Autism Awareness day is every day for families
This past Wednesday, April 2, was World Autism Awareness Day. As I write this, I’ve been bombarded all week with stories about the disorder, the medical facts behind it, the toll it takes on families financially and emotionally, and the staggering statistic that with 1 in 150 children — 1 in 95 boys — now being diagnosed with it, autism is more common in children today than cancer, diabetes and AIDS combined. Combined!
My first reaction to all of this media coverage is elation. How far we’ve come in the five years since autism first made its direct impact on my life, with the diagnosis of my godson at just 18 months of age as likely autistic.
The image of autism for most people back then was from the movie “Rain Man,” with its adult autistic savant, or perhaps the little boy who turned out in the final episode of the TV show “St. Elsewhere” to have had the entire series set inside his own internal world, lost in the imaginings he saw inside a snow globe.
This week, we’ve seen a lot more of the real, detailed picture of autism, with families across the country, in all financial spectrums, of all races and religions, dealing with the impacts of the disorder on their children, themselves and their lives.
I’m glad so many of you are seeing these stories this week, but I think the bottom line for Autism Awareness Day 2008, for me, is that one day per year of awareness is never enough for a life-altering disorder that affects so many children and so many families. Indeed, for these families — including my own — every day is Autism Awareness Day.
For us, it starts at 6:30 a.m. most mornings, when James’ mother wakes him up to get ready for school at the Sussex Consortium.
James, who recently turned 6, now heads straight for the bathroom when he gets up, does his business and heads into his mother’s room, where he gets dressed. After more than three years of work on potty-training, we’re nearly out of the training-pants phase, thankfully, with only nighttime accidents to worry about.
We’re also, very much thankfully, out of the “orange shirt” phase, in which James emphatically insisted that he would wear an orange shirt every day for about two months. He had two orange shirts at the time. We did a lot of laundry.
We added two more shirts to the rotation before his teachers at the Consortium suggested a trick I’d seen recommended for toddlers: give him a choice of two shirts, either or neither of which could be orange. Whatever he picked, he got, even if neither of the options was orange.
There were still mornings when the lack of an orange shirt netted us a temper tantrum, “Orange shirt!” yelled at the top of his lungs, repeatedly, to where we hoped the neighbors weren’t being disturbed at that hour of the morning.
But these days, most days, James gets dressed without complaint. Score one for normality.
James spends most of the next 10 to 20 minutes waiting for his bus, shifting from side to side, one foot to the other, in a sort of dance that he’s done as long as I can remember.
It’s notable now for me that this kind of movement is typical of children — and some adults — who have autism-spectrum disorders. The rhythmic repetition, and other behaviors, such as hitting themselves, spinning objects, etc., are commonly known as “stimming” — short for self-stimulatory behavior.
According to Stephen M. Edelson of the Center for the Study of Autism in Salem, Ore., such behaviors often include visual stimulation (staring at lights, repetitive blinking, moving fingers in front of the eyes, hand-flapping); auditory stimulation (tapping ears, snapping fingers, making vocal sounds); tactile stimulation (rubbing the skin with one’s hands or with another object, scratching); vestibular stimulation (rocking front to back or rocking side-to-side, as James does); taste stimulation (placing body parts or objects in one’s mouth — explaining why it was so hard to get James to stop sucking his fingers — or licking objects) and smell stimulation (such as smelling objects, sniffing people).
Edelson notes that the jury is still out on why autistic people engage in these kinds of behaviors. “One set of theories suggests that these behaviors provide the person with sensory stimulation (i.e., the person’s sense is hyposensitive),” he writes. “Due to some dysfunctional system in the brain or periphery, the body craves stimulation; and thus, the person engages in these behaviors to excite or arouse the nervous system.”
Another set of theories states that these behaviors are exhibited to calm a person (i.e., the person’s sense is hypersensitive). “That is, the environment is too stimulating and the person is in a state of sensory-overload,” he writes. “As a result, the individual engages in these behaviors to block-out the over-stimulating environment; and his/her attention becomes focused inwardly.”
Stimming behaviors are generally considered to be a barrier in educational activities, so it’s no wonder that autistic children – who often rely on them — can fall behind in a traditional educational system.
