Reading the Research: Parental Therapists

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article describes a trend I'm seeing more and more, especially during this pandemic: the tendency to turn parents into work-from-home therapists.

The need for services and therapists, I think we can all agree, is greater than the supply and availability.  

This is in part due to the ever-expanding numbers of people diagnosed with autism, but also includes geographical differences.  Rural areas, for example, are less likely to have a selection of speech and language pathologists with training to aid them in supporting an autistic youngster.  And of course, one must never forget the cost of these services.  This too serves as a barrier that keeps people from the supports they need.  

So all these barriers exist, but the need hardly disappears simply because the supply isn't there.  What then?  

Increasingly often, in this "gig economy" we now find ourselves in... the answer is "fine, we parents will do it ourselves."  

At first glance, this sounds great.  There are training programs and apps and books that will attempt to teach you the philosophy and the actual mechanics of various types of therapy.  Then you don't have to shell out hundreds or thousands of dollars for that therapy, never mind transportation costs and the risk of viral infection.  

However, there's a few problems here.

First, adding the "therapist" hat to a parent puts an enormous amount of stress on that person.  Parents of autistic people tend to be pretty well stressed already due to our higher support needs.  So then, not only do these parents need to absorb an immense amount of knowledge, they also have to put it into practice and then go right back to parenting afterwards. Because the stress level is so high, more mistakes will be made, and the quality of the therapy will suffer.  Also, overstressed parents also don't do as good of a job parenting, because nobody performs their best when they're exhausted all the time.  

Second, the quality of these DIY resources varies widely.  While the insurance companies push Applied Behavioral Analysis as the One True Autism Therapy and many resources are available to teach those techniques, most autistic adults are firmly against it.  I was reasonably well-impressed with Floortime as a therapy, but practitioners are few and far between, never mind DIY resources.  

Finally, there's the cost in terms of time.  The time requirements for therapy are anything from an hour or two a day or "40 hours a week, so forget cooking, cleaning, and time for yourself."  This is simply not possible for some parents, who already work a job or three simply to keep a roof and food in existence.  In some cases parents will band together and trade off duties so the others can have a moment to take care of their other children, or even, God forbid, have some well-deserved time to themselves.  This is difficult to set up at best, and practically impossible during the coronavirus pandemic.  

Is the whole idea of parental therapists utterly without value?  I don't think so, no. But I don't see it as an equal value alternative to professional therapists and services, regardless of how effective the training materials are.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)