Why We Don't Do ABA Therapy: An Autism Mom Speaks | NeurOrdinary Podcast 009

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Autism Mom Why ABA is bad

Buckle up, because this one may be a bit controversial….

 

In this episode, "Why We Don't Do ABA Therapy: An Autism Mom Speaks," I talk about our decision to not pursue Applied Behavior Analysis (ABA) therapy for our two autistic kids. 

 

I understand that every family's journey with autism is unique, and ABA therapy may have its benefits in certain, limited circumstances, but I want to shed light on our perspective and the alternative therapies we've chosen to prioritize.

 

As autism parents, we strive to make informed decisions based on what we genuinely believe is best for our children. 

 

My husband and I continuously learn, explore different options, and align our choices with the specific needs of our kids. Our focus is on embracing their individuality, respecting their autonomy, and creating a supportive environment where they can thrive.

 

In this episode, we discuss why we have chosen not to pursue ABA therapy for our children. We touch on therapies such as speech therapy, occupational therapy, and play therapy that prioritize overall well-being and individual needs, while also providing specific strategies to address challenges.

 

We also address concerns about ABA therapy's potential long-term effects and its heavy reliance on adult-led instruction…as well as the fact that many adult autistics are strongly opposed to the practice and have had severe, long-lasting consequences from it. 

 

Rather than using ABA, we prioritize teaching our children critical thinking, self-expression skills, self-advocacy skills, and the ability to set boundaries. We want to empower them to navigate the world confidently and stand up for themselves, particularly in the face of unique safety concerns and risks that autistic individuals, especially women, often face.

 

Whether you’ve done ABA in the past, are currently doing it, or you’re considering it for your child, I urge you to listen to today’s episode. It could have a huge impact not only on your child but the relationship you have with them now, and into the future.



New episodes of NeurOrdinary are released every Thursday…be sure to like, subscribe, and leave a comment or review letting me know what you think. And as always, keep it spicy!

 

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Resources Mentioned in This Episode

Chris Bonello, Autistic Author and Advocate - Autistic Not Weird

 

Pathological Demand Avoidance in Autistic Children: What Autism Parents Need to Know

 

Thriving Together: Positive Parenting Tips for Families Living with Autism

 

The Hidden Consequences: Exploring the Negative Side of Autism Warrior Parenting



 

Transcript:

Hey, I’m Karen. And I’m a mom to two amazingly neuropsicy autistic kiddos. If you’re an autism parent like me, you know I don’t have the time to make a podcast intro. I also lack the tech skills, so let’s just get into it…this is the NeurOrdinary Podcast!

 

As a mother raising children on the autism spectrum, I want to share my perspective on why my family has chosen not to pursue Applied Behavior Analysis, or ABA therapy. It's essential to recognize that every family's journey is unique, and this episode aims to shed light on our personal choices and experiences. So, let's dive in.

 

So what exactly is ABA?! 

 

According to Autism Parenting Magazine (and I am quoting directly here)...

 

 “Applied Behavior Analysis Therapy (or ABA Therapy) is a therapy method often used for children with autism which modifies behavior using positive reinforcement. Applied Behavior Analysis states that desired behaviors can be developed using a rewards-and-consequences system. In this method, a therapist identifies and sets a goal for the child to develop a target skill or behavior and measures their progress throughout the therapy period.

 

ABA therapy is generally considered the most common therapy for children with autism and is thought to be the most established and well-documented approach due to its scientific and systematic nature.”

 

So as you can see, the therapy is rooted in a therapist making a determination of what is and isn’t allowed and then rewarding (or bribing) the child to go along with what the therapist wants them to do…at least it’s somewhat of an improvement from the literal shock treatment that autistic individuals used to get “treated” with when ABA was first developed in the late 1960s…

 

The first thing I want to talk about is my belief that my children don't need 30-40 hours a week of therapy. ABA therapy is often intensive, and it requires a significant time commitment. While it may benefit some individuals, the only time I personally think it should be considered is:

 

1) if the child asks for it 

2) they are actively hurting themselves or others and all other therapies like OT and speech have been unsuccessful…

 

I believe in focusing on quality over quantity. I want my children to have a balanced childhood where they have time to explore their interests, engage in play, and develop their own unique talents. I believe that nurturing their passions and providing them with a supportive environment is just as important as any therapy program.

