My son is four and has Autism Spectrum Disorder and ADHD. We are finally in a place where we can breathe, even though it’s often very quick, shallow breaths. The first two years were rough. Looking back, most of it is blurry and hard to recall. The mind has a kind way of often smearing our most difficult experiences.
While I wouldn’t have him any other way, autism and all, his life is nothing close to what we in the autism community refer to as “neurotypical,” meaning someone “not” having autism. Often well-meaning family and friends say things like “he looks totally normal” or “even kids without autism have meltdowns” or “lots of four year old’s are picky eaters.” If you have a child with autism, you know what I am talking about. People trying to normalize what is far from normal.
They think they are helpful or supportive. But they’re not. When someone minimizes autism, it strips away all the thousands of hours of hard work that the person with autism, their doctors, their therapists, and their family members have put in and more than likely will have to continue to put it for years.
When you minimize my son’s autism, it means the thirty hours a week of ABA therapy he attends while his same-age peers attend preschool seems excessive and unnecessary. Yet without therapy, he may have never started speaking. Without therapy, he may never have gotten potty trained. Without therapy, he may never have learned how to play with a friend.
Minimizing his autism means that when we attend a birthday party, and he looks to be blending in with the “neurotypical kids,” he hasn’t lost his autism. He is simply having a good day, and we worked hard to get there.
Minimizing his autism means that you may not understand when you see us at a theme park why he is tethered to me. People with autism often don’t recognize danger and may wander off. I have to keep him safe. We are working so hard to teach him to stay close to us, but he’s not there yet.
Minimizing his autism means that when we have to say no to things, it’s not because we want to. It’s because we know our child won’t be successful in that setting. It could be the time of day, the location, or the distance. As the parents of children with autism, we have to carefully craft successful outings so that our child has good experiences. We must decline what we know won’t work.
What you don’t know is that autism spectrum disorder can impact nearly every single aspect of a person’s life. The most obvious are difficulties with social interactions, problems with verbal and nonverbal communication, and obsessive and repetitive behaviors. But autism often has co-existing conditions such as ADHD or anxiety. Also, up to 80 percent of people with autism suffer from restrictive eating resulting from causes such as sensory aversions, the inability to recognize the symptoms of hunger, or the side effects of medications. People with autism often have sensory processing issues. Sensory input such as sights, sounds, textures, tastes, and noises can get jumbled in their brains, causing sensory overload. This is literally a small snapshot of what someone with autism, including my child, deal with every single day of their life.
When you see someone with autism having a good day remember this, yes, they still have autism. They will always have autism. They will likely always need to work very hard at things that come easy for most people.
When we are out in the community or with friends or family and my son is doing well, the best thing anyone can say to me is, “Wow, he is really having a good day today!” That is what we need to hear.
Acceptance is the greatest gift you can give autism. – Stuart Duncan