Five Things the Parent of an Autistic Child Wants You to Know
In case you didn’t know already, April is Autism Awareness Month. In honor of Autism Awareness we are going to be giving you information and resources related to autism spectrum disorders. I happen to know a whole lot about this particular topic because my youngest son, Max, was diagnosed ten years ago with this disorder. And before my son was born, I was working in the field of mental health and special education for over a decade. All together I probably have about twenty five years of experience with autism from the perspective of a teacher and as a parent.
Despite all my years of experience I readily admit that there is still much I do not know about autism. Autism is not an easy disorder to understand or to explain. Imagine how difficult it is for the average person - who has practically no knowledge or experience - to know what to think when they encounter a person who is on the autism spectrum. This is where education and awareness campaigns can help.
I thought I would start off our awareness of autism spectrum disorders by approaching this from a purely personal perspective. Although there are many facts and statistics I could cite for you, I think that it is easier for people to dismiss such information because it is cold and impersonal. But when you see that this disorder is linked to a flesh and blood human being, a child who could be your own, then you might stop to notice.
Every person who has autism is loved by someone. Autism does not exist in a vacuum. We are talking about someone’s sister, brother, daughter, nephew, son, niece or friend.
As a loved one of a person who has autism, here are some things I would like you to know.
1. All people with autism are not like Rain Man. I know many people who have seen this movie and then come to the conclusion that the character portrayed represents all autistic people. My son has never watched Wheel of Fortune nor does he count cards at the blackjack table at Vegas. People with autism are not all savants with super powers. People with autism have a wide range of gifts just like anybody else.
2. People with autism can and do show affection. They just might not show it in the ways you want or expect them to. And this is okay. Some people with autism might have tactile sensitivities. They might not be too excited about a surprise bear hug from someone for example. But this doesn’t mean that they don’t feel love or caring for others. To say that someone with autism is devoid of feeling or ability to show affection is a leap in judgment which makes no logical sense, but endures as a harmful stereotype.
3. Children with autism do grow up. Last year I did an interview with Stephen Shore, who is an advocate, author, and also someone who is on the autism spectrum. He reported that one of the biggest challenges in the autism world is getting people to understand that autistic children will become autistic adults. Services for persons with autism spectrum disorders are predominantly for young children. But what happens when that child becomes an adult? Contrary to some people’s beliefs, most children who are diagnosed with autism do not “grow out of” autism. Many will continue to need some sort of support and services well into their adult years.
4. Some of the “odd” behaviors you may see from a person who has autism may, in fact, be coping mechanisms. Before you label the behaviors of an autistic person as “aberrant” or try to eradicate or extinguish them, take the time to understand the purpose and meaning of those behaviors for the individual with autism. For example, there are many people who try to force a person with autism to look them in the eye. We may label the behavior of looking away when someone is talking to you to be abnormal. But for the person with autism this looking away behavior may be their way to actually process what you are saying. Barbara T. Doyle, author of ASD from A to Z explains: “Avoid turning the head and face of another person. To do so is VERY intrusive and can result in problematic responses. Avoid constantly saying, 'Look at (the speaker)' because we do not know if the individual is actually able to control where his eyes go in every social situation or if the use of eye contact decreases his auditory understanding.” Don’t try to force the person with autism into your version of normalcy. Not only is it disrespectful, it also doesn’t work.
5. People with autism are not puzzle pieces, enigmas, aliens, or Buddhas. They don’t possess supernatural or mystic powers. There also isn’t a “normal” child trapped inside the body of an autistic child crying out for help. Children with autism have the same needs as any other child and that is to be accepted for who they are and to be loved unconditionally.
When you are the parent of a child who has autism you may feel that much of your time is spent explaining autism to other people. Although sometimes it can be frustrating or even tiresome, it is worth the effort. The more people know about this disorder, the more Max and children like him will be accepted and be given a chance to grow within a community of support. Awareness is also an essential part of early diagnosis and treatment. So here is your chance to promote awareness: if you have a child who has autism please share your thoughts here in the form of a comment to this post or write a sharepost. We want to hear from you!