Food for thought

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I once knew a childhood educator who always used to say (often irritably), “I am not raising children. I am raising future adults.”

The skills required for being a successful child and the skills required for being a successful adult are completely different. Parents value obedient, quiet, passive children who do as they are told and don’t talk back, but the adult world requires you to speak up for yourself, be self-motivated, think for yourself, and make decisions independently.

I was great at being a kid.

I was obedient, I hated getting in trouble, and I hated breaking rules. I enjoyed learning new things, I enjoyed reading, and I had a good memory.

I liked pleasing the adults in my life and hated upsetting them. I learned not to whine or make a fuss because adults did not like that.

Dream child, right?

But it turns out that I’m a garbage adult.

I thrived in a structured atmosphere growing up, but it turns out I can’t create structure for myself.

I learned not to whine or demand my own way, but I am now incapable of standing up for myself and asking for what I want or need.

I was good at doing what I was told, but when employers wanted me to be proactive, I had no idea what to do.

To be clear, I’m not blaming my upbringing for this. I was naturally– perhaps even preternaturally– well-behaved because I hated getting in trouble so very very much. It’s just who I am and always have been.

Sure, I was still sucking my thumb in grade 3, I spoke exclusively about animals, and I was never invited to popular kids’ birthday parties, but none of that caused problems for the adults in my life.

As a verbal, bright, and comparatively-social (for an autist) child, you’d think I was marked for great things.

Nope.

I’m useless at adulting. I cannot function independently. My husband was my caretaker, and now that he is ill, my friends are my caretakers.

My mother is still trying to figure out where it all went wrong. She never expected this from me.

I think that most parents of autistic children assume that if their kid is easy to live with, their kid will have an easy life. If a kid is difficult to live with, their kid will have a difficult life.

They assume that if their child can’t talk, or use the toilet, or go to the grocery store without melting down, that their child will never live independently. They seem to think that if they can just get their kid to the grocery store and using the toilet and behaving themselves properly, they’ll be okay and won’t need to go into an institution some day.

But studies actually show that none of these things are reliable predictors for how independent your kid will be some day.

Adulthood isn’t really about grocery stores or toilet habits.

Hate grocery stores? No problem. We can order groceries online, or go at quiet times when there aren’t many people. Hate the cold toilet seat? Many adults wear adult diapers and change themselves as necessary. They can still be happy and functioning adults.

As for behaving oneself… it turns out that learning to be compliant and obedient is positively a handicap in adulthood.

70% of people with ASD are sexually assaulted in their lifetime. Many end up in abusive relationships or are taken advantage of by scheming nurses or caretakers.

It could safely be argued that saying “No!” and refusing to comply are vital self-care skills that should be encouraged, not discouraged.

No, all of the supposedly-important skills that therapists put so much emphasis on are more for the parents than the children.

I potty trained both of my kids as early as possible. I didn’t think it would give them some great start in life. I was just sick of diapers. Diapers are terrible, and it is wonderful to be free of them.

Frequent public meltdowns make life very difficult for parents, too. It’s embarrassing, it eats up an incredible amount of time, and it can be frustrating as hell.

Of course a parent’s life is better when their child is compliant, cheerful, and toilet trained. I’m a parent– I know what a difference that makes!

…But that doesn’t say a darn thing about how happy or self-sufficient this child will be as an adult.

In fact, long-term studies of autistic people show that it is extremely difficult to predict adult success in autistic children.

Outside of severe intellectual disability, there is no reliable predictor for independence in adulthood.

Interestingly, despite the rise of intensive intervention therapies, the proportion of autistic people achieving true independence has remained remarkably steady over time.

These therapies may help give the kid a push toward developing skills sooner than they would have without the therapy, but there isn’t much evidence showing an effect that lasts through adulthood.

Ultimately, what good does it do to spend time teaching an autistic kid to throw a ball or identify objects on a tray or follow orders unswervingly?

Studies find that autistic people diagnosed as children and people diagnosed in adulthood are almost identical when it comes to success in adulthood.

So the kids who were diagnosed as children and who likely received behavioral interventions and therapies were no more or less likely to be successful than the ones who flew under the radar or did not have access to diagnostic services.

…Although maybe they could throw a ball better. For some reason researchers didn’t focus on that.

We parents just want our kids to be happy and self-sufficient someday, so what are we supposed to take from this depressing research?

Actually, the studies I linked sound depressing, but there is a lot of good news in there.

Here are the big take-aways from studies of autistic people in adulthood:

Your Child Is Delayed… Not Arrested
You don’t have to spend an arm and a leg on therapy to get your child “caught up” to their peers. Longitudinal studies suggest that your kid will meet that milestone– just at their own pace.

Autistic kids grow and develop and change with time, just like any other kid.

Sure, you can pay to hurry it along, but that’s going to be for your benefit, not your kid’s.

The Best Skill You Can Teach Is Self-Advocacy
The same study that I quoted above noted that one of the biggest obstacles to education and employment in adulthood was accessibility.
“A combination of social difficulties and sensory sensitivities made negotiating educational, vocational, and community settings difficult. Many described feeling overwhelmed and unable to think clearly around other people, and some felt they had been victimized by classmates or co-workers. Some had found a situation that minimized these challenges– e.g. studying online or a job that was semi-solitary.”

I have been told by parents of autistic kids that their kid HAS to learn to tolerate the grocery store or HAS to learn that meltdowns in public “aren’t acceptable” because otherwise they can’t be independent someday.

But studies show quite the opposite– it’s the ones who learn how to work around their difficulties, not plow through them, who are more likely to succeed.

Knowing what you need to thrive and how to get accommodation as necessary may be the single most vital life skill an autistic person can learn. More than toilet training. Because if your child can go to college, get a degree, and get a job, then they can pay someone to change their diapers for them.

Don’t Expect Them To Fail
The one advantage that people like me have over those diagnosed as children is the fact that we were expected to succeed. Expecting your kid to succeed makes more of a difference than any “intervention”.

Researchers have found that many diagnosing doctors terrify parents into believing that their child will probably never live independently, and this fear ends up backfiring in the early adult years.

It turns out that expecting your child to fail makes them more likely to fail. Not that shocking when you think about it.

The best thing any parent can do is believe in, love, and support their kid.

Let your kid play. Let them be a kid. Don’t fret so much. Surround your kid with support and community. Studies show that this does more than any therapy:

So just… enjoy your kid.

Order your groceries and have a cozy Sunday at home instead, or maybe take a trip to a museum or go on a hike– whatever your kid might enjoy doing.

If you are going to do therapy, focus on quality-of-life stuff– OT to help with dyspraxia, or sensory integration therapy, or therapy to help develop skills using an AAC device if your child struggles to communicate verbally.

That’s the really important stuff: Comfort. Communication. Happiness.

I’ll always need someone in my life to make sure my dishes get done and my things get put away. But… So what? I’ve got a pretty good life, anyway.

Do your best to believe with all your heart that your child will figure things out and grow up and be okay.

There’s a solid chance that you’ll be right.