Autism, for years, was seen as a separate diagnosis from Asperger’s Syndrome and the other variations of disorder that are now all lumped together as “Autism Spectrum Disorders.” Honestly, I think things were a lot easier when they were different diagnoses, but school districts and insurance companies were using the fact that the other disorders “weren’t really autism” to deny coverage and services, so . . . we get to where we are today. But there’s a big divergence in the course of these shades of the spectrum, and it’s sort of the elephant in the room whenever someone’s talking about autism.
So here’s a little story to demonstrate the different courses that I have personally seen over the two decades that I’ve been in the autism world.
Imagine there’s a big busy train station, crowded with bewildered people and strangely behaving children. The children are all small, and the parents are all in stages of grief and confusion. They thought they were getting on a boat, maybe even to Holland, but instead they were steered into this noisy place and they’re being herded onto three different trains, apparently at random.
The trains all take off from the station, headed in the same direction, north. There are lots of experts wandering through the trains, giving lectures. There are therapists of every stripe and school officials and neurologists and pediatricians. They’re all talking loudly about what the Right Thing To Do is, and the parents are all trying to take notes while dealing with their tantruming children.
There’s all sorts of information streaming across big digital screens inside the train cars– websites, message boards, blogs, Facebook groups, and Auntie Tilda’s personal opinions. Outside, the trains are moving through a dark and spooky-looking forest. Whenever the parents raise their eyes from the screens and ignore the experts for a moment, the woods are there, filled with unknown monsters and terrors.
The parents try their best to listen to the experts, to their children, to the digital information, to make some sense out of all of it. No matter which train they’re on, they all try the same things. Maybe it’s a dietary intervention or a sensory integration exercise or some Applied Behavioral Analysis. All of them work just as hard to find a way to reach their children and make a difference in their lives.
And, suddenly, one train track diverges from the path through the forest. The children inside are around seven or eight years old and out of nowhere, it seems, the train is moving out of the trees and into sunnier fields and gently rolling hills. The parents on this train are grateful, thankful, and happy . . . but some of them get some odd ideas. They start thinking that they did something to MAKE the train turn east. After all, their child started getting better right after they tried this, or that, or the other. It must have been the diet or the therapy or the hours they spent patiently sitting through all the experts. The train turned! They feel like they saved the day.
The children on that lucky train can almost be mistaken for “neurologically typical” children at times. They still have quirks– sensory problems and issues with sociability are often lifelong– but they can go to school without an aide and the parents can start worrying about their grades and whether or not they’ll get into college. The parents feel like they dodged a bullet and they’re often very positive about how this whole experience has made them better, stronger, wiser, etc. They say things about how ASD is just a “difference” not a “disorder” . . . and for their kids, they’re right.
The other two trains keep rattling along through the forest. The terrain is getting rougher. Dark mountains loom in the distance. But one train starts veering ever so slightly west. The trees change, more straight pines and less of those twisty, scary mystery trees. There are some deep canyons and some rocky hills, but there’s sunlight ahead and things don’t look all that bad. The children on the train are getting older, into their teens, but they’re talking, they’re able to mostly be mainstreamed in school.
The parents on this train can finally have a little hope. Sure, the track runs through lands that are prone to thunderstorms and it can still be pretty scary, but their kids (who would have been called Asperger’s in the old days) are definitely capable of brighter things. They can go to prom, drive a car, hold down a job. They’ll always be weird, they’ll struggle with fitting in and feeling normal, and some of them can be dependent on their parents for the rest of their lives, but they can get along. It’s rough, but it’s pretty country. Their parents still struggle with feeling overwhelmed at times, and they worry about their odd little passengers, but sometimes they can look out of the windows and feel pretty good about their lives.
The people on the third train are starting to worry. The land ahead looks bleak, dark, and rocky. It’s getting colder, and there’s a howling wind that keeps whistling through the cracks in the windows. The experts stop talking so much and start disappearing. The people that replace them seem a little less qualified, less highly paid, and there are more bureaucrats and minimum-wage aides than neurologists and occupational therapists. The digital information isn’t hopeful anymore, either, and all the posts and blogs and messages about parents worrying about their three year olds seem hopelessly out of date.
What they wouldn’t give to be back at that station! Their little passengers aren’t so little anymore, and the parents start to have trouble dealing with them. A tantruming twenty year old is a different problem than a tantruming three year old, and the parents aren’t as young as they used to be, either. There’s so many more frightening problems to deal with, too– aggression, inappropriate sexuality, failure to learn toileting and horrible toileting problems, obsessions that send the passengers into wild-eyed rampages, property destruction, pica, and the ever-present fear that the passengers may just decamp right into the path of a car or plunge themselves into a river or pond.
The parents are getting older and they know things are only going to get harder for them physically. They’ve probably injured a back or a knee by now, trying to control a raging teen or twentysomething. They have lots of time to look out the windows of the train, in between cleaning up after, medicating, and monitoring their child. What they see is bleak. The train is getting closer to the pole and the trees start to die off. All that’s left are the scrubby little plants that can handle the cold and the absence of light.
Sometimes, the parents will hire someone else to sit for a while with their passenger. There’s a shifting parade of aides and assistants and respite workers. There’s a possibility that their other children may get brought onto the train to take a turn sitting with the passenger, but that’s a dreadful thought for the parents. Who wants to leave a trip like this as a legacy to one’s children? Some parents do desperate things as the sky starts to grow dark. Some of them will do the worst and push their passenger off the train. Some will leap off the train themselves. Many of those will take their child with them, jumping out to their eternal fate. It’s a sad end, but not as frightening as the possibility that a parent may be pushed off by their own passenger.
A few parents may keep their wits about them and stay relatively cheerful, but sometimes it seems like whistling in the dark. The train tracks stretch out into the distance but there are no stops visible. The passengers often remain mute, self-destructive, violent, incontinent, and unable to care for themselves. And there’s the digital screen, filled with the chipper parents from the first train, saying “if you just do A, B, and C, you’ll CURE your child’s autism!” But the parents on the third train did those things, you see. They were just on a different train entirely, on a different route, with a different destination.
I hope I don’t come off as too depressing with this little story, but it’s a true story, as far as I know. Needless to say, I’m riding that third train north. I wish I’d been on one of the other trains. On this train, you don’t find yourself saying cheerful things about how autism is special, or their difference is a unique blessing, or how you wouldn’t change your child for the world. People on my train know that we’d do damn near anything to have never been on this train in the first place.
And yet we keep riding. And to the parents on the other two trains, understand– we don’t hate you, but we do wish you understood how different our paths really are. Before you post another positive meme or adorn everything with puzzle pieces, spare a thought for the mother who is being slammed into a wall by her 6′ tall autistic son when he’s mad that his chicken nuggets are all gone, or for the parent who is spending their Saturday night scrubbing feces off the floors and walls, once again, or for the dad who is looking at his checking account and retirement account with weariness and grief, because there’s no earthly way he can afford to retire, ever.
We’re still on this train. And your train is similar and we know where you started out from . . . and we respect that you made that journey. Just remember that the “spectrum” of visible light includes everything from red to blue, and they don’t have very much in common in the end. It just allows us to see.