As April is Autism Awareness/Acceptance Month. You may have been hearing quite a lot about the neurodevelopmental disorder. For all the publicity and public awareness campaigns, for all the autism walks and research studies, much about autism remains yet unknown, such as what causes it? Why, despite all that we now know, are so many children who end up with an autism spectrum disorder diagnosis not identified earlier?
When my son Charlie was diagnosed in July of 1999, the world was all unknowns and not only because we didn’t know why Charlie was autistic, what the best way to teach him was, or why he screamed bloody murder when we tried to get him to stop looking at a spot of red paint on a neighborhood play structure.
What experts, psychologists and too many books and websites told us to expect was all “nots” and “nevers”: Charlie would “never” be able to do X, Y and Z (go to college, get married, cross the street by himself). He would “always” need A and B (everything to be the same, one-on-one support in classrooms) and forever be a toddler trapped in a maturing body.
Thirteen years later, with Charlie (who is moderately to severely autistic) a few weeks shy of turning 15 years old and nearing 6 feet tall (still a bit shorter than my husband, Jim), I think I can say that we’ve moved far beyond those “expert” predictions. It is the case that Charlie is not going to college and that romantic relationships are not likely for him, due to the extent of his intellectual disabilities. But he is no two-year-old in a tall and lanky frame, but a teenager in all regards. He doesn’t lead a typical teenager’s life; he attends a county autism center where his curriculum is focused on learning skills of daily living and vocational training. He will not be able to live on his own. He still has “behavior storms” because he can’t otherwise communicate what he feels and thinks.
Charlie has come a very long way from the woebegone toddler he once was, clinging to a stuffed Barney and not responding to any of the attempts of a room of specialists to interact with him. Here are five things “those in the know” told us he would never do that Charlie, with all the odds against him, has achieved.
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Photo of the author and Charlie around the time he was diagnosed with autism
1. The Dentist
Photo by the author
As the organization Autism Speaks says, “for some children with autism, oral health habits can be challenging.” As a parent, I would say that is a bit of an understatement.
Charlie’s first dentist (in St. Louis) was himself the father of three children with disabilities and recommended that we break up the one appointment into four to get Charlie gradually used to being in the office, then in the dentist chair, then having his teeth examined and then having his teeth actually cleaned. We didn’t get too far with the fourth step then and (after we had moved to New Jersey) when Charlie saw another dentist, who specialized in special needs kids. Charlie sat on my lap and, when he got too big, the dentist recommended placing him in a papoose, basically a full-body restraint that, we were assured, some children loved.
Charlie never liked to have his body confined, so we were wary of the papoose. We tried another pediatric dentist but, after an appointment in which four people held onto Charlie in the chair, we avoided the dentist for a few years and focused on brushing Charlie’s teeth.
After finding yet another dentist with a special needs kids specialization, we worked with Charlie’s home behaviorist to make going to the dentist a positive and successful experience. We made him a picture schedule with photographs of the dentist’s office. We bought dental tools and Charlie’s home therapists taught him to keep his hands down and his mouth open and to get as used as he might to having weird metal and plastic tools put into his mouth.
Charlie now has regular twice-yearly check-ups at the dentist. Some visits have been less successful but, for the past year and a half, Charlie has been able to sit in the chair for at least 20 minutes, long enough to have his teeth examined, cleaned and brushed. He still can’t sit for x-rays and we had those done, and one cavity filled, via surgery at a local hospital.
I don’t know about Charlie ever getting braces. But he brushes his teeth daily and that one cavity was the only one he has had yet.
Photo by the author
As Autism Speaks puts it, the challenges of hair cuts include “sensory issues to anxiety about what will happen during the haircutting process.”
Indeed. Until he was about 7, Charlie, and we, endured lots of tears and near-pokes with the hairdresser’s scissors in our attempts to get his hair cut. At first we took him to hair salons that specialized in cutting children’s hair; they were equipped with videos and cute little cars and merry-go-round ponies to sit on. I brought bubbles and Charlie’s favorite crackers to give him while he sat in Jim’s lap (meaning that Jim got dusted with hair clippings, cracker crumbs and splatted with the occasional bubble). We cajoled and implored Charlie, the haircutter said cheerful things while bending here and there to clip at Charlie’s hair, as much as she could.