That’s been the saving grace for James, I think. He goes to school in a place where they are known for being on the cutting edge of education and therapy for autistic children, at the Consortium in Lewes. He doesn’t even mind the bus ride from Ocean View.
But even his school life poses problems that are more difficult than the average child. James’ sister is an enthusiastic 7-year-old and, well, a little clumsy. She sometimes comes home from school with a bump on her head from the playground. But never has she managed to bang her head on a doorway to where she required stitches, simply from being turned mentally inward when walking down the hall to breakfast in the cafeteria.
That was another opportunity for total pandemonium that went better than expected, sort of. James went to the nearby emergency room, had four adults hold him down (kicking and screaming) while the doctor did the stitches, and promptly forgot about the whole thing until the stitches had to come out. I was more surprised that he didn’t pull them back out on his own and that he allowed them to do it in the first place.
These days, James is also visiting other students at the Lewes campus — children in the “normal” classes. The idea is that non-autistic children provide good models for autistic children to imitate, with their speech, interactive play and behavior. I’m not sure we’ve seen the full impact of this yet, but I’ve heard many success stories about behavior modeling from around the country.
James is also learning life-skills at the Consortium, such as taking a shower and dressing himself — a big step for a boy who screamed bloody murder a year ago every time we rinsed his hair in the bath.
And while he screams “All done!” at me when I dare ask him his name or how old he is – a litany for me with all three kids in my house, in case they were to get lost – James now uses near-full and full sentences sometimes to talk to us. He makes requests out of the blue and asks for confirmation of his own internal dialogue. “Egg is oval,” he suggests. Yes, it is. “Money is circle.” You got it!
James can even help out with simple tasks at home, bringing a requested object to his mother, getting his cup for a refill, handing a toy to my 2-year-old son.
Now, this is a long way away from James having a job, paying his own bills, cooking his own meals and living on his own or even in a group home.
And that, I think, remains the big and concerning question for us: James’ future — particularly as James and his family are about to move to Texas, where there is no Consortium and where he will have not only to start over with a schooling environment but deal with major changes to the one thing most autistic people count on: routine.
For James, routine includes a very narrow selection of acceptable foods, such as PopTarts, applesauce, chicken fingers, cookies, mixed fruit, Goldfish crackers, Pringles, Cheez-Its and peanut butter. He’ll sniff other foods, if offered, as if to see if they’re edible on his scale of such things, but they’re generally either abandoned or rejected outright. “Don’t want!” he insists.
Until about a year ago, that included nearly all kinds of candy. We accepted that James had no sweet-tooth. Then he added red Swedish gummy fish to his list of rewards at school. Then Halloween arrived, and he picked at some of the offerings. These days, with Easter just past, he’s big on “Chocolate!” — especially if it’s round.
And I did, indeed, purchase a package of plastic poker chips last week, just for James. No, he’s no card-counting savant. He just likes to spin circular objects, and after losing a dozen circular toy parts and container lids, I figured a few dozen poker chips were the perfect solution.
Granted, he took a liking to his sister’s Leapster video game toy late last week and hasn’t touched the chips since. We did, however, have to go buy him a Leapster of his own, as he insisted with just as much ferventness as he did his demand for the orange shirt that he would play “Letterpiller.”
It rarely pays to thwart an autistic child when they’re set on something. And James somehow managed a perfect score at the game the other day, proving he’s learned his letters and numbers better than we’d realized. That’s far better than another temper tantrum.
For many families with autistic children, the next temper tantrum, meltdown or scene is what you dread. James has gotten better about screaming in public, but it’s a flashback to a typical 2-year-old when he’s mad — just bigger and louder. I think most of that will go away with time, as he grows up and starts to, hopefully, catch up with his peers in development.
Beyond what kind of life James will lead in Texas, and what his life will be like when he’s 18 or 30, my biggest concern is financial. I don’t have to pay those bills. And the state is kind enough to take care of the thousands the Consortium would normally cost James’ family.
But I see the impact of things like his diet on them, when the food stamps they’re entitled to run short if they add Pediasure nutritional supplements to help keep his weight up. Like many autistic children, he’s on the low end of the healthy range for his age, simply because he often isn’t interested in eating and won’t eat a variety of foods.
