AUTISM: Myths, and Facts

April is autism awareness month, but over the last few years it seems as though most people are aware that autism exists.  In fact, with the information circulating social media, and the internet, most people even have an idea of how prevalent it is.  What those who are affected by autism want now is autism acceptance.  

When my son was born, we knew that he had many birth defects, and as mentioned in other posts, we found out later on that he has a genetic condition called 22q11 deletion.  Over the years as he was served in the special education program at the school, he had speech therapy, occupational therapy, and was taught in a self-contained classroom. Never along the way with the teachers, school psychologist, therapists, or doctors, did anyone mention the possibility of autism.  In fact, it was after we had taken him out of school, and decided to educate him at home, that I began to wonder. I had began attending a local support group for families who have children with special needs. As I discussed different issues that our children were having, I began to see how many behaviors that my son exhibited that young people with autism often displayed.  

When I first suggested to my son’s pediatrician that we get a referral for an autism diagnosis, he just about laughed in my face.  He told me that my son already had a diagnosis. He couldn’t possibly have 22q, and autism. I calmly explained to him that there are people on a online support group for 22q that have children with a dual diagnosis.  In fact, autism is even slightly common for those with 22q. Our doctor still resisted, but I did not leave that visit without a referral. What I had not learned while my son was in school, but was now learning to do was to advocate for him.  After a few months on the waitlist, and a very thorough screening process, my son was indeed diagnosed with autism. Even though I knew it was coming, I still grieved for yet another hurdle for my son to overcome.

After obtaining my son’s diagnosis, we began to educate ourselves about autism.  One of the books that we read together was The survival guide for kids with autism spectrum disorders (and their parents) by Elizabeth Verdick.  Even though my son was fifteen, we still read it together so that we could discuss it along the way.  Between reading this book, other books, online articles, and discussing life with autism with other parents, there has been a lot that we have learned along the way that I really wish that the general population knew.  It is difficult to condense it all, but I will try my very best.

What we learned about the myths and facts of  Autism Spectrum Disorder or ASD:

FACT: Everyone with autism is different: You meet one person with autism, and you have met one person with autism.

FACT: Sensory issues are real.  Not every person who has ASD has sensory issues, but for those who do, they are very real.  This can affect the food that a child on the spectrum will eat, what clothing they wear, and how they behave.

MYTH: Meltdowns are misbehavior. When a person with ASD can no longer handle the amount of sensory overload that is coming in, there may sometimes be what people call a fit, or a tantrum.  Really this is just a breakdown of having to hold it together all of the time. Sensory overloads can happen because of the lighting in a room, the sounds, the feeling of something on the skin, or even just the inability to control the emotions in the moment.

FACT: Stimming can help a person to self-regulate sensory overload.  Stimming is often seen as flapping of the hands, but it can also be rocking back and forth, repeating a common phrase, or any other nervous tick.  Stimming is usually used as a way of either lessening the amount of stimuli coming in, or adds to the amount of stimuli when there may not be enough.  The next time that you see someone flapping, or moving back and forth, just know that it helps to calm them, and there is no need to wonder if they are ok, or to stare.

MYTH: People with Autism don’t have friends or close relationships.  Yes, one aspect of ASD is that it is often difficult to socialize with other people.  This does not mean that those with ASD do not have close personal relationships. Most children on the spectrum want to have friends more than anything else, but may just not know how to go about making one.  This may make it more difficult, but not impossible to make close friends, but once a close friend is made that relationship can last a lifetime. Most people with ASD also have close, loving relationships with family, even if they don’t want to hug or maintain eye contact.

FACT: Eye-contact can be difficult for one with ASD.  As mentioned before, not every person with autism is the same, but having difficulty with eye-contact is pretty common.  Looking someone directly in the eyes sometimes causes too much sensory stimuli. Making someone with ASD look you in the eyes is often counterproductive.  I have read many times where someone with ASD has been taught to look people in the eyes to be respectful, but then can’t hear what it is that the person says because of the overload while looking them in the eyes.

There are so many myths, and facts of autism, and as stated before, no one on the spectrum is the same, and that is why it is called a spectrum.  The most important things to remember this month is that everyone with autism is a person. No matter what their intelligence level, ability to communicate, or level of sensory self-regulation, they all want one thing, and that is acceptance.  Not the acceptance of who we want them to be, but of who they already are.