As a parent with an autistic child, I’ve heard the saying: “If you’ve met one person with autism, you’ve met ONE person with autism.” This statement, attributed to Dr. Stephen Shore, is completely true. Imagine an alien observing just one of us and then going back to outer space to report that the human population enjoys running and eating ice cream but prefers to not go out after dark. Well…that’s just silly. We are a complex species with a wide range of varying traits.
At the age of 3, my son Brady was placed into a preschool autism classroom where he received intensive ABA therapy for 4 hours a day. At the time we didn’t have an autism diagnosis, but an organization called Child Find evaluated our son for developmental delays, found him eligible and as such he was entitled to receive special education services for free during his preschool years. The word ‘autism’ was only a faint whisper in my ears since I had not yet sought out, nor had anyone suggested I should seek, a formal medical diagnosis. However, he was categorized as ‘developmentally delayed’ and placed in a very restrictive preschool environment – a classroom where teachers freely used the word ‘autistic’ and ‘maladaptive behaviors’ as if those were just casual words to describe all 6 of the kids who were members of this unusually quirky club. I was incredibly grateful for the hands-on behavioral therapy Brady was receiving every day in that autism classroom but wasn’t so sure of the specific category under the developmentally delayed realm my son would eventually fall into. ADHD? SPD? ASD? Anxiety?
During his preschool years, I received a daily chart and lots of teacher notes about the happenings of the day and how Brady responded. The scribbled handwritten notes from Ms. Moore looked like this:
“Inedibles in the mouth again during math time. We redirected his attention 5 times and rewarded him when he complied.”
“Used his words to get his needs met 4 times and when prompted for eye contact, he complied 2 out of 3 times! A huge improvement from last month!”
“HIGHLY sensory seeking behaviors in the morning but, with heavy positive reinforcement, Brady was able to turn it all around after lunch.”
“Stimming behaviors during recess. Let’s talk more about it in person.”
This kind of detailed daily feedback helped me understand my son more fully and to gradually absorb what autism might look like for a given child. I communicated weekly with his teacher asking such questions like: “Why does Brady chew on his sleeve? Why does he continually pick scabs off his legs? What do you mean by ‘seeking behaviors’ and ‘overstimulation’?” I desperately wanted to know how to help my son in our home environment and to do that I needed to know the antecedents (precursors) to Brady’s poor behaviors and how the autism teachers were intervening to stop (or lessen) them over time. Essentially, I needed to understand the essence of how ABA therapy works so I could successfully apply it in any behavioral situation with Brady.
When I sought out a medical diagnosis when Brady was nearly 5, the developmental pediatrician categorized him as having ‘severe ADHD with sensory processing disorder’ but not as being ‘autistic.’ I was somewhat surprised by this diagnosis. The school assured me that all resources he needed under the special education umbrella would be made available to him, and indeed they were. It wasn’t until Brady was 7 years old, that he was officially diagnosed as autistic. To me, it was a relief. Brady was still Brady and I had known in my heart for quite some time that Brady presented differently than just an ADHD child. However, to others, it was a hard diagnosis to swallow. My mother-in-law was one of those people.
Grandma always knew how to connect with Brady.
It can be very difficult to explain to someone why your child is autistic. After his diagnosis, my mouth would say things like: “Brady doesn’t like looking right into your eyes when he’s talking. He doesn’t seem to care if he has anyone to play with when he is doing something very intensely. He doesn’t pick up on the social cues that other children his age would naturally take in. His senses are heightened, and he can get overstimulated easily so I have to always be mindful of where I take him and the effect it might have on his behavior.”
My mother-in-law, who adored Brady with every piece of her soul, said to me: “Hmmm… I thought autism meant that the child doesn’t want anyone to touch them. Brady loves it when he’s touched.” She was right. Brady loved to be squeezed, to be hugged with firmness, to be tickled nonstop, and to have his head caressed with lots of pressure. I explained to her that autism is so much more diverse than that old, outdated stereotype of a child rocking by themselves in the corner of a room who seems to be in their own world, not desiring communication or touch. Autism has several broad components to it and the best way to help a child with autism is to really LEARN about the disorder – to study the behaviors, reactions and triggers (antecedents) of that child.
