Originally published on Various Shades of Blonde Momsense on May 15, 2013. Written by Cristina M. Miller, CP APMP, ReadActively.org.
Autism is a genetic spectrum disorder that affects 1 in 59 individuals. When I got divorced and gave up residential custody of my son it was a spectrum disorder that affected 1 in 160 individuals and there was still a lot of hew and cry about its causes. Mercury was considered a huge culprit for awhile and lots of parents didn’t want to get their kid vaccinated. Today we know autism is genetic. Literally, the function of the parietal lobe of the brain is different in autistic individuals.
Autism is more prevalent in boys than girls. It is characterized by delays in speech and language. There is no cure, but there are plenty of treatment options, ranging from an Individualized Education Plan (IEP) and Applied Behavioral Analysis (ABA) through the school to drug therapies to control the outward manifestations such as temperament. There are also many experimental therapies, such as eliminating wheat and gluten from the diet.
Autistic individuals are unable to filter common stimuli. They are acutely aware of everything in their environment at once. The nearest neurotypical example I have ever been able to come up with for this is driving. When you are behind the wheel of a car you are aware of:
- The road conditions
- Your tires on the road
- Your speed
- The music – or audiobook – in your CD player
- The other passengers
- The minute movements the steering wheel is making
- The other drivers on the road
- The speed limit
- The prospect of police on the road
- Other potential hazards such as animals, pedestrians, etc.
- What is happening on your right side
- What is happening on your left side
- What is behind you
- The spacial relationships between everyone around you
- The car’s heat gauge
- The amount of gas in your car
- If you drive an ancientmobile, every ping and noise it is making
Daunting, right? So’s autism. Except, with a car, you are only driving for a certain length of time: an hour, three hours, maybe as many as 18 if you’re trying to drive straight through to something. Eventually, however, you will get a break.
You don’t get a break with Autism.
That’s what autism is and what it’s like for the affected.
Here’s what it’s like for the parent.
I’ve spent a fair amount of time reading about autism and talking to autie parents like myself. We all seem to agree that autism starts to show itself rather sneakily and often in the guise of the “Terrible Two’s.” Many of the parents I have met, myself included, recount a time prior to the sunny young age of two when their child seemed absolutely neurotypical. Then, magically, around the age of 18 months or so, things started to change.
Small changes at first. You notice other kids talking up a storm while your child is still speaking in the same half sentences of a toddler. Your child is playing outside the circle of other kids. Your child is maybe throwing things and not reacting when another child is hurt. Your child is galloping when the others are running.
You don’t realize what it is at first. You imagine – and your pediatrician will tell you – all children develop at different rates. They speak at different times. They learn to socialize at different times. Your child is fine. They’re still within the parameters of normal development. They’re just moving a bit slowly.
You look at your best girlfriend’s daughter, who appears to be constantly giving your girlfriend a run for her money, and imagine that’s what it is. You think maybe you’ve just got a rebellious child. Your kid is just giving you a run for your money. I picked up a book called “Raising Your Spirited Child” initially, never thinking at first that my perfect – and seemingly perfectly neurotypical – 2.5 year old could be anything other than that: a spirited child testing his mom’s mettle as part of the transition from toddler to preschooler.
But then the other kids inch ahead. The other kids start making friends and yours is still lining up trains outside the rest of the group. The other kids are articulating exactly what they want and yours is barely speaking. Your girlfriend’s daughter grows out of that rebellious phase and your son does not.
Slowly, it starts to sink in.
- You don’t have a child who is developing at their own pace.
- You don’t have a spirited child.
- You have an autistic spectrum child.
You claw from realization to acknowledgement and acceptance as if driving through a thick, never ending, spectacularly beautiful snowstorm.
First, there is determination. You will drive out of this storm. This isn’t a real storm. This is a light snowfall. Nope, you decide. My child is not on the spectrum. This is just a phase. He’ll outgrow this. To prove this, you take your child to a psychologist, to the school, to be evaluated by anyone who will evaluate him.
Then, when all of those evaluations come back and say the same thing, there is determination.You are going to drive through this storm. You’ve driven in snow before. This will be a piece of cake. Your child is on the spectrum. So what? You love them just as much. No, you love them more because they are on the spectrum. You are going to make sure they are the most advanced autistic spectrum child who ever lived. They are a savant, or they will be (in reality, an autistic savant is very different from someone on the autistic spectrum). You chew through IEP teams, making sure that your amazing, perfect, autistic child who, by the way, is better than every other neurotypical kid, has everything they need to excel.
Next comes guilt. What were you thinking driving through this snow storm? This is a blizzard. What weather report remotely indicated this was coming? You review every moment of your pregnancy back to three months before conception. You mentally review your diet. You consider the one sip of one glass of wine you had in the trimester before you saw those two pink lines on that pregnancy test. You think about the peanut butter M&Ms you ate in your second trimester. You consider the fight you had with your mom while nine months pregnant. You think about the fights you had with your husband when you were in full on post partum depression and he just didn’t get it. Did that cause it? This child came from you, so surely you did something right?
No, you didn’t. Autism is genetic. You couldn’t have prevented this even if you had done everything perfectly, and no parent, no matter how good they are, is perfect.
Finally, comes acceptance. Geez this snow is really coming down. Might as well put both hands on the steering wheel and hold it steady. The snow is going to come down, but it’s really not that bad and quite honestly, every flake is pretty cool. They’re unique really. Yes, you have an autistic child, but that’s just life. You can’t love them any less. You might, in fact, love them more. You are no different from every other parent out there in that you will do your best to make sure that child gets what they need.
I’ve often wondered what the alternatives to autism would be for my son. I realize that there are none. This is the child I have. He’s an amazing, unique, intelligent, terrific kid. He’s my kid, and I am fortunate, every day, to have to struggle with the spectrum compared to what I have seen, possibly through too many Jodi Picoult novels, other parents struggle with.
Autism might be a never ending snowstorm, but it’s a good one.