Gaining Independence: From Cradle to Career With Autism
I adopted my beautiful son Thomas at birth. He was my bundle of joy, the light of my life. In fact, I often remember receiving compliments from complete strangers while standing in line at the grocery store about my gorgeous blonde hair blue-eyed baby. I felt so fortunate to be the mother of such a lovely baby.
Like many with autism spectrum disorder (ASD), my son Thomas had challenges at various stages of his life. Whether they were social difficulties or processing delays, I’m writing this article to share some of his experiences and our forward-thinking steps that prepared him for independence. Eventually, everyone becomes an adult. You too can prepare your child for adulthood.
Infancy went well. He ate well. Slept well, and only really fussed if he was tired or wet. I felt like I was blessed with the easiest baby in the world.
As he entered toddlerhood, however, things began to shift a bit. I began to notice some subtle differences about Thomas. He didn’t seem to speak much and was a selective eater. I noticed that he preferred only crunchy foods like chicken nuggets or crisp French fries. I also began to observe his behavior around other kids his age. He was unengaged. He would rather play alone than with other kids. In fact, I started to notice his preference was often to be by himself.
TIP: I did find one way to connect with Thomas, books! Books captivated him, and so I read to him morning, noon, and night trying to encourage his speech and language. Interestingly, he seemed to love books about Thomas the Tank Engine the most. Thomas was smart, that I knew. In fact, the night before his third birthday, one of his birthday presents was a big chalkboard.
It stood on the floor and was taller than him. I placed it in his bedroom with some chalk and left to finish wrapping more of his birthday gifts. A little later, I poked my head into Thomas’ room and saw him holding a piece of chalk. I quickly looked up at his new chalkboard and was SHOCKED to see what he’d written. He’d written his name across the chalkboard…all by himself. I gasped, and then asked, “Who is Thomas?” And he pointed to himself and giggled. Brilliant!
Although he was bright, he still had delayed speech. I had him evaluated, and he was initially diagnosed with a pervasive developmental disorder (PPD) at age four. By age five he was speaking better. In fact, he’d learned to speak using borrowed text. He’d often sound like Sir Topham Hatt (British accent and all), a character from Thomas the Tank Engine videos.
Once, a perfect stranger heard him speak to me in that accent and asked, “Excuse me, but are you British?” My response was, “No… just him.” (Smile). By age six he was again evaluated and was more accurately diagnosed with Asperger’s syndrome.
Fast forward through elementary school. Thomas attended a regular general education classroom. I felt it was important for Thomas to be in a “general education” classroom (but with assistance), where he would be exposed to “typically developing” students
TIP: Thomas received assistance per his Individualized Education Program (IEP) from a one-on-one aide from kindergarten through fifth grade. It was the same aide for six years. He was a highly intelligent student. His challenge was staying focused, and making social connections. This was the intention of the aide; to keep him on task with his peers, and to help him engage socially during the school day.
I made myself an integral part of his IEP team. I felt it was paramount for him to be educated with his typically developing peers. He was and did this successfully.
Thomas and I agreed that he would attend a school for those affected with autism spectrum disorders. This particular nonpublic school was for those with executive functions issues and was where my son enhanced his social awareness. Thomas benefited from the school’s curriculum that included opportunities for public transportation.
TIP: The school offered weekly group excursions for students and teachers using public transportation. Thomas very much enjoyed these outings and mastered the ability to use public transit, (dealing with money, purchasing bus tickets, scheduling trips, following directions).
Thomas and I chose another nonpublic school setting. This high school offered an extremely rich academic curriculum and encouraged personal growth and independence to those with neurocognitive disabilities such as Asperger’s syndrome. This was a perfect setting for Thomas.
TIP: As part of their program, students were required to research assigned topics and formulate oral presentations based on their findings, in front of the entire student body, staff, and parents. In addition to learning the fundamental techniques of how to research a topic and skillfully present the information using the latest technology, these “personal projects” had tremendous social benefit for Thomas.
In selecting this school, we felt these were areas where Thomas could acquire specific knowledge that would further his independence following high school. And we were right. Public speaking and engaging with his audience became two of his greatest skills. He was prepared.
Thomas decided to start college at the local junior college. That way he could use public transportation (a skill learned in middle school) to and from campus, and live at home for financial savings. He completed all of his general education credits this way.
TIP: There are no IEP’s in college. And, by the way, no parents allowed. It’s in college. This is when your child must advocate for him or herself. I wondered how this was going to affect Thomas; he’d had (and needed) an IEP for all of his early educational years. Thomas had a processing delay. Although he was very bright, he thought he might need more time on certain examinations.
Thomas requested and was granted time and a half for testing for his mathematical examinations. He provided documentation of his diagnosis of Asperger’s syndrome (a clinical evaluation) and these accommodations were provided under the American with Disability Act (ADA) at the university.
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Following the completion of all the general education requirements, Thomas applied and was accepted to the state university. This was an hour from our home. He commuted using public transit for two years. Thomas only had his upper-division courses left to complete and chose to major in Film.
TIP: At the university, I recognized that Thomas was effective in advocating for himself. He informed me that he chose not to inform his instructors of his disability. He felt he wouldn’t require special accommodations. I was surprised but felt he knew himself best. He made the dean’s list. Thomas graduated with his degree in Cinematography with an emphasis in animation. He was 23 years old.
Thomas had attended the Joey Travolta Film Camp as a teenager. That’s where his interest grew in the film industry. He kept in touch with Joey following his graduation from college. Joey offered Thomas an internship with his company called Inclusion Films. The internship-involved film editing, which Thomas had studied at the university. Thomas was thrilled! He moved five hours away from me, rented a room, and lived by himself for eight months until the internship was completed.
TIP: When he was living at home, he’d learned to maintain good self-hygiene, do his laundry, cook basic foods, Uber into town, grocery shop using his own checkbook/debit card, and manage his own money. Still, this was an adjustment period. He used Uber to get to and from work. He did his laundry once a week made his meals (or as I found out later ordered out a lot), and worked well at his job as an editor.
He rarely called me (I called him often), he took the train home to see me only once, Christmas break. I remember being beside myself, thrilled when I called him one evening, but he said he couldn’t talk because he was out bowling with some friends from work. Did he say, friends? GULP!
Now back home, Thomas continues to work part-time for a non-profit company that employs the disabled. He’d worked there part-time during his college years doing data processing. Currently, he is in the process of updating his resume and looking for full-time employment in the film industry, where his true interest still lies.
TIP: However, as a plan B (and everyone should have a plan B), Thomas is taking a night course at the local junior college to learn how to computer code, another one of his interests.
Note: The public school district, per my son’s IEP, paid for both non-public schools
This article was featured in Issue 89 – Solutions for Today and Tomorrow with ASD