the case for backing the frick off

Today I wanted to write about something which will probably be unpopular with most Autism “experts”.

I want to talk about the potential benefits of less therapies.  I want to talk about eliminating interventions.  I want to talk about why what is called “prompting” is actually forcing and how that should be stopped.

Basically, I want to make the case for backing the eff off Autistic kids–Autistic people in general, actually.

Before you start screaming, know that I propose that we replace the over-ambitious therapy schedules, the interventions, the “prompting, and all of that garbage–and yes I do think most of it is garbage–with something gentler.  Friendlier.  Dare I say more humane?

I propose replacing all of the garbage with more supports, more accommodations, and more acceptance of differences which naturally occur in human beings.

Let me start by saying that before Evie was diagnosed with Autism, we went through the ringer with exploring all sorts of progressive diseases which, at the time, were being considered as the causes of of Evie’s physical disabilities.  When she was a baby, I started sucking up every last of iota of therapy offered.  Pretty quickly, it started to feel like too much.  When I voiced this, I allowed myself to be convinced that it was needed.

Make no mistake, I am not saying that PT, OT, and Speech have no place.  I am saying that by the time Evie was two, she was receiving all of these services plus.  To the point that almost everyday she had some type of therapy.

We had a developmental educator that was extremely concerned that Evie didn’t have interest in stacking blocks or coloring.  She had all of the best intentions–and I actually adore this woman.  But to this day, I remain scarred by the blocks and I have many cringe worthy memories of myself trying and trying to get the poor kid to stack and color.  When I would say, “maybe she just doesn’t want to stack or color,” she would tell me how developmentally important–essential it was for kids to do this.  I’m not arguing that this isn’t a developmental milestone for some kids.

But when I look back now, I can say that I was right.  Evie just did not want to do those things.  For reasons unknown.  She may or may not have been capable of doing those things.  But spending hours and hours and hours of time trying to get her to achieve that particular milestone seems so ridiculous to me now.  Not achieving those milestones didn’t affect Evie’s outcome.  And I wonder why we expect development of disabled kids–any kids really–to be so linear?  Would it not have been better to devote far less time insisting that Evie march the development march?  Couldn’t those hours and hours be better spent on more productive therapies/supports/accommodations?

When we slowed all of the therapies down to a crawl, let go of our expectations about development, and remembered that Evie is actually a kid that deserves to be a, you know, kid, Evie’s quality of life improved.  And so did ours as parents.  I know that there is a tremendous amount of pressure to “intervene” when a kid is not doing things according to the book.  I know there is a tremendous amount of guilt, that you feel as a parent when you’re not doing enough for your kid.  But enough can become too much really quickly.  And I would argue that the current prescription for early intervention is an overdose.  If I could go back and do it again, we would do a bit of pt and a bit of speech.  And we would do the hippotherapy and aquatic therapy because Evie loved those and because they turned out to be the most beneficial.  Coincidence?  I don’t think so.

I’ve come to hate the word intervention.  Evie doesn’t need an inte ervention.  I don’t want to stop behavior.  I want to learn the cause of it.  Then I want to support her or accommodate her as necessary.  When we look at behaviors as needing intervention rather than understanding, we cut out the most important piece of the puzzle.

Let me give you an example.

Before we knew that Evie is Epileptic, she would stare out the window at the sunlight.  Sometimes she would blink, sometimes she would laugh (in what we would later learn is called and epileptic aura).  When she first started doing this, I would close the shade when we were trying to do therapy.  I thought she was distracted.  If closing the shade wasn’t possible, I would position her so that she could not look out.

Turns out Evie was having seizures.  And that one of the things that induce her seizures is sunlight filtering through the trees.  Had I not been so focused on this “behavior”, maybe I would have picked up on the Epilepsy sooner.  So, yes it turns out that closing the shade happened to solve the problem.  But by focusing on the intervention rather than the cause, I missed something really important.  Closing the shade is an accommodation I make for Evie not an intervention.

Sigh.  Prompting.  What prompting seems to mean to many professionals is forcing.  Forcing has been called prompting so much, in fact, that many Autistic people will have a well-justified shit fit if you say that you practice prompting.  Because when they hear “prompt” they think back to their childhoods when their bodies were forced to do things against their wills.

When there is resistance from the person you are prompting and you keep “prompting”, it actually ceases to be prompting and it becomes forcing.  We have, somehow, come to accept that it is okay to rob Autistic people of their bodily Autonomy.  Calling it therapy doesn’t make it okay.  In fact, in makes it grosser.

So, I do prompt Evie physically.  The non-abusive kind of prompting…because I love her and respect her.  What prompting looks like around here is this.  Evie is hungry.  I take her hand and I guide her to the pantry so she can show me what she wants.  If she shows the slightest sign of not wanting to be guided, I stop.  If she doesn’t want to hold my hand, I stop.  Um, we are teaching Evie to use her ipad to communicate.  When learning a new icon, the first time or two, I will gently guide her finger to the icon to show her where it is.  She doesn’t want to do it?  We are done.  When she resists, I respect her.  As such, she very seldom resists my prompting.

And I don’t want what I’ve written about forcing to be misconstrued as me saying that there is NEVER a need to physically force a person’s body.  In dangerous situations, all bets are off when it comes to either of my kids.  If either of my children is going to, say, walk in front of a moving car, I will physically prevent them from doing so.  Or any person for that matter.  I simply mean to exercise the same respect for the body of an Autistic person that one would for a neuro-typical person.

