This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).
The concept of investing is one that is pretty readily accessible to us. If you save $100 towards retirement when you’re 30, and you invest, it will be worth far, far more than $100 you invest when you’re 60. We prize early intervention for children with autism not only because they make radical gains when we provide intensive behavioral therapy at a young age, but because, if we change the teaching so they may learn (to paraphrase Lovaas), we can get them to a place where they can learn in traditional ways. That’s huge – for many of these kids, thirteen years of special education will not only be costly, but it will not produce great outcomes (this is not a dig against special education – it is a vital component of education, and a massive improvement over what has been done in the past – but any special educator would prefer their kids in mainstream classes if they could learn and function effectively there). In contrast, with EIBI, they can access 13 years of mainstream education, which will prepare them for college, professions, hobbies, and all kinds of other pursuits. So, that early investment has a big payoff.
Empowering parents pays dividends, too. Think about this. Parents who have a child with autism who have additional children have a one in four chance of subsequent sons having autism, and one in eleven for subsequent daughters. Just in my practice I’ve met many families with two kids on the spectrum, and even some with triplets, all with ASD. So in that latter case, obviously, tools like Pivotal Response Training or ImPACT (the video below is a GrandRounds presentation that Dr. Brooke Ingersoll of Michigan State University, who developed ImPACT, did for us) pay dividends, because if we can do parent training for a parent with three young children that addresses autism-related issues, training the parent once has a threefold effect.
But it doesn’t stop there. PRT and ImPACT are great tools, that produce evidence based gains for kids and families, but they clearly do not take the place of EIBI or other intensive behavior analytic therapies for most kids with autism. That’s why, while we provide parent training interventions, they are primarily used as a stopgap to getting children into EIBI. Once kids are in EIBI, parent training doesn’t end. Every time we are able to produce a skill and show sufficient generalization so that it occurs for multiple tutors on multiple days, we want parents to know what those skills are and when/how they can be elicited. We love it when parents take these lists home and memorize them – “if my daughter can do that for you, then she’s going to do it for me, and her mother, and her teacher!” If parents are struggling to elicit the same skills we can get in the clinic, we provide additional training, using one-way mirrors, our bug-in-the-ear system, and anything else necessary to transfer the ability to demonstrate the skill to mom and dad. When we do get kids listening, talking, engaging in gestural communication, socializing, and playing, via EIBI, we start immediately thinking about things like getting those children into structured physical activity, like team sports, martial arts, yoga, or theatre. We’re also thinking, right away, about helping them make and keep friends. How do we do that? We empower parents.
When I do psychotherapy, I often tell patients that I meet with them for an hour a week, and this leaves 167 hours a week when I’m not meeting with them. If I can’t teach them something they can use in those other 167 hours, therapy will not be that impactful. Even with the 10-40 hours per week of intensive therapies, there are still many waking hours outside of therapy. So, the first way that empowering parents is that it massively extends the range of therapy efficacy.
There is a second way that empowering parents pays dividends. As a clinician, I do a lot of battle with and advocating in front of insurance companies, community mental health agencies, the state, and to some extent, the federal government and nationally influential bodies, to try to fight for access to care. I have a little impact – people respect my title and my education, and the number of children with autism I serve (although I’m very early in my career, and others are far more experienced than I am!). But my voice is not impactful in those spheres like parent voices are. They will listen to me politely, and then ignore me. They may be rude to you, but they know they ignore you at their peril. Your voice matters. So, the second way that empowering parents pays dividends is that the blend of your passion and voice with our knowledge and skills is the ultimate advocacy weapon to demand the things we need to help people with autism thrive.
The mission I set for my Center is: The Center for Autism, through formal clinical services, informal support programming, research, and community advocacy, empowers families and transforms the community so that people with autism may thrive. These are just two ways that empowering parents is central to our mission. Clinicians, how are you empowering parents? Parents, how can we lift you up?