From: Dwight Stringham
To: Rep. McKell, M.,
Subject: Father of 8 autistics OPPOSES the Autism Bills
Date: 2014-02-13T01:19:20Z
Body:
If you want to help Autistic people, then OPPOSE the current well-intentioned autism bills.  HB 88 and SB 57.

I have 9 children, at least 8 of them have some level of autism.  This includes one severely impacted 10-year-old who is completely non-verbal.  I know autism, and I OPPOSE the current autism bills.

If you prefer calls to emails, my cell phone is (801) 419-4564
My name is Dwight Stringham

Due to my mix-up between "tracking" a bill and "subscribing" to a bill, I missed the hearing and the committee has now passed HB88 out to the floor.  But I do know that some members have some second thoughts since hearing from me.

How can you decide between what I say and what the advocates say?

Here's my suggestion -- find out what autistic (or former autistic) people think.  Would you pass a bill for the blind if blind people opposed it?  Would you pass a bill concerning wheelchair access if people in wheelchairs opposed it?  A Special Interest Group of well-meaning advocates are pushing a bill to protect an autism therapy that has been around for 30 years.  But have you had actual "patients" of this therapy ask you to pass it?  

If Autism is so horrible and this therapy has been around for 30 years and claims to make "up to 47% indistinguishable from their peers," then there should be thousands of former patients clamoring for this bill.  Have you heard from even hundreds?  How about just one?

The problem with this bill is NOT MONEY.  It's POWER!

The Special Interest Group that provides model legislation of this type always manages to write in favored status for one particular method of treating Autism.  A method that is fast losing favor among advocates and which has never had favor among autistic people themselves.  A method called ABA is always defined, but no other treatments are.  Boards and Commissions are always staffed with qualifications that ensure that ABA people dominate the decisions.  (Fox guarding the henhouse?) They have been around for 30 years and are only recently rushing to legislation around the country because they need to protect their eroding status.

What's wrong with ABA?

ABA is not only expensive and outdated, it is actually cruel.  Is it a "necessary medical treatment?"  Well, in the same way that football coaches used to considered it "necessary" to tell a kid with a concussion that if they don't walk it off and get out there, they will lose their spot and playing time, then yes ABA is necessary in the same way.  By finding powerful incentives, ABA therapists will make kids "behave" a little more normally.  But it does so without regards to the underlying condition that produced certain behaviors in the first place.  (And football coaches were using "evidence based" treatments when the used to do that too!  I'm sure that up to 47% of kids with concussions became "indistinguishable from their peers" if you only measured whether they were on the field or not.  Always ask questions about what "evidence based" things are really evidence of.)

Coaches in the past may have been well intentioned when they did this, just like many parents and therapists.  But with knowledge, they have moved beyond that.  Same with most parents of Autistics.  We got to this point by listening to autistics instead of listening to a group called Autism Speaks.


Do you want to talk to me more?

I live in Centerville -- 15 minutes from the Capitol.  I can make some adjustments with my work to come meet with you.  

Or call my Cell Phone at (801) 419-4564.

Do you want to read what autistic people say?

Despite doing well with their autism, the very process of politics and politcal advocacy requires the very skills that autistics are deficient in.  But they are all over the Internet.  Meet them on their turf.  Most of you may be too busy for this, but get your intern, or a family member or friend to look at the links below if you can't.

And remember LISTEN TO AUTISTICS!!!!  Let them settle the arguments raging among the advocates.

Thank you.   ...and here are the links.

***************************************************

Michelle Dawson’s The Misbehavior of Behaviourists (Michelle is an autistic and an academic.)

http://www.sentex.net/~nexus23/naa_aba.html

Blogs by autistic people.  I didn’t search for any bias.  These just came along from links.

http://thautcast.com/drupal5/

http://autisticchick.blogspot.com/

http://autismgadfly.blogspot.com/2010/08/ivar-lovaas-rip.html

http://www.autistichoya.com/2013/11/coopting-the-movement.html

Website with thousands of autistic people talking to each other. (More than 80,000 members.)  Try finding favorable discussion of the ABA treatment on this site.

http://www.wrongplanet.net/

Video of a FORMER autistic who explains why ABA is not good.  (Don’t have to watch the whole video.  Just realize that they guy doing the presentation was a severely autistic child.  He was brought out of it using a “Relationship Based” method developed by his parents as they rejected ABA.)  Try finding people like this promoting ABA.  Remember, it has to be the person who has/had autism, not someone who wants it for someone else who is autistic.

http://www.youtube.com/watch?v=U_KJ1Bd5S1U

Example of a Therapist who has moved beyond ABA.

https://sites.google.com/site/fragileworldonthespectrum/

Article showing the emerging understanding of Autism.  It shows a fundamentally opposite view of what autism is compared to the philosophical basis of ABA.

https://medium.com/matter/70c3d64ff221