As the mother of a 21-year-old man with severe Autism, I appreciate the effort made in research, recognition, raising awareness and everything else that the month of April brings. Though I am at a point of acceptance and normalcy in my life with Autism, many families are struggling with a new diagnosis and the hopeful expectation the media seems to offer.
My advice to the well-meaning do-gooders who come together each April on behalf of those living the Autism adventure is dig deeper. Money is raised, awareness is raised, programs and services are started….a lot of effort is made. But what about the day-to-day behind the scenes activities no one thinks about?
Let me list a few from my own experience that may help others to understand why some parents do not celebrate April’s festivities and quite possibly resent the notion that Autism is just about being odd or different.
* During the second year of my son’s life prior to toilet training he would strip off his clothes every day as soon as he had the chance and use the available medium from his diaper to decorate the carpet and walls in his room. While smearing is a fairly normal thing for most toddlers, an Autistic child takes it to a whole other level.
* In his toddler years my son found out how to open every door and lock in our home, even with the child protective covers. He escaped three times while the family slept and once while with the babysitter. He was found in the wash near a huge drain pipe leading under the street one time, at the edge of the main road near our house on another occasion and in our neighbor’s driveway when he ditched the babysitter. In his tenth year he climbed the brick wall in our back yard and went into the neighbor’s house and sat on his couch. When the man asked what he was doing there my son screamed at him and crawled back over the wall.
* My son began self-abuse at age nine when he started banging his head on the wall. We could not find a reason for his episodes but he would hit so hard the drywall would have holes in it. One time he hit so hard his head swelled up until the ridges around his brows and eyes basically disappeared. Fortunately, the doctor at urgent care did not find anything to be concerned about.
Through the years the head banging turned into elbow banging. He would hit his elbows on the walls, again making holes and swelling his elbows to the point that there was no obvious elbow to be seen. He had to have the joint drained with a large needle on several occasions, and has permanent damage to both joints today. He moved from elbows to feet and hands, banging them on objects until they were swollen.
Soon it became punching himself in the face until his eyes were black and blue. He looked like he’d been beat up every day. Sometimes he would smash himself in the mouth until he split his lip. We could hear this when he was doing it, like a fight was going on in the next room.
Last year he switched things up and began hitting himself on the top of his head. That sounded more like someone hitting a piece of wood. Lately it is light tapping with his knuckle on the cheekbone or directly on his eyeball.
* It was years before I could take a shower unless someone was home. Once he was too old to take in with me, I had to plan everything quite strategically. He is my youngest child of four, so I was used to doing this. But no one plans to continue this forever. He has not tried to escape in a long time, but I still cannot trust him enough to allow me to shower.
My son is limited in his verbal communication, no one other than family can understand him. He is in all other ways a typical 21-year-old man, and tries to express himself. We are trying to help him understand why he cannot grab a woman by the face and rub his nose against her forehead. We are trying to teach him how to behave appropriately so he will not be arrested some day.
So while the brilliant savants or those with Asperger’s and mild Autism are most certainly deserving of our acceptance into the mainstream, my son and others like him will always need assistance. They are the ones who “look so normal” but make strange sounds and touch themselves inappropriately. They are the ones who will take food from a strangers plate at a restaurant even though mom is trying to prevent it. My son is the one who is towering over you at 6′ 2″ wanting to make you join him in a rousing round of Baa-Baa Black Sheep because that is his chosen greeting when trying to make a friend.
Where will you be on those nights when my son cannot sleep, it is 11:30 pm and he is punching himself in the face because he is not ready to go to bed but I am exhausted? Where will you be when the police are at the mother’s door ready to arrest her because her son escaped in the night and drowned in the pond and she has been accused of neglect?
Celebrate the success and ability of our kids, but please don’t forget the ones who are on the fringes, those who are tough to talk about, those who cannot be a poster child for your latest “cure,” “therapy,” or “treatment.” Let’s make April’s Autism Awareness something that finds ways to help the large percentage of parents who struggle daily with a severely disabled child who will become a severely disabled adult that society eventually will have to pay attention to.