Once I began to suspect that Devin had autism, I discovered one very important fact: there is definitely a stigma associated with autism.
Autism is an “Invisible” Disorder
Autism is often referred to as an “invisible” disorder — in other words, you cannot usually tell that a person has autism simply by looking at them. It is not until you attempt to interact with the individual or observe their actions that you are able to tell that there is something wrong. In many cases, this can result in people assuming that the individual is just bad or naughty or has some form of mental illness.
If people are assuming that an individual is bad or naughty, it is easy to assume that the individual did not receive the proper guidance from their parents: they were not taught how to act in public; they have not been disciplined, etc. The list can go on and on! So the stigma of autism does not only fall on the individual with autism, but many times on the parents and siblings as well! Especially if the person making the assumption has no prior experience with autism.
Isolation Common for Both Parents and Children
Autism’s disruptive behaviors can cause isolation to become a problem for both the child and the parents, as well as any siblings. The child is excluded from or not comfortable with participating in normal childhood activities: birthday parties, sleepovers, team sports, etc. The activity might overstimulate the child or place them in situations that they cannot cope with.
In turn, the parents and/or siblings may often feel isolated. Friends who used to always be there might turn away because they do not know what to say or how to help. As the child starts school, other parents may not network with the parents of the child with autism because of all the stories they have heard from their child about how the child with autism behaves. Some parents develop the belief that their child has autism because of something they did wrong or failed to do, either before or after the child was born.
Stigma of Yesterday vs. Today
When I graduated from college in the early 1980’s, I do not think I had ever heard the term “autism.” Yes, I knew that there were facilities where people with various disorders were sent to live and that was about the extent of my knowledge. Because that is what often happened to people with autism when I was growing up — they were sent away to live in institutions with other people who were “like them”. They were not out in public where people could see their strange behaviors and listen to their humming or talking to themselves out loud. Basically, they were labelled as “crazy” or some other terms.
As research has gained more knowledge of autism and how to teach people with autism to cope, the opportunities for people with autism have grown by leaps and bounds. Many of the individuals that I have met are actually quite smart — if you can find the key to gaining entrance into their world! Many people with autism have fixations about certain things or subjects — if you can get them to interact with you about the things that they are fascinated by, you would be amazed at what they know. They simply process information and the world around them differently than you or I do!
What Can Parents Do to Reduce the Stigma?
If you as a parent are having trouble dealing with the fact that your child has autism, seek a local support group or counseling. The autism is not going to go away — but how your child(ren) sees you dealing with the situation could impact how they see themselves.
When you are out in public and your child has a meltdown or is flapping their hands or acting strangely and other appear to be gawking, simply say something like “My child has autism.” If you have are in the right setting, you might expand on that statement by telling them some of your child’s strengths. Or some people have business-type cards that they carry, explaining what autism is and some of the behaviors, and simply hand it to someone who is staring or has made a rude comment.
You might purchase some clothing, caps, pins or other items with messages that promote autism awareness. I have several t-shirts that I often wear when I go somewhere with Devin. They serve two purposes — first, once somebody reads the t-shirt they have a better understanding of the situation and second, it is a conversation opener for others who might be experiencing the same thing!
Education is the key to removing the Stigma
The stigma will not go away on its own. It is a matter of educating others so that individuals with autism are accepted and understood. Many people with autism have made amazing contributions to society — among the list of people know or suspected to have autism are actor Dan Aykroyd, Pokemon creator Satoshi Tajiri, veterinarian and speaker Temple Grandin, music composer Wolfgang Mozart and author Lewis Carroll!
What might your child be able to contribute to society? A cure for some disease or disorder? We will only know if they are given the opportunity to develop their interests and feel accepted by all of society!
I would love to hear how you have coped with the stigma of autism or any comments questions or suggestions for topics for me to cover here. Please leave a comment below or email me at firstname.lastname@example.org.