Connor was diagnosed with high functioning autism when he was three years old. He could speak some words, solve most age appropriate puzzles, and had gross motor functioning within normal limits. However, he could not sleep through the night, tolerate simple change without a tantrum, use a toilet, or understand the complexities of the most basic social interaction.
Unexpected or loud noise caused apparent pain. He flapped his hands and was not able to follow simple instructions. He didn’t make eye contact. The words he used mimicked television, or my scripted prompts, but were without practical use in a social world. Connor was more likely to smile at a spinning wheel than a well intentioned human face. Peers were obstacles. His little brother could be stepped on or over, yet never played with. The concrete and material were the fabric of Connor’s universe. Everything else was unwelcome distraction. We were shadows rarely noticed.
My questions for the doctor who diagnosed my son flowed like a spring swelled river. The wait had been a marathon and I craved answers. I worried about Connor’s future, yet needed hope for our emotional survival. Three years without sleep takes a toll. I realized I was inept and unraveling at the seams. Answers with empirical documentation were anticipated with naive optimism. I held out for the pill that could make our situation tolerable. The one that would allow sleep without worry and permit an enjoyable zoo trip for the family minus embarrassment and premature departure. A pill that would act as water after a race across a desert which was much longer than anticipated.
At the time of Connor’s diagnosis, the doctor informed us of a mood stabilizer which had been proven effective in initial clinical trials. The negative side effects and potential benefits were relayed with exaggerated with grisly detail. I preferred to fantasize about alleviating my son’s disability with vitamins and therapy. Pharmaceutical intervention was a last resort. The one which could be utilized by a future self after more noble solutions proved fruitless.
Approximately seven years later I asked for the referral to a psychiatrist. Connor’s aggressive behavior left evidence on my skin. Small clumps of my severed hair hid subversively under the couch. Too many objects in our house were broken. When Maya was two, Connor attacked me as she watched. Moments after, she was unable to recall what happened. Xander began to run from his brother. Spencer always had a stomach ache.
Connor was first prescribed Risperdal. Then Abilify, which was followed by Tenex, Prozac, Geodon, and Ritalin. Dosages were altered and behavioral records kept in spiral bound notebooks. He had an EEG to rule out seizure activity in his brain. Haldol was tried as a last result prior to seeing a psychiatrist in Buffalo who recommended a hot tub as a natural sensory tranquilizer due to lack of more useful suggestion. We watched for signs of tardive dyskinesia worrying over any excessive blinking or involuntary movements. We sought fourth and fifth opinions.
Connor gained weight on medication and slept a few extra hours at night. I called for glass repair less frequently. The pills gave us a few more years of having him home with us, but testosterone and autism often act together like a flame to gasoline. He grew stronger and the prescribed medication was developed for and tested on adults with schizophrenia. The effectiveness of the chemicals on adolescents with autism was a crap-shoot.
He still takes a symphony of brightly colored pills, but the outcome I once dreamed of was a mirage. Without the hope that something existed to help my son and save my family, I might have given up long ago. Dealing with the impossible was tolerable believing rescue was a phone call and prescription away.
Connor is able to live twenty minutes away in an Intermediate Care Facility. He has five boys as housemates who are much like him. He can recently only be physically restrained by staff in an emergency. He no longer breaks windows and injures others rarely while he lives there. Connor attends school on campus. We can take him swimming, to a restaurant, or a grocery store. We visit him every day he doesn’t have school. Connor has his own room at the ICF and considers it his home. He refuses to visit where the rest of us live without him. Connor is happier than he has ever been.
We made our way faltering through the desert. The mirage I envisioned did not exist. I failed to remember the nature of the phenomenon involves deception of the senses. Yet when faltering among barren dunes of uncertainty, hope holds power whether it is concrete or simply illusion.