I hear a lot of parents expressing hopelessness about their autistic kids’ future. Whether those kids are mildly or severely affected by developmental delays, sensory issues, and anything else related to their autism, their parents worry about what life will be like for them as adults.
But their kids are usually quite young still. I want to tell these parents that it gets better. There is no point worrying about the future when you don’t know what your child will be like in the future. Autistic kids develop more slowly, but they do develop, grow and learn. I believe it’s important to learn to *be* in the moment in general, but it’s especially vital for parents of autistic kids. It’s impossible to know what your four-year-old will be like as a 40-year-old. That is true of all kids but especially of autistic kids.
The same 40-year-old who seems so “high-functioning” may very well have been nonverbal as a child. He may have worried his parents sick about whether he would ever learn to feed himself or speak. And he may not have done all of these things until he was 10 or 19 or 27. There may still be days where he can’t find words and relies on technology to communicate. But he has come a very long way from the four-year-old he was.
My own autistic son is often called “high-functioning.” At 14, he is pretty capable, though calling him high-functioning dismisses how hard he has to work to be that way. But no matter how severely affected our kids are, what I bet we all have in common is that at some point, someone told us that our child would never do something. Or that he would need years of expensive therapy to do it. They told us to lower our expectations. Frankly, knowing what I know now, I am retroactively pissed off for all of us.
When Nick wasn’t reading by age 7, they told us he should have tutoring and various therapies. The one therapy we stuck with was vision therapy after I saw his eyes swivel in two different directions during an eye exam. But he adamantly refused to even try to read for another two years. Then, just after he turned 9, the switch flipped and he was reading. That summer, he read the whole Harry Potter series.
They told me he may never be able to make friends and that he would not have empathy. And yes, there have been plenty of other kids he hasn’t gotten along with, but those who appreciate him for who he is are the ones who were worth his attention and the ones he still has as friends. It took coaching him through many interactions and teaching him many scripts, but now that he knows how to express himself in different ways, he actually shows the most empathy and compassion of all my kids. When my two younger kids come home from school to find me lying down with the flu, they ask if this means they have to get their own snacks (LOL). But Nick gets me a blanket and asks if I need anything.
They said he’d never be good at sports because of his motor skills deficits. We let him try anyway. He tried a variety of sports through our local community center and fell in love with saber fencing. While he has always had to work twice as hard to be just as good, his focus and perseverance have served him well as a fencer, and this year he is hoping to qualify for a spot at Summer Nationals.
Oh, I worried about Nick so much when he was younger. When he was 2 and couldn’t hold down his food, when he was 4 and rejected any playmate who didn’t follow his orders, when he was 6 and chewed the neckbands and cuffs of every shirt to shreds within two wearings… the entire time from 3 months to 12 years when he was melting down constantly.
Now he is a teenager who still needs to eat on a schedule because he has no hunger cues, but the food reliably stays down.
It has been a long and winding road, but at 14, he has friends who share his interests, and he lets them have their own way often enough to keep them. But they also like his creative ideas and his logical thinking.
I learned to offer alternative stims, and he doesn’t shred his shirts anymore. Well, not a lot, anyway!
Plus there are great things about having my autistic teenager. He is truly useful around the house, not just because we have a strict chore chart, but because he likes to help. He is focused on academics at school (instead of social drama or rebellion) and is immune to peer pressure. He always follows the rules and he uses his scripts, so I can safely give him a fair bit of independence. And since Karla taught us how to accept and support him, meltdowns have become very rare. My friends who helplessly watched me struggle to parent Nick when he was younger now envy me my easy teenager.
If I could do Nick’s younger years over again, I would protect him more from sensory overload and unreasonable demands, support his physical development through fun and play instead of boring therapeutic exercises, and not expect him to act like other kids or keep up with their pace. I would build on his strengths and accommodate for his weaknesses while always giving him opportunities to strengthen them. I would worry a lot less about the “what-ifs” and just love him in each moment.