Autism Interventions from a Parent’s Perspective: Part 1
By Cassandra (Cassey) Wally, a Kadiant Clinical Supervisor
I am a parent of a child with autism and I am also a Board Certified Behavior Analyst (BCBA) working in the Applied Behavior Analysis (ABA) field. I did not begin my journey knowing I was going to become a BCBA or work with children on the spectrum, but it was my experiences, successes, and challenges raising my son Andrew and exploring a number of autism interventions that inspired me to become a Behavior Analyst.
Andrew is my oldest son, born in 1994. When he was born, we thought he was the best baby any new parent could hope for: he slept through the night, was a healthy eater, did not cry, and was not overly needy. We were so grateful to be his parents.
My Son’s Idiosyncrasies
As time went by, Andrew reached all his developmental milestones with the exception of language skills. Andrew babbled and made cooing noises when he was younger, but he wouldn’t make any speech sounds, like “mama” or “dada”. His interests were in specific toys, like cars, balls, and dinosaurs. I thought because he was so interested in his play, it kept him too busy to talk to us. I wasn’t sure what else to make of it.
When he was one and a half years old, I started to notice little things that Andrew would do that were different, especially in his play. He lined up balls from the ball pit around the house and if any one of the balls were out of place, then he would get really upset and cry. He did the same thing for his dinosaurs and cars. I had never seen anything quite like it before. I watched curiously as Andrew would walk back and forth by the venetian blinds in our home, staring at them out of the corner of his eye as he passed. He would do this for what seemed like hours.
Mealtime was another fun experience with his visual stimming (a term I later learned about in my studies in ABA). He would take his fork and fan it in front of his eyes instead of using it to eat with. When Andrew was around 2 years old, I noticed that I could leave and enter the area he was in and he would not care. He never looked for me. At this point, he was not talking, he lined up his toys, engaged in various idiosyncratic behaviors, and rigid play.
Our Journey with Autism Interventions
In 1996, the Vancouver Clinic in Clark County gave us a referral to Providence hospital for an autism screening. The first time we went, the doctor diagnosed him with a language delay, but there was something about that diagnosis that did not make sense: I could understand the language delay, but it did not account for all the other behaviors he engaged in. We then sought a second opinion, at which point the doctor diagnosed him with “Classic Autism” and our journey with autism officially began.
We enrolled Andrew in various autism interventions, including Speech Therapy, Occupational Therapy, and Physical Therapy to begin working on skills to better set up Andrew for success at home and in school. I felt so busy and overwhelmed as a parent because there was so much that he needed, and so many appointments that we had to go to. It was a worthwhile commitment, but one of the hardest things for me was all the driving.
At 4 years old, Andrew said his first word. I can remember him playing at speech therapy and the therapist held up a ball and said, “ball”, and then waited for a few seconds. Moments later, Andrew repeated it back to her. I was so excited to hear his voice and hear what it sounded like when he spoke. The wait and the work we had put in made that moment more than worth it!
His Intelligence and Skills Amazed Us
Andrew constantly amazed us as he grew older, and I loved watching him learn. While he still engaged in vocal stereotypy (repeated sounds/words on a continual basis) and other behaviors, he memorized things that I did not think a 5-year-old could memorize. He saw a map of the United States somewhere and became obsessed with it, so we got one and placed it on his wall in his room. He memorized each state and the color they were as represented on that map. If you asked him where Colorado was, he would tell you the state above it and what was next to it. When passing cars on the road, he would identify the type of car that we passed. He could read and write fluently at 5 years old.
But the Challenges We Faced Were Many
There were so many milestones we witnessed Andrew achieve as he grew, but with those, challenges also followed. At school, Andrew’s diagnosis qualified him for an Individualized Education Plan (IEP), but, to our dismay, his school revoked his IEP, noting that he didn’t need it anymore because he didn’t have any specific educational needs. I was able to contact someone, an advocate, that helped me get his IEP reinstated, and we moved to a different school in Vancouver. Even though he did not meet the criteria for educational support at the time, he needed it for behavioral and social skills.
At 9 years old, Andrew’s diagnosis changed to Asperger’s syndrome and we found out that his IQ at that age was 148. Though we continued with his various autism interventions to support him, teachers told us they weren’t sure how to educate him as he already knew everything taught at his grade level. They did their best to assign extra work, yet when I tried to advocate for him to go into the “challenge” program that was offered at the time, the school said he would need more social support and he wouldn’t be able to qualify. In later grades, Andrew struggled academically, but not because he didn’t know the material; he instead lacked the organizational skills which led him to fall behind in his daily work. Andrew excelled in tests but did not follow through with daily assignments. This followed him throughout high school.
I Worried About Him Fitting In
One of my biggest concerns for Andrew was the bullying that he might experience because he was different. In Little League baseball, the kids in the dugout teased him, and there was a moment when I saw them spit Gatorade on him. When we spoke to the coaches and were told, “they are just being boys”, we promptly pulled Andrew out of his most favorite sport.
Andrew was bullied even more in high school. In one instance, a student who frequently tormented Andrew dumped water all over his backpack in PE. At home, I looked through Andrew’s bag for homework and found all his things wet and destroyed. When I found out what happened, I wrote a letter to the superintendent of the school district and I made sure to send a copy to all the teachers he had as this had been an ongoing issue that the staff had refused to address. That evening, the superintendent called to schedule a meeting. This was the first time I ever felt empowered as a parent within the school system.
His Post-High School Journey
After high school, Andrew tried WSU and community college, but neither were a fit for him. In lieu of pursuing higher education, he instead decided on joining the military. First, he went to the Army recruiters, took the practice ASVAB, and scored a 97/99. When the Army discovered he was diagnosed with autism, they denied him entrance unless he could go through the process of being undiagnosed. Next, he tried the Air Force as he wanted to get into Physics. When he got there, the recruiters for the Air Force were not present, but the recruiters for the Marines were. Once again scoring 97/99 on the ASVAB, he joined the Marines.
Andrew spent 4 years in the Marines and is now back home in Vancouver. Even as an adult, I find that I still coach him on social situations and how to talk to people. When he came home on leave, I would still see him engage in motor stereotypies. He is still learning and adapting every day, and I am so proud of the man he has become. Though his journey is far from over, it is incredibly rewarding for both of us to look back and realize how far he has come.
What Andrew Taught Me
Andrew’s journey and growth through autism interventions and beyond taught me so much about myself that I never would have known had he not been my son. I found a passion for advocacy, for working with individuals on the spectrum, and for Applied Behavior Analysis (ABA). He opened my eyes to a new world, one that helped shaped me into the mother and clinical professional I am today. Andrew is my inspiration, and I am grateful to be a part of his story.