April is Autism Awareness Month and many Macaroni Kid publications are running articles to increase understanding and awareness of autism. This week, Beaver Valley Macaroni Kid is sharing the experiences of a Monaca family. Their son, Josh, was diagnosed several years ago with Asperger’s Syndrome, which is on the autism spectrum. Here, Josh’s mom Danielle talks about Josh’s diagnosis:
When Josh was diagnosed with Asperger’s and ADHD almost two years ago, I do not think we had the expected reaction. We were excited and relieved with the diagnosis. Knowing brought understanding and a plan to help Josh and to help others deal with Josh. What more could a parent want? We already knew how much extra work went into raising a child with Asperger’s, but up until that point he just did not have that “label.”
Asperger’s Syndrome is an Autism Spectrum Disorder (ASD). When people hear the words “autism” or “autistic,” they immediately think that it is a bad thing. I can only speak from my viewpoint, but it is not a bad thing. It’s just something different. I have never hid Josh’s diagnosis from anyone, including him. I am not embarrassed about it, and I do not want Josh to be embarrassed about who he is. I find that sharing his diagnosis is a chance to educate people about Josh, so that they can have a glimpse at the relationship that is possible with him. I have had people tell me they are sorry when I tell them that Josh has Asperger’s. I tell them not to be sorry; he is a wonderful boy. We are lucky to have such a loving, compassionate, personality-filled son.
Once we did our homework on Asperger’s, so many things made sense. As his parents, we were already trained to help Josh based on trial and error at home. We knew what worked and what did not work. We knew that in a daycare situation, he was expected to conform—something he so desperately wanted to do, but could not always do for a variety of reasons: It was too loud, the kids moved too fast; in short, the environment was too unpredictable. Children and adults with Asperger’s thrive on routine and structure. Thankfully, school is rather structured and routine.
Josh does not like loud noises. It was something that we had noticed, but could never understand. We learned how important sensory items are to Josh--I should buy stock in Silly Putty! Wrapping him tight in a blanket calms him down. Individuals on the spectrum lose their sense of self, so wrapping Josh in a blanket helps him regain his sense of where he is. Imagine standing with your eyes closed. Sometimes you feel like you are leaning backward or about to lose your balance, but you are really standing still. In a sense, you are losing your sense of where you are and what your body is doing. Imagine that happening when your eyes are open and how out of control you would feel.
Josh can actually play a game through to the end even if he thinks he is going to lose. If he does lose, he handles it gracefully and now knows to congratulate the winner on a job well done. I know that sounds like a simple skill, but it was something he could not do before. We work on social skills constantly, even to the point of practicing what to do in certain situations. Josh cannot always read facial expressions or interpret the tone of people’s voices, so we practice that also.
We are still working on idioms. Most people with Asperger’s take what you are saying literally. So if you say, “I’m so hungry I could eat a horse,” Josh will think you are going to eat a horse. He also will not really see anything wrong with eating a horse. When he speaks, sometimes he says things differently. Recently we were having a conversation in the car, and I was taking something that had happened and turning it into a teaching moment about something else that had occurred earlier in the morning. Josh said “Mama, that has passed away. Let’s not talk about it any more.” I understood what he meant—I just didn’t expect the way that it came out.
Trust me, it’s not a bed of roses, like when he is having a meltdown, but you cannot figure out what triggered it. Sometimes, we find out it was triggered by something that happened two weeks ago or a month ago or three months ago. That can be very difficult, as it can be when you have been called or emailed by the school at least twice a week for three weeks straight. Or when he is having a meltdown and all you want to do is hold him, but you cannot even touch him without escalating the meltdown. It is not fun.
We also have learned to plan for events--big or small, we try to prepare him prior to going anywhere. The less he questions what is going to happen, the calmer he is while he is there and the less likely he is to have a meltdown.
Having a child with Asperger’s requires forethought, which we do not always consider or think about. It requires preparation, which we do not always remember to set up. It requires patience and tolerance, which we do not always have. But mostly, it requires love, and that we have in abundance.
