“There’s Rules Everywhere! Suck it Up!”

I have written about many of my experiences with people who just didn’t know how to work with me. Some of these people were just plain mean, while others just didn’t understand me no matter how hard they tried. I want to emphasize one thing before I get started explaining the topic. Autism and Asperger’s Syndrome will never be fully understood. I am strongly against the controversial organization “Autism Speaks”, because they make Autism sound like it is a death sentence. The vast majority of people who support this organization do not have Autism themselves. Temple Grandin has strongly spoken against curing Autism.

I believe there’s a point where mild autistic traits are just normal human variation. Mild autism can give you a genius like Einstein. If you have severe autism, you could remain nonverbal. You don’t want people to be on the severe end of the spectrum. But if you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social ‘yak yaks.’

I have come to realize that many of the parents who want to cure Autism do not have the skills and/or motivation to take care of them and help them. I watched a video on YouTube called “Autism Every Day”. It was pretty much a video of parents complaining about how difficult it is to raise a child with Autism. There was a comment made by one of the mothers that truly angered me. The mother allegedly talked about wanting to put her daughter in the car, and drive off of the George Washington bridge. Before anybody says anything, I am aware of how hard it is to raise a child with Autism. There are many Autistic children out there who are extremely difficult to control. The parents in the video explained how the child would do things like would climb on top of furniture, run out of the house into the middle of the street and throw objects around the house.  However, the parents on the “Autism Every Day” video are a lot like the one that have been on the show “Supernanny”. As I said, they don’t have the patience, skills and motivation to take care of them.

The fact is there is no cure for Autism. There is no magic pill that will erase all the child’s problems. I stated that Autism Speaks reminds me of the show “Supernanny” because the parents often try to take the easy way out of the situation. I saw one episode on YouTube where the parents were cooking dinner, and the child was complaining about wanting a doughnut. The mother asked “Can you wait until after you eat your pasta and your vegetables?” The child then kept on whining and the mother gave in. The mother took the easy way out and let the child eat a doughnut before dinner. Wishing for a so-called “magic pill” is like letting your screaming child have a doughnut because it will stop him or her from screaming. The mother should have said “You will not get a doughnut until you eat all of your pasta and vegetables”!

I have began to notice that maintaining structure in the household and in the classroom is the only way to help an Aspie child understand the real world. Therapists can certainly help with this. I had a therapist when I was around six years old who would draw a visual schedule of the activities we were going to do during the session, and the order we will perform them. We would do two or three different activities during the two-hour sessions. She would either draw a picture of each activity on paper, or print out clip arts pictures and write text below them. This is a great tool to teach time management skills, and it can also help them develop social skills. My mother taught me to write down possible activities I could do with a friend when they come over to my house. I would write down a few suggestions of things we would like to do. I would write it down on a small sheet of paper and keep it in my pocket. This is also a great skill for planning a party or other event. I am a senior this year, and I am planning my graduation party. I looked for catering companies online and I copied and pasted their street address, phone numbers and their website URL into a word document.

While structure is an essential component to develop into a successful adult, there are quite a few problems I experienced with structure during my adolescent years. From my freshman year into my sophomore year of high school I worked with a therapist who was very pushy and demanding. The coordinator at Wesley Wonder Kids recommended him because she felt it would help boost my confidence if somebody pushed me to “step out of my comfort zone”. I hated the fact that I was not “normal” and that I didn’t have friends to talk to and spend time with. Our sessions mainly consisted of role playing and talking about how my Autism effected my ability to connect with people in school. I hated doing role plays because they were just imaginary conversations. I didn’t see the point in asking somebody “what do you like to do”? or “what is your favorite color”? It takes quite a high level of socialization skills to recognize things like facial expressions or tone of voice. I was also extremely frustrated with Wesley Wonder Kids. I am going to refer back to my entry titled “Scary Stories From The Real World”. Here is the situation I am going to describe.

Each group member was assigned a date on the calendar, and on that specific date you were supposed to bring a desert type snack and choose a topic the group can easily discuss for fifteen minutes. On one particular day, it was another group member’s turn to choose a topic. When it came time for coffee talk, he didn’t have his topic chosen like he was supposed to. It took him five minutes to finally choose one, and he finally chose “pop culture”. Everybody had their favorite movie, band or television show to talk about and I had absolutely no idea what to say. All of the group members would talk over each other, and the parents could hear them in the lobby next door over the air conditioning vent. Because coffee talk was the last activity of the night, I was only focused on going home and going to bed. Then a voice from one of the staff members rang out “Derek, we haven’t heard from you yet. What do you have to contribute to this discussion?” I responded by saying “I don’t know”. The group members turned around and started pressuring me to say something, similar to most of my peers in school when they would ask me things like “Why Are You So Quiet”? When it finally became time to leave, I muttered in disgust “I hate being put on the spot”. Another staff member heard my remark and said “You have to suck it up, you are going to be put on the spot for the rest of your life”.

I was completely mortified when I heard that comment from the staff member. I came to the general consensus that most of the structured social skills groups are designed for kids with kids who can’t follow directions, demonstrate very poor social skills or have a lack of respect for people, especially authority figures. I was never the kind of person that would mouth off to a teacher or destroy property because of anger issues. While we were in that building for the entire group session, they would preach about the outside world instead of engaging and teaching.

I worked with a different person after I left Wonder Kids, and he was a Strength Based style therapist. I was glad he used by strengths and helped me build on them to improve my social skills. It helped me because I didn’t have somebody shoving social skills down my throat and forcing me to step out of my comfort zone. Lenape has helped me become a success in the real world rather than making me into a P.S.S.A test score or writing negative things about me on my IEP.

My final thought is that parents and teachers have to determine how much they trust an Asperger’s teenager before they shove rules down their throat. They have to talk to the child and listen to them if they are having an issue with something. I am grateful that I had the opportunity to attend the Computing Workshop and meet my good friend Aaron, because it helped me improve my confidence to reach out to people. It gave me real world interaction with people without rules, structure and role plays being shoved down my throat. The Computing Workshop also gave me the confidence to stand up for the things I believe in. We need a lot more of those organizations designed for people with differences.

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3 thoughts on ““There’s Rules Everywhere! Suck it Up!”

    • That was a quote from Dr. Temple Grandin. Many of the famous artists and scientists in history and who are alive today have either been diagnosed with Asperger’s or they have exhibited similar characteristics to people diagnosed today.


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