Monday, May 17, 2010

A Tale of Two Therapies

Okay, okay.  This picture is a little on the gross side.  But it's relevant to the theme of this post, so bear with me.

You can divide most autism therapies into two camps:  those that are done mostly by parents, and those that are not.  Some therapies lend themselves to either direction and indeed some research has been done in the ABA camp to see how allowing parents to run ABA affects outcomes.

In the "do it yourself" camp there is Floortime/PLAY, RDI, More Than Words, and biomedical options.  ABA can be done this way as well and many people do it.

In the "leave it to the therapists" camp there is ABA, standard speech therapy and occupational therapy.

Most of the "do it yourself" therapies involve therapists setting up programs, monitoring it and providing feedback to the parents.  But the parents do the bulk of the work, because after all, the parents are the ones with the children the most - at least, that is generally the way this approach is marketed.

There are definite positives to this approach:
1.  Training and supporting parents is much cheaper to governments who are expected to provide intervention for autism.

2.  Involving parents to this degree encourages them to accept accountability on how the intervention is working.

3.  Parents who are well trained are better suited to continue to teach their children long after the early intervention period.

But there are problems with it too:
1.  While we'd like to think most parents are the best teachers for their kids, some parents just aren't.  They are not going to do as good a job as a trained therapist.  They may lack the intelligence, or lack the time or energy to do a good job.  Full disclaimer:  I have done ABA with Alanna and after two hours with her my brain is fried.  I do not think a parent could realistically do this intensively and properly without help but that is just my opinion.

2.  Some parents need to work.  Many parents work but do not need to do so (I'm not talking about your neighbours who work to pay for the SUVs they got last month), but some, including single parents, do not have a choice.  In this case, the child is not going to properly receive intervention from a program training the parent because the parent may only see them in the evenings and on weekends.

3.  As a parent it is very easy to be lazy.  Add to that the pressure of turning every activity into something therapeutic and you have a stressed out parent.  I do try to incorporate all the principles of ABA and More Than Words into my interactions with Alanna, but it's nice that the "pressure it off" me because I know her intensive teaching time is taken care of.

4.  Some parents have multiple children.  It is difficult to provide the intensity of interaction with an autistic child when you have another, let alone three or more children!  Any time your child is spending off in their own world is wasted, and sometimes you have to let them do that if you have more than one child.

By the way, I should also note I'm not partial to the idea of universal government-funding for daycare (I am okay providing it for those who really need it).  Some people believe parents are idiots and the state should raise children.  I am not suggesting that at all.  We strongly believe in having a parent at home for kids and neither of ours go to child care.  However, I do think there is a case to be made for a balanced approach - one where therapists and parents are heavily involved in their child's intervention.

What's your take?


  1. I second your conclusion. Also there needs to be counselling for parents too. When I sit and work with Khaled, no matter how hard I try, I am EMOTIONALLY involved. When I do the same stuff with another kid, I am able to shut out the emotional turmoil, because when you are done, you switch off. With your kid you never switch off, you only go to a state where you are so tired, that you compensate.

    So yeah, government should pay for training parents, good home programs and counselling.

  2. I totally agree, Stranded. Alanna knows who her parents are, too...and she knows that she can always go to mommy for a hug and a kiss and not have to feel that demands are always being placed on her. As her mommy, it's my job to give her that unconditionally...and she knows.

  3. As a parent I am too emotionally invested to be my son's full time therapist. I can not contrive and over analayze all of our interactions- it's just too darn exhausting. As a parent I do feel that I know my child best but often I miss something in my child's behaviour and our therapist can point things out to me that I may not have noticed. Sometimes I wonder if I should quit my job and be home full time for our son, but I know deep down I can't meet all of his needs alone.

  4. I agree that balance is so important. If my child runs or screams every time she sees me because she knows that parent = demands, then I'm losing the potential joys of being a parent. I think there are times to compensate (as Stranded pointed out) like when you are worn to a shred, the child is in crisis, or life throws too much at you. Hopefully, there are times when remediation is happening too: my daughter continued to need a compensation for her rash (steroid creams) until we dug deeper into the issue and discovered that the gf/cf diet and replenishing good bacteria in her gut repaired her gut and she no longer needed the creams.

    I have definitely lived in the do-it yourself camp for ages, but I know that there are some great therapists out there. My problem is that I was spoiled by having the best early on and I wouldn't settle for less. I think each family needs to figure out what works best for them in that moment of time. I do like having a consultant: she is an RDI consultant who was an SLP in a former life. Since Pamela has aphasia and needs help with her dynamic thinking, this is a great fit for us!

    I know we have the proper balance because
    * Pamela smiles while we are doing the stairs because I go at her pace and give her enough support to feel competent.
    * We talk about the pictures we are dusting and her face brightened when I pointed to one picture and told her that she was inside me when it was taken. I teared up and she smiled.
    * She told me she used to eat Crispy Marshmallow Treats made out of Fruity Pebbles when she was in preschool EIGHTEEN YEARS AGO!

  5. oh man she remembered? How awesome must that sound haha..good for Pamela. Exciting. :)

  6. Hi! Having done therapies for years in both camps (outsourced for years, in-home for years), I'll reply quickly to the points made, just for fun! :)
    1) Some parents may be lousy teachers/therapists, but so are some teachers/therapists. Simply avoid the lousy teachers/therapists (whether that means you or the "expert") and use the good teahers/therapists (whether that be you or the "expert"). Some parents are better than the best experts, and certainly most parents know their child more intimately than most experts. If a parent chooses to outsource to a GOOD teacher/therapist (or perhaps a "good enough" teacher/therapist), make sure they still value and listento and incorporate parental input, knowledge, experience, and goals.
    2) Some parents need to work. Some parents, as you pointed out, just THINK they need to work! Some parents are "primary providers" instead of "primary caregivers.". Such is life. No one faults the parent who truly is not available.
    3) Some parents are lazy. So are some teachers/therapists. But then again, truly, not every single "opportunity" has to (or even should be) turned into "therapy time.". Not only will you have a stressed out parent (or therapist), but you'll also have a stressed out kid! Seriously, everyone needs down time, a chance to rest, relax, grow, and heal from the hard work of learning. It's true of atheletes working out their bodies, and it's also true of learners working out their minds. To turn every moment of life into work is indeed a real disservice to both the parent and the child. To relax a bit is not being lazy. If it feels like it, then one should perhaps practice relaxing!
    4) Spending some time with the other children may be just the opportunity one needs to remember to relax and to give the poor autistic kid a breather from all that exhausting work! It's also a great way to remind yourself (and the rest of the family) what the point of "fixing" the autism is all about in the first place--spending mutually enjoyable time with other real people! Yes, we all have work to do, but most of us prefer the downtime we spend with family and friends to the time we spend at the office (or doing the dishes or therapizing our kids). And that is true of our spectrum kids as well, if we'd let them "learn" that we aren't "all work and no play.". When we go so far as to turn even their play into work, what are we really teaching them? And how many of us treasure a bit of alone time, spectrum or not? Our spectrum kids deserve some "space" of their own too. Time in their own world isn't necessarily "wasted.". It may be just the refresher they need to come back and join us for fun (and for some work) in the "real world" (where people do more than just work all the time!).
    Just a few thoughts on a lazy evening, while my autistic boy is enjoying some downtime and my other boys are doing their things as well, before we all get together to work on dinner and the evening clean-up. :)

  7. Stranded, the video of her sharing that memory is in the hopper for my next blog post!