I spend a great deal of time speaking about autism in public and helping parents develop life and homework strategies for their Aspie children. This work is hard, but I feel it is very rewarding to help children avoid the stress and turmoil I had while in school. Many times, parents will say things like “I can’t imagine you had this problem” or “you are so organized” or the most common, “but it seems your autism is so mild, unlike my son/daughter.”
I know parents do not mean to offend me when they say these things, but such phrases are upsetting to me. Every time a parent uses these phrases, I am immediately demoted and my hard work goes unrecognized. The truth is I worked very hard to develop and incorporate strategies that help me function. In addition to my past efforts, the ongoing work to maintain these strategies encompasses so much of my mental energy that I must plan times to retreat in order to avoid meltdowns.
To illustrate my point, and add validity to my plea, I decided to write a two part piece on my troubles in school and how I adapted. For this first part, I interviewed my mother about how I was when I was young, talking about my struggles in school, my differences and how if affected my life. In the second part, I will talk about how some of these problems persist and what I do every day to cope with them.
For the first time since I went public with my diagnosis, my mother will talk about my struggles in school and what I was like as a child.
Laura: Thanks, mom, for doing this. You have said in the past that you raised three children before me, my siblings were 17, 15 and 8 when I was born, but that I was different. What do you mean by that?
Mom: It’s is hard to outline because it really was just a feeling. You saw things from a different angle than the rest of us. You were very dogmatic about your views, even at a young age, and you over-analyzed everything. With the other kids, if they got in trouble I only had to say with a firm voice, “don’t do that.” If I did that to you, you would get upset and tell me to stop screaming, even though I wasn’t screaming. I had to go around the issue to get you to understand what you did wrong.
You could do difficult things, but not easy things. For example, you could do higher math, but you couldn’t multiply. You struggled to learn to tie your shoes, learn to read, and learn to ride a bicycle. However, you had an advanced vocabulary and an exceptional use of words, even as a toddler. One oddity is you could dance at age 4, you could play the violin well at age 9 but you couldn’t tie your shoe until you were 12.
Here is an example of how advanced you were; you came to me and said, “I tink I am going to put on my coke and glugs because it’s berry, berry cold outside.” You couldn’t be any older than two, but you always talked in complete sentences, even though you sometimes stuttered. It wasn’t stuttering like in the King’s Speech. It was stuttering entire phrases like you couldn’t get the words out fast enough. This was still very advanced speaking for a child.
On the other hand, you didn’t like change, at all. You didn’t like certain clothes because you didn’t like the texture of the fabric or the color, especially if it was yellow. You said yellow gave you a headache. Once, when you were an infant, I put out flowers while you were napping. When you awoke, I brought you into the room with the flowers and your entire body stiffened up and your eyes locked on to the flowers. Most infants don’t notice these things and even once kids do, they don’t stiffen up or freeze like you did.
I can’t really explain this any better, you were just different.
Laura: I have been told by my teachers that I showed exceptional talent in dance and music. What did you see?
Mom: Anything in the arts field you caught onto very rapidly. If you heard a song once, you could play it. In dance, you watched a class you weren’t even in and you caught on to the steps. So, the teacher, Ken Passman, came to me and asked if you could dance in the show. You did really well, every step was right, but because you watched it from the doorway, you did everything backwards. You didn’t know to change perspective, but you knew the steps. Even with instruments, you could just figure it out on your own, like with the piano and the guitar. Even with the violin, you learned very quickly, played in tune and never squeaked. Never.
Laura: When I was in school, I struggled a great deal. What areas did you feel were my weakest?
Mom: You had trouble understanding written directions. Every night we would sit down to do homework in the kitchen. You would try to work and then get frustrated and then I would have to explain the instructions to you. Once you understood the instructions, you would do it. It may have had something to do with your reading. You had trouble reading and understanding what what it meant, but you could memorize your spelling words flawlessly. You could memorize anything. At age 6 you memorized all the trivial pursuit cards.
Other problems….I never understood this really, but you would come to answers that were correct, but you couldn’t explain how you knew it. It is sort of like you playing the piano. You don’t just play chords, you play complex classical tunes with the proper fingering, even with no instruction. How do you do that? There were certain things you were not taught, but knew and knew in great detail. Sometimes you would speak in detail about off the cuff things that shocked us all.
With school, you never understood the concept of school. You didn’t understand why you had to go. You said you knew all those things so you didn’t need to go. You especially hated the first two weeks of school when they reviewed last years material, and you liked to take every Wednesday off. Yet, you loved to learn. I think it was the approach schools use that didn’t appeal to you. You liked learning at your own pace and you don’t filter out anything. All the things the teacher would say and all the text in the books were all equally important. You couldn’t understand why they wrote a paragraph if you only needed to know a part of that paragraph. It was like you felt you had to memorize verbatim everything at school.
Prioritizing was an issue too. For example, lets say you have a list of things to do. One might be to make a cup of tea and a piece of toast. You put the bread in the toaster, which means you can check that off the list. Next you make the tea, but as you are making the tea, your toast starts to burn. Instead attending to the burning toast, you would ignore it and would finish the tea. You wouldn’t know which needed your attention first. You had trouble deciding which things are more important, not in a selfish way, but you are just unable to prioritize incoming events. You still do that.
Laura: What about emotions. Did they affect the way I performed?
Mom: You would prepare and prepare and prepare for a concert. You were meticulous and conscious about what you had to do, but then we would get to the concert and discover you forgot to bring your music, or your violin. You seemed to get overwhelmed with the excitement, which hindered your ability to stay organized.
Emotions would make you freeze. No one could look at you and know if you were enjoying yourself, or were upset. I would know you were upset because you would play your violin or rearrange your bedroom, which I found strange because you don’t like change.
When it came to school, you were always frustrated. ALWAYS. If we had known then that it was Asperger’s, I probably would have put you in a different school where they had people who could deal with autism. I would have had ammunition to get help for you, and it would have relieved my mind a lot. I couldn’t understand why these things happened to you when you seemed so capable, but a diagnosis would have given a real reason making solutions available. You were so intelligent, I couldn’t see why you struggled through school. Knowing autism tells me why.