My mother-in-law spent weeks at a time around Brady whenever she visited us from Los Angeles. She would never deny that he was very different. She would come out for 2-week periods, several times a year. We went to parks, playgrounds, grocery stores, and took daily neighborhood walks. She saw all sides of Brady, and she loved him unconditionally. She just didn’t see his autism because she didn’t really understand the meaning of the word autism and how it applied to Brady. Truthfully, I didn’t know what autism meant before learning the various components of the disorder through Brady’s teachers and therapists over the course of his preschool years.
What does autism right now look like for Brady?
Repetitive Behaviors
- Brady will head bang on soft furniture (bed, couch) or on a sibling’s back. I believe he does this for different reasons at different times. Sometimes he is seeking a sensory stimulation and the input he receives from this is pleasurable to his system. Other times, I can tell he is trying to regulate his emotions. Intense excitement can lead to a moment of head banging, but so can feeling despair or being upset.
- Brady will ask the same question(s) repeatedly. I call this perseverating on a topic. Lately, Brady is asking me questions about boa constrictors and pythons. He will ask the same few questions again, several times a day. “What did Mommy say about boa constrictors this morning when you asked that question?” I do my best to answer a question just once, clearly and concisely. Should he ask again, I try to get him to tell me the answer, but if he cannot do that, I steer the conversation to a related topic to expand his conversation skills.
Social and Communication Skills
- Brady often chooses to play alone in our backyard and can be very inflexible with his creative play. When siblings try to initiate collaborative play with him, they witness how such play is possible, but it must be on Brady’s terms. For example, he gets easily upset if others do not embrace his idea of how to put together a fort. He has a difficult time adapting to the opinions and advice of others. Brady has receptive moments though, and his siblings continue to help him be more mentally flexible during play, but they also now recognize the times when he cannot adapt. He can get upset by seemingly minor hiccups to our routine; changes can bring about overwhelming anxiety.
- Brady doesn’t easily pick up on others’ social cues such as their physical cues (grumpy face with arms crossed). I must explain to him that Cedric was mad because of (fill in the blank), or that Alexis is hurt because you said (fill in the blank) to her. During his time in preschool, the aides used a chart with about ten animated faces revealing basic emotions (happy, sad, frustrated, angry, surprised) and they used it as a tool to help Brady better understand and label his own emotions as well as those of his classmates. Many autistic children struggle to pick up on other’s emotions. The following conversation is a real example of how Brady has difficulty understanding emotions beyond happy, sad, or mad:
Brady last week: “Mom, am I embarrassed right now?”
Me: “I don’t know. Why do you think you might be embarrassed?”
Brady: “I cannot find my pencil.”
Me: “I don’t think you are embarrassed. You might be surprised that it is missing. What do you think?”
Brady: “I think I’m getting frustrated that I have to get another one.”
How do you explain the word embarrassed to a child? We do so by giving him examples such as: you would be embarrassed if you went to school without clothes, but it’s unclear how much he can take in the subtle meaning of certain words, particularly because Brady is rarely embarrassed by anything. Most children naturally pick up on the meaning of certain words from the context of a situation but with Brady, his brain doesn’t easily absorb the implied definitions of such abstract words.
Fixations/Obsessive Interests (Monotropic Mindset)
Brady fixates on a topic or a task for weeks, sometimes even months. He has been this way since he was two years old. For months, he couldn’t make enough bird nests to put up in the trees in our side yard. He’d gather grass clippings and small twigs all afternoon on sunny days. He’d carefully mold together impressive little birds’ nests using the deep-down-tough soil he had spent hours digging up.
One day, he stopped building nests and his new fixation became bamboo. He checked out books on pandas and stared at the bamboo pictures. Then he started digging up bamboo rods whenever I’d allow it. Eventually, he built a tepee with the ten or so bamboo rods he brought into our yard.
