Why Parent-Led Autism Therapy?
“I love you to the moon and back.”
How often do we say that to our children?
We know it, we feel it, that love that hurts so much sometimes, it’s pure joy and it’s pure fear. It’s a love no parenting book can ever teach or prepare us to understand. We are the ones who get up all night, who fight through sleep deprivation, high fevers and long croupy nights. We are it. We are the parents, the caregivers, the last available soul to fix the problems and the ones lucky enough to be able to fix them.
First, We Pivot
Then come the early symptoms that tell you something just isn’t right. He isn’t doing what his sisters or his cousins did at his age. Maybe it’s because he’s a boy, maybe it’s because she had frequent ear infections?
All those things you tell yourself until you realize, it’s time to ask the professionals. “Doctor, she doesn’t look when I call her name. He doesn’t seem to enjoy it when I tickle him, instead he looks the other way.”
Then come the referrals and assessments, lots of titles and words you probably didn’t understand.
OT, PT, speech, social groups, special diets, supplements and specialists.
How do you decide what to do first, do you do it all at once?
You get referred for ABA and they assess your child and say they need at least 30 hours per week with your three year old.
Say what? 30 hours a week!?! Plus speech, OT, etc.?
Not to mention preschool and what about that 3-hour nap he still takes in the afternoon? Without that, he’s a monster and you may just lose your marbles without that break.
So What Do You Do?
Where is the balance amidst all these new have-to’s? Because, of course, you will do anything for this child, but even then, will all this be good for him? If he doesn’t get it ALL, what will happen to him? Will she regress further?
Don’t even get started with the parent support groups that provide endless amounts of “help.” Try this company, that company, this food, that doctor.
What if you can’t do it all? Heaven forbid you have a job and your child is at daycare or with a nanny most of the week. How is that going to work?
The Double-Edged Sword of Tutor-Led
In my early career, we had ABA tutors. But, I am old, and things have changed, we now call them para-professionals or RBT’s (Registered Behavior Technicians). Typically, they are the front-liners. They are the ones running lessons and doing the teaching within an ABA provider.
Sometimes, it works very well, you might get a tutor that adores your child, is motivated to learn and grow and your child responds beautifully to them.
But this tutor, we will call her Molly, is only available 3 days a week for the afternoon shift. The other two afternoons you have Sally, who just broke up with her boyfriend, has had 5 flat tires in the last month and is thinking about going to beauty school.
Man, if only you could have Molly all the time…she is amazing! Well, apparently the boss thinks so too because Molly was just promoted! Yay and…..Noooooooo.
“We do not all have to take the same path and that goes for our children and ABA, too.”
Then, We Pivot Again
So Molly now has to leave your program and there’s no one to fill her spot immediately, but they will hopefully find someone real soon. That leaves you with Sally, still talking about beauty school and you can’t help but worry that your child is missing out. But you can’t quit, you need these people, your child needs this program!
30 hours might be a great answer for some kids, but it doesn’t have to be the answer for all. Those of us in the field know it’s not the answer for everyone.
An old boss of mine would say “There’s more than one way to skin a cat.” I know, so gross, but once I stopped squirming, I started to get it. Often in life there are many paths that lead to the same destination, some long and windy, some short and bumpy. Point is, we do not all have to take the same path and that goes for our children and ABA, too.
Parent-Led for the Win
In Parent-Led, we took out Sally and Molly and everyone got a Molly, post promotion. She models what you can do, she gives you some tips and she’s always there to listen. She is teaching you how to be her!
Afterall, you are the one that loves that child like no other, remember? You are the one that would do anything for them. Who better than to teach them?
Pump the brakes for a second. You can’t do what Molly does, she’s magic. She knows so much that you could never know, right? Wrong.
Molly started out just like you, knowing nothing about ABA. Your advantage is that you have motivation only a parent can have.
Parent-Led Autism Therapy shows long-term benefits in decreasing ASD symptom severity.
The PACT (Preschool Autism Communication Trial) study by researchers in the United Kingdom found that preschool children who took part in a parent-led program had less-severe autism symptoms six years later, compared to kids who received standard autism services available in their local community.
The researchers found that, compared with kids who had standard autism services, children in the PACT group were less likely to have symptoms in the severe range: 46 percent versus 63 percent in the usual care group.
Geraldine Dawson, the director of the Duke Center for Autism and Brain Development, was encouraged:
“This study is important in demonstrating that parent-delivered therapy can be used effectively...”
But, it doesn’t have to be about the science or the research (as compelling as it is).
It can simply be about improving the quality of your life and the quality of your child’s life. And Parent-Led ABA can get you there. I’ve seen it first-hand through the many families I’ve worked with over the last fifteen-plus years.