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I received the following from a reader--I hope it's helpful!

I work for The Arc of the United States and we have over 600 chapters throughout the country supporting people with intellectual and developmental disabilities and their families.

Each chapter comes in different shapes, sizes, and dynamics but we at the National office do a lot of collaboration with Autism Self Advocacy Network and other progressive, autistic-led groups to ensure that we are always working in collaboration with, not just for, folks with disabilities.

Please feel free to share our information if you think it may be valuable.

https://thearc.org/find-a-chapter/

https://thearcatschool.org/

https://futureplanning.thearc.org/

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At the risk of sounding like a total dick, maybe you're the parent who's gonna start this thing in your area?? Maybe only one other person will come, maybe they'll suck, but odds are there are other people near you who are as balanced about all of this but, as would be expected, need some company. The times I've just gone out on a limb and raised my hand to gather a crew of outsiders haven't always been successful, but I've always been glad I tried. PS acknowledging that there should totally just be stuff like this set up and ready to keep parents from feeling isolated and we shouldn't have to do it ourselves.

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Oh also OurTism.com has online groups. They are based in LA. (I believe.)

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May 27, 2022Liked by Claire Zulkey

Far from an expert here but I've found the Little Senses books by Samantha Cottrell to be really helpful for explaining to my kiddo how some brains work differently than others. They're just good, readable picture books, well illustrated, and they don't show magic fixes, just practical coping measures.

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I received another take on ABA from a witch who is an expert in child development and special education -- I hope it's helpful extra info. She said she's happy to answer any q's if ppl want me to forward to her:

"ABA is not behavior modification, although it is based on the same philosophical understanding of behavior. ABA is a teaching method based on a natural science account of behavior, which is the understanding that people engage in behavior (or don't engage in behavior) because of their history of environmental consequences. In simple terms, we have experiences, and we learn from those experiences. There are a set of well-defined procedures based on this understanding such as discrete trial training, task analysis, prompting, shaping, reinforcement, functional behavior assessment, etc., that are particularly efficacious when it comes to teaching skills to people with disabilities, and ABA is often used as an intervention approach for people with disabilities because there is a strong evidence base for efficacy in teaching new skills. The American Academy of Pediatrics recommends ABA as a "treatment" for autism [https://publications.aap.org/aapnews/news/7662?], although most behavior analysts don't prefer to think of the field as a "treatment" and our application of the science is much more individualized than that recommendation implies. ABA is rather wrongly associated with punishment partially because we use the term "consequence" to describe an event that occurs after a particular behavior, and that term has a negative connotation in our society. But a consequence for a job well done could be a raise in pay, and a consequence for a child saying hi to their parent could be a smile and a hug.

Applied behavior analysts have to sit for a board certification examination and be licensed to practice. They have to complete 1500 hours of supervised fieldwork, coursework in ethics (as well as at least 6 additional courses) as part of a Masters or post-Masters degree program, and take a board-certification examination before becoming eligible to apply for whatever their individual state licensure requirements are. Behavior analysts have to complete 32 hours of continuing education every 2 years. Behavior analysts must adhere to a strict ethical code [https://www.bacb.com/wp-content/uploads/2022/01/Ethics-Code-for-Behavior-Analysts-220316-2.pdf] or they can lose their license and board-certification standing [https://www.bacb.com/]. ABA is often delivered in schools and it is funded by health insurance. There is quite a bit of accountability and oversight built into the funding and practice of ABA. We have to have signed informed consent for all interventions, plans, and procedures before we can proceed, and we also seek client assent whenever possible.

The mischaracterization of ABA is a huge problem in our field right now. Part of this mischaracterization is due to the fact that ABA as a field is relatively new. Although the field was "born" in 1968, standards for practice were not initiated until 1999. Over the past 20ish years, the field has grown from less than 100 practitioners to the current number of over 55,000. That is obviously an exponential expansion. Due to the field being so young, many people pluck old examples of behavioral science (which ABA grew out of) and apply it to our modern-day standards. That is like saying that neurologists today are bad people because they perform lobotomies. Another problem is that many people claim to be behaviorists when they are not behavior analysts. They have not had the level of training or experience required to be a behavior analyst, and they do not have the oversight of our regulatory or licensure boards. They are wrongly associated with the field of ABA. Finally, there are some ABA practitioners that don't do a good job, just like in any field. Some nurses make mistakes, and some teachers have sex with their students. That doesn't mean that all nurses are incompetent or all teachers are pedophiles. Our field is working hard to ensure that we minimize the number of folks who do not do good work by continually increasing our oversight and our requirements for ethical practice. We are listening to all criticism and trying to be as open and reflective as possible. We are trying to be humble and to learn from this feedback. But it's also exhausting to be met with vitriol that is often exaggerated or based on a false assumption. Many of our harshest critics never experienced ABA or even know anyone who did experience it. Many, many families, particularly families of children and adults with severe autism, strongly support the use of ABA based on their own personal experiences with board-certified and licensed practitioners. Please consider taking a look at The Autism Cafe (Eileen Lamb) on FB or the National Council on Severe Autism (also on FB) for an example of some of the issues this community is facing."

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If the first witch would like to share her checklist binder layout, I'd love to see it! :)

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