Then Jim decided to take Charlie to the local barber.
I thought this was a recipe for disaster. The barber’s shop had nary a child-friendly bit of decor. Plus, there was a tape player at the back of the store and a stack of cassettes, which Charlie was obsessed with pulling the tape out of. The clientale was mostly adult and male and not particularly sympathetic to sniffling, crying, wriggling autistic boys.
Or maybe it was.
Charlie’s first barber, Michael, was a young guy waiting to have his number called to become a fireman. He treated Charlie no differently from any other squirmy boy, requesting that he sit still and get his buzz cut in no-nonsense, often curt language. With Jim standing by, Charlie sat as long as he could and called out “all done.” But Michael kept at it and Charlie always left with his hair cut short and sweet.
Gradually, Charlie was able to have his hair cut (and, now, to get a shave) with any of the barbers in the shop. From time to time, Jim gets his hair cut at the same time, sitting in the chair next to Charlie.
3. Blood Drawing
Needles, glass tubes and more glass, medical equipment of every sort: getting Charlie’s blood drawn has posed more hazards than I cared to contemplate. When he was younger, and smaller, I held him as tight as I could as a nurse at the pediatrician’s office did her best. But she was understandably hesitant; Charlie didn’t just wiggle in my lap, but thrashed around (most likely because he was terrified about the procedure); I was frazzled thruoughout.
After that experience when Charlie was about 6, we didn’t try to have his blood drawn until he was an adolescent, way too big to sit in anyone’s lap. A first experience at a local Lab Corp was successful, perhaps because Charlie just didn’t know what to expect. But the office was confused by the tests Charlie’s doctor had ordered and most of the blood he had sat so patiently to have drawn was discarded.
Later attempts to take Charlie to Lab Corp were fruitless: Charlie could not endure waiting in packed waiting rooms and, the one time he made it through the wait and sat down with a technician, it was quickly clear (he tried to bang his head on the wall) that he remembered what was going to happen and would have none of it. An attempt to have Charlie’s blood drawn at a local hospital created more bad associations about the process: the staff assured me they could handle an autistic child, only to end up having eight people holding onto Charlie while drawing blood.
After a chance conversation with the director of Autism NJ, we sat down with Charlie’s teachers and figured out how to prepare Charlie for a blood draw. (Some more suggestions can be found via Autism Speaks’ blood draw tool kit.) We also divined that it wasn’t so much being stuck with a needle that might irk Charlie as the sensory aspects of the process. So we got him used to having a rubber strip tied around his arm and feeling the cool sensation of an alcohol swab and the poke of the needle.
It happened that Charlie’s neurologist was able to have a lab technician available to draw blood in his office, so that Charlie would not have to wait in a stuffy waiting room. Still, he was clearly wary when the technician wrapped the rubber strip around his arm and she initially said she didn’t think she could do it. But Jim gently held Charlie’s arm and the technician worked quickly and we all didn’t raise much of a fuss (though we all felt anxious). Charlie got his blood drawn successfully.
Unfortunately, the neurologist’s office no longer has its own technician for blood draws; there’s another autism clinic near us that we might try. But now we know, and Charlie knows, that he can do it.
Photo of Charlie (indicating which way he wants to ride his bike) by the author
The team at a child development center in Minneapolis who diagnosed Charlie with autism gave no indication about whether or not he could or would talk. Charlie said four sounds as he was turning a year old and only one (“da”) as he was turning two. He rarely turned around at his name and didn’t know what any of his body parts were. Aside from crying, he had no effective means of communication at the time of his diagnosis (he was just over 2 years old).
After hours and hours, and years and years, of teaching and therapy — primarily Applied Behavior Analysis (ABA), an intense form of behavior therapy, and speech therapy — Charlie can talk. Many autistic persons do not; Charlie now speaks in one to five word utterances though much of his communication isn’t in words but in his humming and other non-verbal utterances, his behavior, how obsessive and anxious he seems.