Brady will bring up the same movie scene in conversation over and over. Again, I try to expand the conversation by making connections to other topics. It can be very challenging (even maddening) when he continues to circle back to his original thought “Yes, but wasn’t it funny Mom when Ralph said he was going to wreck it?” Brady has difficulty switching to different topics of conversation.
Sensory Processing Issues
- Brady is very affected by his senses. He doesn’t like bright lights. His ears are overly sensitive to sounds that others can easily ignore (e.g. the humming of a light). He hates crowded areas too. I must assess where we are going and if I think he can tolerate the noise and number of people present. His eyes water and he will say something like: “It’s too loud in here for me. I can’t be in here, Mom.” Certain smells bother him as well. The tough part is that I can’t always predict what will cause him to feel overloaded by his senses.
- Brady loves to swing, jump from heights, and hang upside down. He tells me it feels good to climb and then jump down. I’ve learned from occupational therapists who work with kids on the spectrum that his body craves this stimulating input. This past summer at the age of 8, Brady got on a ride (a.k.a. the SuperFlip) that takes him up to 20 feet in the air (at the very top) and spins him around upside down, all while doing big loops. It is rated 5 stars for thrill-seekers and Brady just met the height requirement last summer. Brady’s older sister and brother had absolutely no desire to ever get on that ride.
I overheard a conversation Brady had with an adult woman in line with him to get on the SuperFlip:
Lady: “You’re getting on this ride alone? I’m so scared!!”
Brady: “It isn’t scary. It’s like a lovely bike ride.”
A lovely bike ride? At the time, Brady’s description of how the ride felt to him made me laugh, but it really allowed me to understand how Brady’s brain is truly wired differently.
Brady also has poor fine motor skills, which affect his ability to write as effectively as other kids his age. Writing is a non-preferred activity and has always been. However, he’s an amazing artist and lately has been using a multitude of bright colors to create self-portraits.
Self portrait by Brady
These are the main ways that autism presents itself in Brady. Autism is not a static diagnosis though. I have seen firsthand how early intervention aided Brady’s expressive language skills and helped him understand how to better cope with the intensity of some of his autism components, such as the emotional regulation. I have learned that autism spectrum disorder (ASD) is also associated with amplified emotional responses and poor emotional control. This is an area he has made progress in, but may always be a struggle for him to fully control.
Autism is a complicated disorder and the best way to explain it is to learn more about what the autism spectrum looks like under each of the larger components noted below.
“All autistic people are affected in one way or another in most or all of these boxes – a rainbow of traits……Each autistic person is affected strongly enough in one or more categories for it to be disabling in some way. But each person’s dominant colour palette may look different.” – excerpt from “It’s a Spectrum” Doesn’t Mean What You Think by C.L. Lynch
This is exactly why two autistic children are unlikely to be affected in the same manner across all categories and why it is important to understand what your child’s dominant colour palette looks like. This level of awareness leads to the best intervention strategies as well as crucial supports that will significantly improve a child’s quality of life now and in the years to come.
Grandma and Brady digging at the beach.
Awesome post, Rebecca! Your memories and ABA language from preschool bring back so many memories (and descriptor words that only seem to exist in the special needs community). It’s funny, too, because I’m starting to think that the spectrum is larger than we realize. As you know, Tucker’s been diagnosed as not having autism (although opposite of your story, the dev ped thought he might at age three and then later said “no.), but so many of the behaviors are similar. Tucker’s almost 10 years old now, and he must ask me AT LEAST twice a week “Why is Nugget so cute?” (the dog) I answer differently each time, or, like you, say “We’ve talked about this before. Tell me why you’re so cute” (or why I’m so cute, or why the mountains are so pretty or whatever). Brady’s an incredible artist!
Also LOL to the SuperFlip being a “lovely bike ride.” At Disney a few weeks ago, Tucker’s favorite was the IncrediCoaster and I could NOT stand it, it was so jiggly and fast and ugh. My eyes were closed the entire time.
This is such a great article, Rebecca — Fun to see Dee Dee too in the photos — Well done — again!
I loved reading this!