Adam happily skipped down the aisle at his sister’s wedding. He didn’t sleep the night before, mind you, so I had to go with the flow. The question I asked myself was what was really important in this affair? First Adam, of course. If he were to have fallen apart that day, I would have aborted the mission. That didn’t happen so my goal for him was to be calm and walk down that aisle. I was going to forget the photographs but he seemed happy enough to leave for the wedding on schedule. I made sure we arrived at the tail-end of the photographs to avoid long waits. I prepared his bag of tricks — food, fidget toys –and a schedule on his iPad using the First Then app. I used the photographs from our visit to the facility earlier in the week, and wrote sentences from the time we entered to the end of his wedding duty. I recorded my voice with the pictures, and he loved that. He reviewed it many times before we left the house.
Arriving to the photography session, there was excitement and fuss — tightening his bow tie, buttoning his jacket, and he didn’t like that much. He wasn’t given any processing time. Then, Adam was lugged by the hand from this photo to that. He wasn’t happy with that either, but maybe there’ll be a couple of decent photos. Dad walked him down the aisle for practice and I asked if he could be excused from the formal rehearsal thereafter so he could have a quiet room and a break. This was successful. He ate some food, sat on the couch and seemed very happy. I think this was his chance to process where he was and that he was finally at Serena’s wedding, for he indeed said “Serena, Serena…” followed by a giggle.
Then we were asked to vacate the groomsmen’s room. We walked about the facility slowly, saying hello to people coming in. We were to wait around near the room where the wedding party would gather prior to walking down the aisle. Dad came when it was time to collect Adam and I took my seat.
Finally, what felt like a mile-long aisle, Adam walked down in the hands of his two older brothers and I fought back my tears. He started to skip a bit…Adam likes skipping more than walking. His brothers brought him to me and he sat down for the rest of the ceremony until the end, noshing on lollipops and a bag of grapes. He was picked up and driven home after the ceremony as I knew he would be exhausted from a sleepless night. Otherwise, he might have stayed at the party a little longer.
Later that evening, I looked at my phone and read “ambulance.” I quickly rose from my seat and called home. My parents, who took Adam after the ceremony, were with him at my home. They heard a sudden crash and went to check on Adam. He seemed okay so my father looked out the window. Their car was totaled in my driveway from an elderly man who lost control of his car (and tried to get away). I was so relieved to hear that no one was hurt, but I felt sick to my stomach that they had helped Adam out to make it possible for all the intricate wedding scheduling to happen, only to have their car wrecked. I know, it could have happened anywhere, but still.
The wedding is now over and after decompressing, Adam is back in school. I’m going through reports as I prepare for this summer and his next school year, as I will be returning to grad school in September in Critical Disability Studies, hopefully to help Adam, and to answer the many questions and issues I raise on this blog. There are so many that I would like to make a contribution to the body of work on what kinds of help autistic people need in order to contribute to society as autistic people. I thank many autistic people for helping me with that question when I first created The Autism Acceptance Project. These conversations happened years ago when I was seeking input from autistic adults in creating an autism organization. Many parents want to get involved and for good reason. Yet, I thought that the charity models weren’t supporting autistic individuals well, and wanted to discuss this. I feel it’s now time for me to go back to the drawing board and contribute to the science.
Adam recently had a series of standardized academic tests. The testers acknowledged in the report that these standardized tests do not accurately reflect Adam’s “true potential,” and they have ordered the Ravens for him. Still, the report puts him in well-below average ranges. I don’t think there is any typical parent, who came home with a report card without at least a B, who hasn’t inherited the same feelings of what it means to be “successful.” My little guy who stims a lot, who can’t sit still, was placed in a little room for three days and expected to work for two hours at a table — while some painful teeth were coming in. While the testers acknowledge the many limitations for testing autistic folk like Adam, changes have not yet been made in terms of how we evaluate the autistic population. The testers stated that there should be computerized tests and I would add, there should be a sensory room and tools such as seating pads, and even a trampoline if necessary.
It was suggested that Adam have lots of breaks in school, use the iPad and computers for learning, yet the tests to determine autistic ability, intelligence, as well as areas that need to be further supported, don’t yet accommodate this learning style. They noted that in some areas Adam functions at a 13-year-old level and in others (like Math) at a grade one level. When I was in the testing room with him, I also realized that the many items they were asking Adam about, have NEVER BEEN TAUGHT to him. How, I thought, could he answer so many questions accurately when no one has even taught him these very specific things? I realize that no matter how much I talk about this, my comments seem to fall on deaf ears. Yet, this is an important link and a reflection of how Adam can teach himself. In this alone, we have to acknowledge an autistic learning pattern and ability to learn overall. In particular, Adam had excellent pattern recognition, and he knew sophisticated words that I know he has never been taught in school. Since he’s been very little one can always catch him reading a book, although I think most people don’t believe he was actually reading.
When I hear on the news of an autistic person having disappeared with a description of their functioning level, it frightens and disturbs me. I cringe when I hear that the person “functions at a five-year-old level” when they are 16. True, there is real disability here. But if I know Adam well, and I do, watch him type what he wants for a YouTube video, or something on the Internet. Listen to the teachers who also see Adam “perform” with 100 per cent accuracy one moment, only to unravel to “a four-year-old level” the next. That to me is the nature of Adam’s autism. Having people understand the variances is so difficult and it’s tempting to want to give up. Making sure Adam is not placed in a class where he puts the same puzzle together seems to take enormous fortitude. We have to continue to serve, to address disability not as something to be ashamed of, but respected and accommodated, while ensuring autistic people receive the education that they rightfully deserve. This has to start at understanding not only the impairments but in the pathways and methods that are successful to learning. In addition, our charities and scientists have to work harder in promoting the value of the autistic population. Without this premise, we won’t be able to accomplish our important goals. Going from theory to practice takes a long time. We also have to also start in the testing room with the tools we have now.