He doesn’t look Autistic: And other false ideas about Autism

Eric and I have been talking about what I could post next on the blog. And when he had time today he put into words what we have been talking about.  So here is Eric's post on some of our thoughts that might give people some more understanding.

Raising two sons with autism spectrum disorder (ASD), has helped me to see, in a very personal way, what ASD can look like. Before experiencing this for myself I had some of the same misconceptions that many people have about ASD. As I speak to people about this disorder I often get the same questions and I wanted to address those questions/concerns/misconceptions to help raise awareness and understanding. I also want to emphasize that I am addressing them from my limited personal experiences and not as a medical professional.

1.       He doesn’t look Autistic. In the grocery store the other day our son was holding something we purchased and the cashier saw that he really didn’t want to let it go. She was very kind and used the hand held scanner to add the item to our list. As we were talking we thanked her for doing that and mentioned that we might have had a meltdown if we tried to pry it from his hands. She looked at him and said the phrase that we’ve heard a bunch of times, “he doesn’t look autistic.” There seems to be an idea out there that Autism is something you can see. Although autism is diagnosed by a series of symptoms, they are also not always present. Some people with ASD might be very social and make eye contact with you, while others would have a meltdown in a public place, some may have repetitive movements like shaking their head, or rocking, while others will not. On good days our sons with ASD might act ‘normal’ for several hours at a time. Taking a glance or even a serious look at a child will very rarely help you know if he is autistic.

2.       My child isn’t autistic, he’s smart. First off, try not to say this to a parent of an autistic child, it’s just not nice. This is another misconception about ASD that I think originates from a lack of awareness of what autism is. Most people who say this are thinking about severe cases of autism. As clarification, autism has a huge spectrum that covers challenges including social, communication and behavior. Just because a person can’t speak doesn’t mean they are not smart, nor does the fact that someone can speak mean they have anything intelligent to say. In many cases people with ASD have a high IQ they just have a difficult time expressing what they know. It is very likely that we could learn a lot from people with ASD, if we could just figure out a way to tap into what they know.

3.       How can a diagnosis help? This is a great question that is often asked by those who have noticed some delays with their children and they are wondering if it is worth the work to get an official diagnosis. In some ways, having a diagnosis doesn’t help. There isn’t some magic pill or shot that will cure your child of ASD. But in other ways it can make all the difference in the world. We had two ‘normal’ children before having a child with ASD. The first almost three years with Matthew were frustrating, we tried everything that we did with our first two children and nothing was reaching him. The day we got the diagnosis of autism changed my perspective. When I knew he wasn’t like other children I changed how I thought and that has helped me be a better parent. I gained understanding and that made a huge difference. In addition to understanding, we have now been able to get support through our local school district and early intervention. The wonderful professionals we have worked with have given us so many tools to help Matthew. Some tools work, some don’t, but we don’t feel so alone, and that means a lot. It has also been shown that the earlier a child is diagnosed with ASD, the more effective the therapies are in helping to reduce unwanted behaviors.

4.       They just need discipline. This idea goes hand in hand with the ‘if they’re hungry enough they’ll eat it’ line of thinking. For “normal” children when they misbehave you can reason with them, tell them no, or take the “whatever” away for a while and the behavior will stop or improve.  However for children with ASD that is not how it works. For example, one of our sons draws on the walls. If there is a marker, pen, pencil, crayon or anything to write with left out he will draw on just about any surface. We have tried doing everything we can think of but at the age of almost 4 it still persists. The only way we can stop him is to put every writing implement out of his reach. For the past almost year, we get crayons down only when he has paper and we can monitor him coloring. We encourage writing on paper only, and his behavior is finally beginning to change. This example may seem extreme for any parent with ‘normal’ children, but for parents of children with ASD, this is commonplace, and the kind of thing we need to do for almost every aspect of our lives.

5.       What kind of future can I expect? I don’t know. For me this is one of the hardest questions. I don’t know what to expect for education, career, independence, or marriage. Each day I need to compare Matthew only to Matthew and Andrew only to Andrew. I have hope that all we are doing will pay off and they will be able to one day live independently, and be contributing members of society, but I have no idea.

Through our experiences over the years I have learned so much about ASD, and I know there is so much I still need to learn. I am so thankful for wonderful and supportive friends and family who continue to ask questions and learn what they can about ASD so they can better understand our children, and know how they can help us. I hope this post has helped.