles shrieking at the top of their lungs or wandering off non-stop at a moment’s notice. So please, do not be quick to judge the parents. Looks are very deceiving and are not always what they seem. Consider that it may not be bad behavior; maybe they’re children with autism.