What Does Autism Look Like?
If you want to know what autism looks like observe the people you may know in your friends, acquaintances, and own family circle. Every autistic person is not the same 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.”
In our experiences with our now teenaged autistic son, there have been many moments in time where we still get the comment of ‘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’s capabilities are. It is also an educational moment for me to explain the nuances and in-betweens of this neurological disorder that can show up so very differently in people.
Autism (pronounced awe-tizem) is an illness 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 that may include repetitively pouring liquids from cup to cup, spinning around and not getting dizzy, not wanting to be touched or hugged, lining up toys and screaming for hours. Of course, every Autistic child is different. There are varying levels of this disorder and that 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 age, knowing the right words to say when spoken to or understanding fun interactive jokes that everyone “gets”. For instance, if you say, “It’s raining cats and dogs”, an autistic person may 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 academics it can get tricky because every teacher explains things differently and, in most cases, abstractly; hence the reason it can get 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.
Therefore, becoming your child’s advocate is so extremely critical from the time your child is initially diagnosed until adulthood. 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 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 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.
As time has went on, I have concluded that there is nothing I can do about those who frown upon us. Autism is a part of my family’s life and it 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 to us.
So far, my husband and I have laughed in Autism’s face while celebrating our son’s triumphs and been 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 in between our dreams of normalcy and happiness and work towards independence at his pace, not the status quo.
Still, there will forever be a battle to win with those who feel a disability is only a disability when it screams out at you from a wheelchair. There will always be one individual who thinks a good whipping is the only cure needed for an autistic child.
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 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 children’s individual education plan (IEP).
Some of these children are the ones you see in the grocery store aisles shrieking at the top of their lungs or wandering off nonstop 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; it may be autism.
Mandu Usoro is a US Army Veteran, Parent(Mom) Advocate, Lifestyle Blogger and Owner of HomeSchoolSpecNeedsTidbits. She also holds a BS Degree in Social Work with Associates degrees in Health Care Administration and Psychology. She writes about raising a special needs child, parenting resources she has used through the years as well as personal day to day experiences and challenges in life and her journey.