James is not one of the autistic children whose parents have tried to eliminate things like gluten and preservatives and artificial colors from his diet, in hopes of reducing or eliminating his symptoms. I sometimes wonder if it would help him. I don’t think he’d accept the loss of his Goldfish very easily. But I also don’t want to imagine how much it would cost to feed him — and likely the whole family — with that special diet on what an average family makes.
The most recent estimate I heard this week of total lifetime cost of a single autistic child was in excess of $3 million. That’s health care, therapy, outside caregivers, medications, loss of income to the child and caregivers, special schooling, dietary needs, and on and on…
And very little, if any, of it is covered by insurance companies. Indeed, state aid is one of the more generous programs available for families with an autistic child. It covers most basic needs and, here, the cost of the Consortium, though it does not offer assistance for special diets.
Private insurers don’t generally cover most therapies for autism — and only limited amounts when they do. They don’t cover special diets, transportation costs to and from therapy and private schools, respite care when parents must leave their autistic child for other events or even just a night off…
These are all things that the parents of autistic children are paying for, every day. They’re also skimping on time with their other children and with each other, leading to an astonishing 80 percent failure rate for marriages with an autistic child.
I’ve said it before, and I’ll likely say it again, but I think the biggest thing a person can do for a family with an autistic child is offer to help out. Even if the family prefers to stay at home with that child, the notion that you really could call somebody up and get an hour or four out of the house is priceless.
The Consortium even has a great respite program that allows children to be cared for overnight or for a few hours, by people experienced with autistic children, to give parents a break and siblings a chance to get out with mom and dad.
I know of parents who lock their doors with keyed locks to ensure their older autistic child doesn’t escape and potentially get lost or wander into a busy street or body of water.
At least for the moment, our biggest daily worry is whether James will take instructions not to draw on the wall with his crayons too literally and decorate existing art hung on the wall or, as he did recently, use peanut butter as his medium of choice.
All kids do these things, but as families of autistic children know, the autistic kids tend to do them exponentially more often and for a much longer period in their lives. The end result is years of daily worries, added to lifelong concerns and interminable stress.
One concern I heard again and again this week from parents of autistic children was about what would happen to their child if something happened to them.
The well-off already drain their bank accounts to pay for therapy and schools. Will they have enough left to ensure their adult child will be taken care of into old age? Those who might have comfortably purchased a nice home often find themselves forced to sell their house after taking out loans to build a safe play area, and paying for therapy and other special needs.
What happens to the adult child of the family that had to rely upon state aid for therapy and had to struggle to make rent payments? We can hope his siblings became NBA All-Stars or best-selling authors, but many of these kids stand a good chance of ending up in group homes and state facilities as they grow older.
That, if for no other reason, is why this worldwide medical crisis — and it can be considered nothing else, in the context of the cost for families and society as the numbers of children with autism continues to boom — must be dealt with at the top of the list of the nation’s healthcare priorities.
Finding the cause, or causes, for autism, finding the treatments and therapies that prevent it from getting worse and even garner improvements — restoring children to families who had watched them slip away — is absolutely vital if we are not to face an epidemic that could someday literally touch every person in this nation, whether it is them, their child or sibling, a grandchild, friend’s child, co-worker’s child or even the person who might have, one day, become a co-worker, a mentor or a world leader.
When I look in James’ bright blue eyes, sometimes I wonder if he would have been a brilliant engineer, a groundbreaking scientist, a gifted musician, a doting father… And sometimes I wonder if he still might be. He’s come so far. And he still has so far to go.
In 15 years, will they have found a cure? Will the work that we’re doing now mean that he can lead a normal life, go to college, have a job and a family of his own? I don’t think anyone who knows James hopes for anything less for him.
But I do think we expect to give our all to make it so: to ensure that the most that can be done to find a cure is done, to work with him daily to help him come back outside himself and develop the skills a kid his age should have and to weather those daily stresses and little storms that can’t be any more trying for us than his life is for him.
And despite it all, James remains one of the sunniest, happiest children I know. It’s a reminder never to take your own life — every moment of it — for granted and to enjoy the blessings of every child, even if he paints with peanut butter.
World Autism Awareness Day may come just once a year, but for a growing number of people, it’s just one more day of hopes for the future.