 

I have seen my children thrive and make progress through more moderate therapy schedules that allow them time to engage in other meaningful activities. They have developed social skills, communication abilities, and functional independence at their own pace. By allowing them the freedom to explore and enjoy their childhood, we have witnessed their natural curiosity and intrinsic motivation to learn and grow.

 

The next reason our family says NO to ABA is our desire not to override our kids’ natural autistic traits. Autism is a neurological variation, not a defect to be fixed. Our children have unique strengths, interests, and ways of perceiving the world. We value and celebrate their autistic traits, as they contribute to their individuality and strengths. Instead of focusing on trying to change their natural behaviors, we choose to provide them with the support they need to thrive and embrace their autistic identities.

 

I don’t need eye contact to know my kids are listening to me, and I’m actually aware enough to know that if they are using all their energy to look at me, they physically don’t have the energy or attention to use their ears to listen…I want their ears, not their eyeballs! I don’t demand that my autistic children look and behave like their neurotypical peers. Again, unless it is a safety issue and other therapies haven’t helped, let autistics be autistic!

 

My children have taught us the beauty of neurodiversity and the importance of understanding and accepting their unique perspectives. We believe in creating an inclusive environment that celebrates their differences and fosters their self-esteem and self-acceptance. By embracing their natural autistic traits and not trying to make them hide or change the very core of who they are, we empower them to develop their own sense of identity and be who they are meant to be.

 

Another reason we don't pursue ABA therapy is that we have found other supportive therapies that align better with our goals. Speech therapy, occupational therapy, and play therapy, for example, have proven really helpful for our children. These therapies focus on developing communication skills, enhancing sensory integration, and addressing specific challenges in a more holistic and individualized manner. We believe in prioritizing therapies that respect and nurture our children's overall well-being and individual needs.

 

Through speech therapy, our children gained functional communication skills and found alternative means of expressing themselves, even when meltdowns cause them to lose their ability to communicate verbally. Occupational therapy helped them develop sensory processing strategies so they are more comfortable in their own bodies, and they’re able to advocate for what they need in any given situation.  It also improved their fine and gross motor skills, enabling them to participate in daily activities with greater ease and independence which are key factors in reducing meltdowns and frustration. Play therapy allowed them to understand their emotions and how they feel, and helped them interpret the sensations they have as the feelings they were actually experiencing. These therapies have allowed us to target specific areas of development while respecting and honoring their unique strengths and needs. To quote one of my favorite autistic authors, Chris Bonello, the goal of therapy isn’t to make them act like neurotypical kids, it’s to turn them into autistic kids who don’t struggle!

 

As the mom to an autistic daughter, one of the biggest reasons we don’t do ABA is I want her to stay feisty because she'll need it to stay safe as an autistic woman. Society can be challenging for autistic individuals, especially as they grow older. Autistic women face unique safety concerns and are often more vulnerable in all the ways one can be vulnerable. I want my daughter to maintain her confidence, assertiveness, and self-advocacy skills. Her turning into a cat and hissing at some weirdo who is bothering her could be the thing that literally saves her life and helps make sure she isn’t turned into a victim! I don’t want any therapist to think it’s their place to eliminate that for her because it’s “weird.” I don’t want her being trained (or perhaps a more appropriate word is groomed) to override her sense of autistic autonomy in order to do what some adult tells her she should, and also rewards her for doing. By embracing her extra spicy sassitude, she can navigate the world with strength and resilience, surrounded by a support system that understands and respects her needs.

 

While ABA therapy aims to shape behaviors and compliance, I believe it’s more important for my daughter to retain her sense of self and stand up for herself in a society that may not always understand or accommodate her needs. By allowing her to stay truly and sometimes epically herself, we are fostering her self-advocacy skills and equipping her with the tools to navigate a world that may not always embrace her differences. We prioritize teaching her about consent, boundaries, and self-protection, empowering her to make choices that align with her comfort and safety.