I also want to talk about what I call over-prompting.  Even the gentle non-forcing kind of prompting can be overdone.  And this does include verbal prompting.  When I think about the fact that people are up in Evie’s business all freaking day long, the mere thought exhausts me.  At school, she has very little time when another person isn’t right beside her.  Prompting her.  Instructing her.  Talking to her.  Typically developing kids can zone out for a moment or two at school.  I think these moments are essential to a person’s mental health.

Autistic kids have, perhaps, an even greater need for these breaks from stimulation.  I often wonder how much the “behavioral” issues that Autistic kids are labeled with stem from a total sensory overload.  It is unthinkable to me, even if I didn’t think ABA is steaming pile of poop, that I would bring Evie to 25+ hours a week of ABA in addition to her school days.  Not only is she an actual kid.  A person who needs downtime.  She is a kid that gets overstimulated very easily.  As are many Autistic people.  I sure get cranky as hell when I am over-scheduled.  Maxine is a, um, demanding child.  I compare the times to when she is constantly making demands of me to how Evie must feel.  I’m no rocket scientist but over-prompting combined with over-scheduling seems like a recipe for disaster.

So now I’ve told you all about what, I think, kids like Evie don’t need/shouldn’t have.  Let me tell you about what works for Evie.  And I think she is a pretty good example of a happy kid–Autistic or not.

  • I spend a lot of time thinking about what sets Evie off in any way.  And I try my very best to support her by accommodating her whenever I can.  For instance, having her hair washed/combed can be traumatic.  Instead of trying to change her “behavior” around that, I accept that this is something very unpleasant for her.  I am so gentle.  I put in loads of leave in conditioner.  I have a really awesome brush that is made for showers.  She doesn’t object at all anymore.  I would cut her hair all off if she doesn’t seem to hate haircuts more.  (Her hair has been trimmed 3 times in her 7 years).
  • We’ve eliminated all therapy outside of school.  Well she does adaptive swim but that is recreational and she loves it.  Other than that, nada.  I’m pretty sure adding anything would be counterproductive.
  • We don’t force our expectations/interests on Evie.  There was a time when I was worried that Evie didn’t like to play with other kids.  That she wasn’t interested in playing ball.  Now we accept Evie as an individual.  She has her own interests–like swimming.  We offer her opportunities to try new things but accept that she doesn’t usually take to them.
  • Sometimes it is clear to us that Evie needs a mental health day during the school year.  When she does, she gets it.  She doesn’t need to be physically sick to need a day off.  Her mental health is equally as important.  These days are really helpful and tend to reset her mood.  Plus I get some extra time with her which is always a bonus.
  • Family gatherings/guests can be difficult if we expect Evie to socialize the way that we socialize.  We don’t try to force Evie to socialize.  She can come and go as she pleases.  It so happens that she does enjoy company when she knows that she has an escape route should she choose to take it.
  • We are insistent that Evie be respected as an individual at school.  We didn’t see eye to eye with the Autism Specialist (a BCBA) at school–she looked at Evie as a person with deficits caused by Autism.  She failed to see that Evie is an Autistic person with rights to bodily autonomy and deserving of respect.  Her “interventions” caused problems for Evie.  She is not on Evie’s team anymore.  I guess my message here is that maybe you don’t need an Autism Specialist.
  • Downtime.  I can’t over stress the importance of this for Evie.  For me.  For our family.
  • Sometimes we have to get things done.  Leaving a doctor’s appointment or the grocery store when there is no food in the house isn’t really an option.  So when I HAVE to be somewhere with Evie, I bust out all of the stops: her ipad, bubblewrap (we order it by the giant roll from office supply stores, silicone baking dishes, crackers, etc.  Being in strange environments is hard for her.  I try to accommodate that by bringing things that make her more comfortable.  Another really great thing for Evie is riding in my back on the carrier.  It keeps her very calm and safe.
  • Build a relationship of trust and respect.  I know that Evie trusts me.  It helps that she knows that her boundaries will be respected and that I am willing to work with her to keep her happy.  It makes sense that she is not as easygoing with people that she doesn’t trust.

’nuff rambling for now.  Go forth and give your kids some space!

8 thoughts on “the case for backing the frick off

  1. Couldn’t agree more.

    Think of it this way: School is the equivalent of a full-time job.
    If you have a kid in therapy for 30-40 hours a week aside from school, that’s the equivalent of a second full-time job.

    How would you, as a mature and competent adult, be doing with that schedule, with no personal time, for months or years on end?

    And then parents moan that their autistic kids can’t have playtime like regular kids…but it’s not because of the autism, it’s because of the therapy, because someone decided that how they were playing in the first place was the wrong way.

    I’m by no means against all therapy–there’s some therapy that I probably would have benefited from and wish I’d gotten as a kid (occupational therapy and adaptive PE, if it were done right). Therapies for specific issues can be useful. But when kids are being forced to work the equivalent of two full-time jobs, it is *not because of autism* that they’re not getting to have a real life or a real childhood.

  2. Pingback: special voice | love explosions

  3. I get this. I so get this. I overstimulate fairly easily, and the accommodation I get at university is legitimately “I can step out for a bit if I need to.” That’s seriously it. And my therapists are NEVER autism specialists. NEVER. (I’ve had enough stuff in my life that therapy to help dig through it is helpful, so I use my university free counseling service. Who are not autism specialists.)

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