Parenting with Purpose: A Neurodiversity-Affirming Approach to Advocacy, ABA Therapy, & More
What’s in this post:
Hi I'm Nikki.
I’m a neurodiversity affirming mom and my son is in ABA.
*Cue the gasps!*
As an neurodivergent person who has masked herself for many decades I do not want the same for my Autistic son.
I do not want him to mask and I do not want him to become neurotypical.
I want him to have what I didn’t.
Confidence to be himself.
I didn’t grow up in a time that my diagnosis was something to be proud of.
It was a problem.
So I’ve always looked at myself that way.
A problem.
Autism is not a problem.
If you’re reading this you most likely just received an autism diagnosis for your child and you’re weighing the pros and cons of putting your kiddo in ABA.
Trust me, I’ve been there.
Scrolling blogs and Facebook groups at 2 in the morning.
And as much as the internet wants to scream at you that ABA is going to turn your child into a robot and you’re stressed beyond belief please read this first.
In my opinion neurodiversity affirming care is WHATEVER is best for your child to thrive in this world.
If you’ve met one person on the spectrum you’ve met one person on the spectrum.
Remember, nothing is black or white, nothing is forever, and you as the parent have a lot of say of how this goes.
Understanding ABA Therapy
ABA therapy, or Applied Behavior Analysis, is a therapeutic modality that focuses on improving specific behaviors like social skills, communication, and academics as well as adaptive learning skills.
ABA can be done in a center, in home, in school, and in the community.
This therapy is known as the gold standard treatment for Autism. The reason for this is because it has been studied for decades and has the largest amount of research to support its efficacy.
ABA is customized to each individual child which is an approach we both appreciate and know is most valuable to Jake. We are also heavily involved in these goals as we know not only what Jake’s motivations and preferred interests are. We have parent trainings (not on ABA) but more of a collaborative meeting to speak on Jake’s needs and how we can all meet them.
Jake has learned so many skills while being in ABA. Things like learning to look both ways when crossing the street or learning advocating skills like saying, “I don’t want to share” or “no thank you!”
We’ve learned that Jake loves praise and is looking for us to react when he does something like playing the piano. ABA is a good fit for Jake in this way as the core principle of ABA is positive reinforcement.
Challenges and Controversy
ABA is the only autism therapy that is usually covered by insurance. Which can put parents in a bind in supporting their child. They don’t have many options.
The recommendation for “treatment” is to do 40 hour intensive ABA.
If you are to look into the history of ABA there will be many including autistic adults oppose the therapy all together.
“Critics argue that it can be too rigid and focused on compliance. It’s crucial to find a therapist who balances structure with compassion and tailors the approach to the child’s needs.”
Brochures for ABA companies use to say things like, “No one will be able to tell!” “We can make your child fit in!”
And so it can be very difficult to make a decision of putting your child in an ABA program when the noise around you shares it could be damaging.
For a long time this was what parents wanted- their child to be neurotypical and for some that this still might be the truth for some like I wrote in this article here about the mother who thought her child wasn’t normal.
But we don’t feel this way and neither did the ABA center we chose to work with.
Our Journey with ABA and Other Therapies
When Jake was diagnosed 2 1/2 years ago we received a treatment plan that included 35 hours of ABA, occupational Therapy, and speech.
All I knew about ABA was that my husband was an RBT for a few years in his early twenties.
So, I dove in.
I looked, I learned, I researched.
As someone with a two graduate degrees and hyperfocus ability you better believe I zipped through all the data.
I contacted 27 ABA companies and asked how they viewed autism and how they work with autistic children.
The goal of getting therapies was not about changing Jake into a robot or a neurotypical person..
The goal of therapies was not to have him fit in amongst his peers.
The goal of therapies was giving our son a chance to be independent and THRIVE in a neurotypical world.
We won’t always be here.
Writing this makes me tear up.
It’s a very real fear I carry every single day.
Who will support him when we are gone?
Our hope is that he never has to deal with that and by the time we are on the way out he is a self sufficient happy confident adult.
Autistic children grow into autistic adults. He’s not changing nor do we want him to.
So we want to provide tools that will support him as he grows.
At the end of the day we decided to do a multi therapy approach. Speech, OT, and ABA and nothing full time.
Jake was at 27 hours for a year and 2 months and then went down to 14 hours and once pre-k didn’t work we went back to 27. It’s spread out throughout the week and good amount of time for him.
Remember you do NOT have to do 35-40 hours of ABA. You can decide what you feel is best for your child.
I searched for a center that was child led, open to parent involvement and feedback, and most of all affirming care.
And I found it.
And our son thrived and you know what? So did we.
We finally had tools to use and he did too.
Making Tough Decisions
About a year in we decided to try public special education pre-k.
It was a terrible decision.
You think ABA is bad?
Wait until you enter the public school system.
The teacher not only saw him as limited but saw him as annoying.
Extra things to do…hyperlexia, gestalt language processing, singing.
“He wont stop singing” the traditional speech therapist told me.
Well, yeah. He’s a Gestalt Language Processor. He sings and scripts…
I felt disheartened every single time.