 

Now my other child also benefits from not having ABA therapy but for different reasons. He has a Pathological Demand Avoidance (PDA) profile and wouldn't tolerate ABA therapy. PDA is a specific profile within the autism spectrum characterized by extreme resistance to everyday demands. Individuals with PDA often experience high levels of anxiety and find it challenging to comply with external demands. ABA therapy, with its structured and demanding nature, is likely to make things much, much worse for him as a person, and also our relationship with him as his parents if we chose to put him through it. Instead, we focus on strategies that support his autonomy, minimize demands, and respect his unique ways of engaging with the world ... .and shocker! He’s doing great!

 

We have found that a person-centered and flexible approach, incorporating elements of PDA-specific strategies and accommodations, has been more effective in supporting our child with PDA. By adapting our approach to meet their needs and reducing demands, we create an environment where they feel safe, understood, and supported. This approach helps to minimize anxiety and allows them to engage more fully in their daily activities. I’ll leave some information about how we address PDA in our family in the show notes.

 

We talked about it briefly already, but this is the biggest reason we say no to ABA…I don't want my children looking to grown-ups to decide for them what to do and how to behave because it sets them up for potential abuse. ABA therapy heavily relies on adult-led instruction and prompts to shape behavior. While this approach may be effective for some, I have concerns about the potential long-term effects. And a lot of adult autistics have come out to say how incredibly damaging ABA therapy was for them as children. I want my kids to develop their own sense of autonomy, critical thinking, and self-expression. By fostering their self-advocacy skills and teaching them to set boundaries, we empower them to navigate the world confidently and assertively.

 

As parents, my husband and I believe in providing our children with the tools to make informed decisions, communicate their needs, and assert their boundaries. This includes teaching them about consent, respecting their preferences, and valuing their unique perspectives. None of which we see happening in ABA therapy. By promoting our kids’ autonomy, we’re preparing them to navigate relationships and situations with confidence and resilience. We prioritize open communication and a collaborative approach that empowers our children to become active participants in their own lives…even if it does make our lives as parents a bit more difficult. See, I’m not parenting with the idea that my kids should be “easy” I’m parenting with the plan in my mind that I’m raising adults who need to be a part of this world and will be adults for a heck of a lot longer than they will be children…they need to learn how to live and work on their own, with their own ideas about how they should behave and act, because their won't always be someone over them, literally holding hands over hands telling them what they’re supposed to be doing…

 

So, there you have it—the reasons why our family has chosen not to pursue ABA therapy. It's important to remember that every family's journey is unique, and what works for one may not work for another. The decision to pursue or not pursue ABA therapy should be made with careful consideration, taking into account the individual needs, values, and goals of each child and family.

 

It is crucial to acknowledge that ABA therapy can be beneficial for some individuals, and this episode isn’t intended to invalidate or dismiss their experiences...and I’m certainly not here to attack you for your choices. My intention is to share my family’s perspective and highlight alternative approaches for the autism community. With love and respect, if you feel called out or triggered by what you’ve heard today, I’d encourage you to sit with that and see why it is…did something I said make you regret your choice? Is it easier to be mad at me for pointing it out than it is to deal with your own feelings about possibly doing something unintentional that may have hurt your child or damaged your relationship with them? Just something to think about before you come for me in the comments…

 

As autism parents, we strive to make informed decisions based on what we believe is in the best interest of our children. It's a continuous learning process, and we must be open to exploring different options, therapies, and strategies that align with our values and goals.

 

Remember, every child is unique, and their needs should guide the choices we make. By advocating for their individuality, respecting their autonomy, and fostering a supportive environment, we can empower our children to thrive and embrace their strengths.

 

Thanks for listening! New episodes of the NeurOrdinary Podcast drop every Thursday. Don’t forget to like and subscribe, and if you’re feeling generous leave a comment or review to let me know what you thought about today’s episode. And whatever you do, keep it spicy!

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