One of his first speech therapists taught Charlie, still unable to form many of the sounds of words, to use sign language. Doing so showed that he could communicate and that he wanted to communicate and I think this was key in his learning to talk. He very slowly learned to say the various sounds of English and we spent many sessions over many years directing him to round and move his lips and tongue. Charlie was around 10 years old when he was able to say most of the sounds of English. Another thing that helped his articulation was exercise, as this helped strengthen his muscles overall.
As Charlie still has minimal speech, we never outrule anything that might help him. There are a number of augmentative communication devices (such as the Dynavox and, with certain apps, the iPad) available. He learns more every day and, lately, has been trying to articulate ideas that aren’t just “I want this” or “no, I don’t want that,” but something more like “I know we usually go for a walk now but I’m tired so maybe not.” So far, Charlie has preferred to talk which is certainly the fastest means of communication at his disposal (plus, he has two very talkative parents, so he probably feels he has to be sure to get his words in, too.)
These days, I often don’t notice how few words Charlie says because, as far as we’re concerned, he communicates plenty, in speech and otherwise. He can talk and we’ve learned how to understand his “talking,” verbal and non-verbal.
5. Bike Riding
Video by the author
For a host of reasons (including, of necessity, issues of safety), many autistic children do not learn to ride bikes. Difficulties tracking moving objects (cars) and knowing what to do in traffic (just because the light is green doesn’t mean it is safe to go) make biking in the streets (i.e., not in the protected space of a parking lot or park) extremely challenging, especially for individuals who may have trouble coordinating their bodily movements with what they see and their thought processes.
There are a number of programs, some using specially designed bikes, to teach autistic kids to ride. We’ve also seen some parents teach their kids to ride with them on a “bicycle built for two” so the child doesn’t have to navigate traffic on their own.
My parents got Charlie a tricycle for his second birthday. He cried when we had him sit on it. He had no idea what to do with the pedals; at first, he seemed in danger of falling off. We taught him first just to sit on the trike and he stopped crying; Jim would push or pull the trike while I crouched down and held Charlie’s feet on the pedals. One day, a therapist set Charlie and the bike on a very small incline in front of our house, held up one of his favorite things (a colored square of paper) and cheered him on. Eager to get that colored square, Charlie pushed his foot on the pedal, without realizing what he was doing.
As he grew bigger, we switched him to a small bike with training wheels and Jim took matters into his own hands, taking off the training wheels over my worried protestations and teaching Charlie to ride in a local school parking lot. As Jim tells it:
Charlie succeeded in mastering the forward pedaling motion at the expense of backward brake-pedaling; a small price to pay but a challenge that prompted our adoption of the “bicycle rodeo technique” as our best shot at slowing/stopping his two-wheeler. For well over a year when it was time for Charlie’s bike to stop his left shoulder was clasped firmly by dad’s right hand. The rodeo lent a little extra frisson to our regular outings: we grew balanced; in sync; a team. We went on road, off road; he even went off-levee once and found himself hip-deep in the Rahway River covered by bicycle and calling for me in voice of profound conviction.
By age eight Charlie was able to squeeze his newly installed handbrakes: more patient discrete trials (“squeeze brakes”) in the selfsame school parking lot. Soon he was calling out “red stop sign” (and better yet stopping at the sight) and acquiring the grace and poise of a touring master. But then autismland weighed in with a less than gentle series of reminders that saw Charlie—among other antics—shuck his moving bike for a maraud in an unfamiliar yard in an unfamiliar town. On many occasions during that stretch he returned home so visibly distraught, as if to feel cheated by the fleeting joy of freedom in motion. Sometimes he showed no interest at all in his bike or the increasingly spontaneous-improvised rides we shared. I lived for them and was far from ready to willingly relinquish his spirited company.
Jim and Charlie ride bikes pretty much every single day. An average ride is usually 12 to 16 miles. Jim calculates that, in the past two years, they have biked at least 10,000 miles, the equivalent of biking from our house in north-central New Jersey to Mongolia.
One thing I can say after nearly 15 years on our journey in autismland with Charlie.
Never say never.