I set up school meetings, she’d give me 15 minutes.
I’d share notes from his private speech sessions and nothing would be implemented.
So after 7 months we decided to pull him out.
It was a tough call to go back into ABA but what was the final decision was what he was like when I’d pick him up.
Although he cannot tell me he doesn’t want to be there he is communicating all the time. Whether that’s body language, scripts out of his mouth, or other indicators like I mentioned above.
Every time I picked him up from school only to see him dysregualted, scripting, disengaged, and sometimes with poop in his pants.
And when I picked him up from ABA Jake would come bouncing out full of energy, find me, lock eyes with me, run straight to my arms, and use “functional” language. I put that in quotes as I don’t love the word functional as I believe all language is language but for sake of this blog post - Jake would say bye bye to his therapist, he’d say let’s go!, he’d say in the car!
He had energy. He was happy.
And that’s all I needed to know.
Advocacy and Empowerment
This wasn’t the first change we made in terms of supporting Jake with his unique needs. We’ve switched speech therapists 3 times, OT 2 times, and school will now be 2 different settings.
As I shared on our podcast episode: I am a take initiative person and was designed to see, feel, and say.
And that’s what I do.
When I have seen, heard, felt, anything that has created a red flag or curiosity I ask about it.
It’s not comfortable but it’s always reassuring.
I use to believe that change would be when we needed to pivot or when something wasn’t working.
I see it now as it also can also be when we are ready to fly!
And when it’s time for transformation and up level.
Choosing The Right Therapy Team
Within ABA we have been heavily involved with goals, picking the right therapists, and using our voices to advocate for our child.
And all of this has been extremely well received.
When I ask for an extra meeting, she fits me in her schedule.
When I share notes from speech or OT, they are implemented.It’s a team effort.
My child is outgrowing the center based ABA program.
I know it.
He is ready for pre-k but he is not ready to roam the social landscape of a school setting solo yet.
This is not to be confused of me limiting his abilities this is us being a good parents recognizing that our son has splinter skills…he can count to100 and read before he was 4 years old but will run into a street without anyone stopping him.
He needs support & accommodations.
And the only option for having our child in a mainstream classroom (RIGHT NOW) is having an RBT go with him.
So, we are staying within ABA.
Asking Tough Questions
The first thing I’d recommend is to remind yourself no one is perfect and it’s ok to not say what you want to say perfectly.
When you begin to get an intuition about something that doesn’t feel right- write it down.
Sit with it, ask yourself these four questions:
1. What about this is uncomfortable?
2. Does this align with our bigger goals for our child?
3. How does this bump up against our values?
4. What actions do I need to take in order to feel more confident and comfortable?
How To Manage The Noise On Social Media
Parents with autistic children already have extremely limited options when it comes to support for their child and if they are privileged enough to have the ability to pick and choose private therapies…well, they’re the lucky ones.
Because for most of America and the world? That is not available.
Government services are subpar and they take forever.
And the cost of good therapies are out of reach for many families.
And this is where a lot of
Well, what if they have 3 other children?
What if they have 2 jobs?
What if they don’t have access to a computer?
We live in this black and white world and as an ADHD person I completely relate to it.
It’s either NOW or NEVER type of thing.
But, I TRULY believe that affirming care comes from intention.
What is the intention of the provider?
Because guess what, I’ve had some pretty shitty OTs and Speech therapists too! Who saw my son as nothing.
Let me give you an example of affirming care: I’ve had RBTs who only focused on “trials” and “dtt” and I’ve had RBTs who loved and cherished my son and talked to me about him like a human being.
When I pick him up they say things in ABA language where as the others talk about him like a person. When it comes to other therapists (like OTs and speech) that we have switched out of - they consistently used the words deficient or behind.
Something I want to point out and scream it from the roof tops is that NO MATTER THE THERAPY there will always be good eggs and bad eggs.
Kaelynn Partlow - an autistic adult- recently spoke at a conference to ABA professionals. There were over 800 helpers in the audience who were all trying to do better and learn how to support autistic people in the best way possible.
I wish I was growing up now.
The access to support is unbelievable.
My parents had none of these available to them and frankly I’m so glad they didn’t because if they did they probably would have caused me more damage due to the view of ADHD at the time.
There is a lot of noise online about what is best for an autistic person.
It can be EXTREMELY overwhelming for parents to make a decision on how to best support their child.
Sometimes it gets to me so much I have to block accounts or sign off for a bit.
This is OK to do. You should take breaks.
You absolutely should review, research, and learn more about different modalities especially from autistic voices.
AND you are the expert at the end of the day.
Remember- neurodiversity affirming care is what is best for that individual not something that is black or white.
Recap
No therapy is perfect
There will always be noise about what’s best
You are the expert on your child’s needs
Asking sensitive questions is TOUGH but you are CAPABLE!
The team supporting your child is the MOST important piece of all.
If you're considering ABA therapy for your child, I encourage you to do your research, ask questions, and trust your instincts.
Your child is unique, and the therapy approach should reflect that.