Sunday, January 27, 2013

A conversation about sensory needs with the venerable Autistic self-advocate, Karla Fischer

Please note, this is copy and pasted from Facebook. Hence the formatting.
If I could teach you a way to deal with noise that didn't require ear plugs, and a way to navigate Dick's Sports that didn't take you hours, would you still find me contemptible?
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  • Karla's ASD Page why do you think you are "contemptible" to me?
  • Joshua A. Hyfler In all honesty, because I am a professional in the field of ABA, and I read and respect your posts but also have a differing view point. In the same breath, I think that stim is generally OK, but not everywhere all the time. Basically, I am conflicted ...See More
  • Karla's ASD Page First I want to set the "record" on you personally.

    1. You are here reading and you are conflicted. Means you are smart, objective and honest.
    2. You did not go into your job because you wanted to fail. ALL people want to do well in their jobs a
    ...See More
  • Karla's ASD Page If that is clear please answer me this.... do you know WHY an autistic person is stimming? (have you absorbed this concept) If the answer is that you think that you do know then please define the "line" that you use to stop it.
  • Joshua A. Hyfler The line where I stop it is if it A: interferes with learning; B: Can't be transferred to more meaningful experiences; C: Causes harm -- e.g., throwing an arm out of socket, sucking fingers until they bleed, atypical sexual arousal.
  • Karla's ASD Page Stimming is essential for me to learn. I pace, flap, rock, shake my legs, play with play dough, pipe cleaners or doodle in class. Always have and always will. Without those things I can think of nothing but how painful it is for me to have to sit and try to hear/process what is going on.
  • Joshua A. Hyfler What about interference with learning? -- I recognize B as being a subjective stretch.
  • Karla's ASD Page Do you know why I need to do this?
  • Joshua A. Hyfler I actually do similar things. I can't sit in a class without having paced around my apartment reciting important taking points over and over again.
  • Joshua A. Hyfler I sit at my desk for ~10m. at work before I go walk around outside.
  • Joshua A. Hyfler I bounce, skip, dance, sing, make asinine comments to my colleagues, and close my eyes for a period of time, but, if I could find a more efficient way at staying on task, I wouldn't oppose it.
  • Joshua A. Hyfler I was diagnosd with AD/HD at 3 yrs.
  • Karla's ASD Page the reason people with weakness in frontal cortex (including ADHD people) do this sort of stimming is because their nervous systems are disregulated.
  • Joshua A. Hyfler But don't you also think it may be because we don't have the "tools" to get us where we need to be? If I spin on Wall Street, I'm fired. Granted, it's unfair and societies constraints, but that doesn't change the reality...
  • Karla's ASD Page When a person's nervous system is dysregulated they must be supported first. In the case of Autism, it is most always a combination of being out of context and also having sensory processing issues on top of the normal EF issues that a person with ADHD experiences.
  • Joshua A. Hyfler I'm lucky to have mild EF issues, and I understand context, but I tend to think that sensory stuff is a result of learning histories -- mylenation and pruning of the brain, expanding neurons and lengthening synapses.. etc.
  • Joshua A. Hyfler I have these conversations all the time with colleagues -- when does behavior mod. stop being effective at dealing with sensory needs? I don't want my personality traits programmed out of me, so why should I assume anything for others with different experiences?
  • Joshua A. Hyfler However, research is really weak on the neurology...
  • Karla's ASD Page Stimming is about slowing down how fast I am burning through tokens. You can STOP the stimming but you will most likely cause either burnout or meltdown in a much shorter time than if you allowed it. Net is that you should always allow it when it is ...See More
  • Joshua A. Hyfler My question becomes this. If I can teach a 3 year old a faster, more efficient way of meeting their sensory needs (like what I do, skipping, humming, or stomping), to replace more grandiose displays of stereotypy, shouldn't I?
  • Karla's ASD Page So for everything that you "teach" me there is a cost and as the teacher you had best really know that cost. You asked me a question above and it is now time to answer...

    If you could give me some magic sauce that would make my sensory processing (th
    ...See More
  • Karla's ASD Page What is a grandiose display of sterotyping exactly?
  • Joshua A. Hyfler I would never want to "deprogram" an individual with an ASD. The adage "I'm not broken, don't try to fix me" has resonance... always. A grandiose of stereotypy, to me personally, is engaging in uninterrupted vocal scripts about Dora following viewing ones self in a reflective surface, waving ones arms towards the ground after watching Mickey Mouse in an attempt to watch more Mickey Mouse, or spinning.
  • Joshua A. Hyfler Karla.It's so late, but I don't want to end here. This is a debate I have with ABA colleagues frequently. I want to better understand the perspective of an Autistic AND be able to reconcile that with applied practice. I hope we can continue, and thank you so much for your time.
  • Joshua A. Hyfler Not debate, discussion!
  • Karla's ASD Page I would stop non of those personally but I am not in the moment to say for sure. In fact I would likely join in on the stimming (especially the waving of the arms and the spinning) to affirm that the child is accepted and to help them to push through ...See More
  • Joshua A. Hyfler I always make the point that I can never wholly relate with a client -- that they'll need to get their needs met -- but I can provide them with alternatives (e.g. teach them that our clinic is a safe place to spin, but they shouldn't do it in the knife aisle. It's to dangerous).
  • Joshua A. Hyfler What are the least dangerous of therapies? No confrontation intended...
  • Karla's ASD Page Any therapy done by a competent teacher.

    Seriously... Research doesn't prove ANY of them to be good over another (including ABA). But what research does tell us (and is also repeated over and again) is that the teacher matters more than the th
    ...See More
  • Joshua A. Hyfler I think all service providers have some work ahead of them. So long as we respect the individual's perspectives, preferences, and priorities, we should at least be doing no harm.
  • Karla's ASD Page 'zactly..... See how it works? Easy peasy.... But we are a LONG WAY off from getting it right the majority of the time. It is easy to say that you are taking perspective but because ASD material written about us by NT professionals is so wrong it is really hard to actually do it. You have a big advantage in your own wiring....
  • Karla's ASD Page btw: I disagree that sensory issues can be "cured" and also have other comments but let's save it for another day. Need to wind down here.