My son was diagnosed with Asperger’s Syndrome (AS) when he was five and a half. Typically, children that young are not diagnosed with AS. AS is said to be a high-functioning form of autism where the keys to diagnosis are: (a) short self-stimulatory behaviors rapidly repeated, like flapping, spinning, and rocking; (b) social awkwardness that includes difficulty reading social cues, understanding voice tone, and interpreting facial expressions; and (c) late development of speech. The symptoms of AS were pretty obvious to the team that worked with him, as it was to us, his parents.
We wanted to get some sort of diagnosis so we could explain to teachers and family. We also wanted to be able to share with them researched strategies proven to be effective for young children. When a diagnosis of AS was given we made a decision to never use the “A” word at our house when discussing him. Our 14-year-old daughter has an idea of what labeling might do since she has read some research material I used while getting my master’s degree in special education.
Most of our friends and family are on board and “get” my son. They have read books and articles to be supportive. Additionally, we see these same supportive friends and family implementing techniques my husband and I use daily. However, not everyone in our life has come to terms with the AS diagnosis. One family member thinks that we should not let him bounce around the house stimming, although it helps him calm down and helps him organize his thoughts and feelings. Another family member suggests he is only acting that way around me.
Since receiving the AS diagnosis seven years ago things have settled down. Tantrums are rare and he has made a couple of very good friends. They are not his age, but he is happy.
I teach special education. I live special education at home with every statement I make to my children. Everything is designed to teach empathy and encourage good citizenship. My husband Jeff and I work together and would not change a thing about either of our children. Both of our children are seen as kind-hearted, thoughtful, and helpful. Since my son does seem to be so “normal” on the surface, people are shocked when something happens.
Such a surprise occurred two years ago at our citywide BBQ contest, where thousands of people come. My kids go every year and hang out in a tent with us. My daughter will walk around with her cousins. However, my son is stuck either to my husband and me like glue, or plays his DS in the corner of the tent. After five and a half hours of being in the tent on this BBQ day, I knew it was time to take him home. I’d like to say it was my stellar mommy skills kicking in, trying to avert a tantrum. However, I suspect I decided to take him home due to the huge tears he was able to produce (he is able to spew tears if he thinks of something sad- real or imagined) proving he was ready to go home. All was well, the backpack was loaded with his electronic devices and games, the kisses and hugs were given good bye, and we were on our way.
The exit with a bit of a drop-off was about twenty yards past our tent. You would think that tragedy struck from the blood-curdling scream my son made when he fell down at this drop-off. We attracted about a hundred people from the scream. The police walked over to check on us. One man was certain my son needed an ambulance. A nurse stopped by to check on us. She asked if he was ok, I started to tell her, “He’s ok, he just has A…..” She stopped me and said she understood. Immediately the nurse started getting people to go away asking them not to hover and stare. I will forever remember her not allowing me to say that to her. She did not need an explanation and my son did not need an excuse for his behavior.
I am holding my son in my lap in such a way to administer pressure to his torso, a technique that helps him feel more comfortable when he is upset, sad, or scared. Meanwhile, I am insisting to everyone that he is fine. I asked the man, who suggested my son needed an ambulance, to go away since he was just staring at us with his group of friends. Similarly, to the people passing by I replied, “his knee is only scraped”. To the police, “there is no need for police intervention”. At this point I had tears running down my face. How do you explain any of “this” to a group of strangers? How do you say “this” is part of his thing? “This” is part of his hyper-sensitivity to pain (along with light and sound). “This” is part of who he is but most of the time he is smiling and happy. How do you explain those things to a bunch of people who are whispering and pointing?
Several minutes have gone by, my daughter has run back to our tent to retrieve a cousin, band aids, Neosporin, wipes, and a tissue (for me). My niece is wiping off his knee and he is still screaming. People are still staring. The nurse had tried to get on her bus to go back to her car, but came back when another round of people came to gawk.
My constant coos of “you’re fine” did not help. There is no getting a child with perseveration issues like this to just stop of his own accord. I calmly suggested to him that he needed to stop screaming because the police thought I was hurting him or his leg had fallen off. Since neither had happened, he needed to not scream quite so loudly. Surprisingly, that angle worked.
Once he was bandaged (three small band aids). We gathered our things and hobbled home. We only live a couple of blocks away. He was even able to run across the bigger street (he gets nervous in the road and needs to get across quickly).
On the way home, after my children and I had settled down, I thought it might be a good time to discuss with my son how the screaming led all the strangers to believe that his leg had fallen off. He said he would try not to freak out like that again. I thought it important to address the incident again in the morning.
“I know you were tired. I know you wanted to come home. Can we think of some things that we could do to not freak out when you get hurt?”
He replied, “I am not good at not freaking out when it hurts super bad and it is bleeding. You know if that does happen again I will start crying again.”
I answered, “But, can you try not to scream?”
Nodding his head yes, “I will try not to scream.”
This was not a tragedy, but I laid awake that night for hours trying to think of ways I could have avoided that huge melt-down and crowd-gathering event. One, I could have stayed with him at home. Two, I could have hired a sitter (though the whole town was at the BBQ). Three, I could have taken him home earlier. Four, I could have not cried in public. I realized the tears were an outward demonstration of several feelings. First, I was embarrassed that I, all knowing self-proclaimed wonder-mom, had lost control. Second, in the 5 minutes my son and I were crying (his a bit louder than mine) I mourned the inability to get strangers to accept my child was different (to their standards). Finally, there was some anger or frustration that people pointed, whispered, and stared. I did not understand this as I had taught my own children it was inappropriate to point, whisper, and stare in “Good Citizenry 101”, apparently the nurse took the class too!
About Heather G. Wolf
I’m a second year doctoral student at the University of Kansas. I am studying technology interventions in the special education department in addition to my part-time job as a special educator and my full-time job as a mother.