I kindly replied no, and stated that we believed in a more intrinsic approach, and wanted to focus on Sunshine's sensory needs and self-regulation, along with medication to stabilize her mood disorder.
Little did I know at the time, ABA was being used as an umbrella term for ALL autism support services, not just the traditional Applied Behavioral Analysis procedures.
The residential treatment center did not and would not provide any autism support services to Sunshine, unless she was classified as receiving ABA treatment. This included visuals, fidgets, etc.
This is when we realized the problem with Saying You're Anti-ABA.
The Problem with Saying You're Anti-ABA
Autism Supports vs. ABA
We discovered this two weeks after Sunshine's admission.
She was spiraling out of control and regressing in ways we'd never seen before.
It was then that my husband and I began to advocate for Sunshine's autistic needs like we never have before.
We spoke to Sunshine's therapist and an administrator who oversees ABA services at the residential treatment center.
The administrator was wonderful with us, understanding our concerns about ABA. She was very sympathetic about our worries of it causing more harm than good, especially taking into consideration Sunshine's other diagnoses.
This administrator was excellent at putting our fears to ease, and explaining that when it comes to autism support services, we could pick and choose the ones that worked best for Sunshine and the residential treatment center would support that as part of Sunshine's individualized program.
Just because the service was called ABA, didn't mean that Sunshine would receive ABA services.
A Four Month Long Nightmare
The administrator we spoke to was wonderful, but that didn't mean that everyone was.
We had meetings with Sunshine's case manager.
We had meetings with the residential treatment center's administrators and executive director.
We had meetings with our county case worker.
We had meetings with our insurance company.
We spoke to a lawyer.
We had meetings with the school district.
It took FOUR months to FINALLY obtain the autism supports that Sunshine needed, in a way that met her sensory needs and focused on self-regulation.
We literally had to threaten legal action several times, to make sure that EVERYTHING Sunshine needed was put into place.
Part of this was a result of a lack of communication between administration and staff.
Another part included inconsistencies in the care Sunshine was receiving, depending on what staff was on duty.
The other aspect of this nightmare was that the residential treatment center only wanted to provide the minimum required supports to meet insurance needs and go no further, despite Sunshine's high needs.
Every time we thought the proper autism support services were in place, based on approval from insurance and other funding resources, we learned they weren't because of another hiccup in the process at the residential treatment center.
This was so wrong on so many levels and so dangerous for families who are trying to receive the proper help for their children.
Challenging the ABA Model
I was asked to define what ABA means to me and why our family is against it.
My husband and I looked up several definitions of ABA. All were vague stating that behaviorists use a variety of strategies to help the autistic child improve behaviorally. Some definitions did list out some strategies, but not all.
I began to interview friends and work colleagues about ABA.
What were they against and why?
What were they for?
Ultimately this process led to the creation of the Autism Supports Checklist.
It was the only way that I could adequately state my views on ABA and explain exactly what I was looking for to help Sunshine.
The Autism Supports Checklist
If parents don't understand the terminology on the checklist, they can look it up before an appointment so they understand exactly what's being discussed and recommended.
This checklist is a permission slip parents can give professionals when they do decide to accept any form of services or treatment. It explains what is okay, and what is not okay when working with their child.
The Autism Supports Checklist can be used as an interview resource when searching for a professional that meets the needs of the family.
The checklist includes a space for the child's name, the parent's signature, and date.
Parents can give this Autism Supports Checklist to anyone working with their child and hold the professionals accountable after it has been given to them.
The Autism Supports Checklist is a free printable. For your copy click on the link at the bottom of this post.
I NEVER wish the experience we have gone through to obtain appropriate autism supports for Sunshine on anyone.
No child should have to suffer through treatment that is damaging to them.
No child should be denied basic autism supports, if a parent declines ABA treatment.
We used the Autism Supports Checklist with Sunshine's team in residential.
Once we defined what we were against and what we were for, providing documentation that supported our views from those who have worked with Sunshine previously, we were able to obtain everything and anything we asked for to help Sunshine in residential.
Sunshine's BCBA is incredible and so supportive of our views regarding ABA.
She understands Sunshine, and is willing to work with our family in a way that benefits all of us.
She is respecting our wishes in regards to ABA practices, which is quite incredible.
Even more miraculous, is that she's seen the harm that ABA does to Sunshine when a staff member slips up and doesn't follow protocol.
I can finally rest knowing that no further damage is being done to my daughter.
There is no greater satisfaction than that, when it comes to helping an autistic child.
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