CW: ableism
Sometimes a client’s biggest barriers are their caregivers. For younger clients, it’s often grandparents who are stuck in their ways and have toxic beliefs such as “they will grow out of it” or “when I was a kid, there was none of this autism stuff.” For older clients, you run into parents with similar issues. They may also infantilize and overprotect their children. They feel even their adult disabled children with disabilities “have the mind of a toddler,” and gods help me when it’s time to deal with things like puberty and sexuality.
Then there are the martyr parents — the Autism Moms with a capital A and M, the ones who run their own blogs or get onto “mommy groups” and talk about how difficult their lives are because of their autistic children. They have a tendency to defend ABA in autism groups that criticize it, and they love to post videos of their children having meltdowns to gain sympathy. Everything they own is covered in puzzle pieces, and don’t you dare criticize it. Every April they “Light it Up Blue,” and Autism Speaks eats this shit up.
BCBAs are in a tough position here. We can’t provide services if parents aren’t on board. Our services will not be effective if we aren’t also supporting the caregivers. We may also have to hear some really ableist shit and let it go until the caregivers trust us enough to learn better. Where is the line though? How can we properly support our learners and uplift autistic voices while also avoiding alienating their caregivers who may hold problematic beliefs?
Let’s get some things straight first
It is NEVER OK for anyone to go into autistic groups and break their rules. This includes defending ABA when the group expressly states they are not pro-ABA.
It is NEVER OK for anyone to accuse traumatized people of attacking them when a traumatized person expresses criticism.
It is NEVER OK for anyone to talk over the voices of any marginalized group. In fact, before you even head into these areas, see my advice.
It is NEVER OK for anyone to treat the disabled people in their care as burdens, to resent them, or to treat them as less than human.
Everyone is entitled to support though. The trick is to validate their feelings and help them cope without allowing it to spiral into toxic thought processes. This is where BCBAs could learn a thing or two from talk therapists. Often, those practitioners who are most vehemently speaking about family support show some very problematic behavior of their own and tend to be family members of disabled people themselves, such as parents or siblings. What I find in talking with them is they almost never have anything truly positive to say about their disabled family members. They will talk a lot about the “burdens” caused by said family member and how much those “burdens” eased when they received treatment. The programs these practitioners create tend to prioritize relieving these “burdens” from the family over the actual needs of the client, which, as you can imagine, can lead to some incredibly harmful practices. This is especially true when the emphasis is on getting results quickly rather than safely.
Don’t get me wrong: We should absolutely support families, but the learner’s needs come first. Always.
When you’re a BCBA serving families, sometimes you are also a family therapist. When you have a family who has just received a diagnosis (usually of autism), chances are they are feeling very lost. Medical professionals frequently use a method I like to call “Diagnose and Adios.” That means they give the family the diagnosis, and usually send them on their way with zero guidance or information. Sometimes it comes along with a “prescription” for ABA, but that’s generally it. The amount of parents I see coming in to ask about services who say their child was just diagnosed as autistic and they were told they need ABA is staggering. They usually have no idea what ABA is and barely any idea what autism is. They were “Diagnosed and Adiosed,” then googled ABA providers, and here they are.
That is not OK for literally anyone involved.
Autism caregiver communities are plagued by toxic positivity
You may have heard the road to hell is paved with good intentions. I find that to be very true on multiple levels. In recent years, there’s been a rise in autism awareness and, with it, overall acceptance of marginalized groups. That is a great thing, and I will never not support that. There’s a side effect, though, and it affects caregivers. That side effect is guilt. So many caregivers fight against their own feelings and constantly guilt themselves over them. In their own attempts to learn and combat ableism within themselves, sometimes they end up spiraling and negatively affecting their own mental health.
I’ve had more than one parent crying in my office because they were struggling, but they were so afraid that their words are going to be taken as resenting or criticizing their children that they didn’t want to seek help. This is where we have to be empathetic and sort of multilingual. We have to be able to see where the parents are coming from. All parenting is hard. Parenting people who may not be able to express their wants and needs or who engage in aggressive or dangerous behaviors is even harder. But parents are sometimes attacked for expressing this stress, and that’s not fair either.
It is not ableist to sometimes feel frustration about a disability. Parents are human, and the overwhelming majority of them really are trying to do what’s best for their children. It’s important that we acknowledge that and give all caregivers a safe space to have tough moments. They are faced with mountains of conflicting information, all of which is sometimes shoved into their faces pretty aggressively. This may be an entirely brand new world to them, and to expect them to do everything perfectly from day 1 is unrealistic and unfair.
No parent should have to beat themselves up for feelings they can’t help, and no parent should have to think that their feelings aren’t valid because the people they are caring for are part of a marginalized group. Treating parents that way will not make them more equipped to do what’s best for their loved one, but punishing them for feeling stressed is a great way to build the resentment we are trying so hard to prevent.
The learner still comes first
If parents feel listened to and supported, they are also going to be more equipped to receive your support and services. That gives you a place to find potential seeds of ableism or resentment and redirect them to something more positive and in the learner’s best interests. First, reinforce the good stuff, even if it’s very small. Are they trying? Acknowledge that. Did they say something potentially problematic, correct them constructively.
Here’s an example: A parent tells me they’ve been reinforcing their child’s attempts to communicate, whatever that might look like for the child. Awesome! That’s trying! Then, they mention that they have been withholding the reinforcer until their child makes eye contact with them. Oops. That’s a problem. How do we address it?
First: Reinforce the effort and the good part. They are allowing their child to communicate in a way that is natural for them, whether it’s leading, pointing, etc. They are not forcing a particular communication method. Good job!
Second: Educate. Explain the issues with forcing eye contact and withholding reinforcers with references to feedback from actual autistics. I have never had this go poorly. Most of the time, parents are incredibly grateful for the feedback, because, in the end, they want to do everything they possibly can to empower their kids. The overwhelming majority just want to do the right thing, but we have to keep in mind that there is conflicting information everywhere and that it’s up to us to give them the tools to sift through it.
When there’s a conflict of interests
What about when caregivers’ priorities don’t align with the learner’s best interests? This can come in a variety of flavors. Most of the time, it’s just honest ignorance. Sometimes eye contact is listed as a big time priority because they genuinely believe that this is an essential skill for life (it’s not). Reducing stimming might come up because they are concerned about things like bullying or maybe because the way the person is stimming is something very annoying to the caregiver that they are not able to tolerate for long periods of time. Usually, just respectfully educating them is enough to solve the problem.
Sometimes, the concerns are more serious, though, such as a caregiver’s inability to accept an individual’s sexuality, gender or gender expression, or romantic orientation. When simply educating isn’t going to be enough, there really isn’t a simple answer. It can be a delicate dance of building caregiver trust and slowly educating them over time. Telling them they are just straight up wrong and bad isn’t going to help anything, as much as it might make you feel better in the short term. Most likely the family will just end services with you and go somewhere else that will most likely harm the learner.
Steering the conversation back to the learner is a good place to start. It helps keep the focus on them and makes sure the family is always clarifying with you (and by proxy, themselves) that the learner’s needs are most important. Include the learner themselves as much as possible and make sure their input is heard and put to the forefront (see Self-Advocacy). Direct them to sources from disabled activists who may be able to better articulate and explain their needs. Research and data is also important, and you may have to go across fields (i.e. psychology) to support your point.
Most parents, when presented with facts, will shift their perspectives and their goals, especially when these facts are presented with cultural considerations. Cultural humility and competency is a must. Colonialism and cultural elitism doesn’t help anyone, including the learner.
The main take-away
Caregivers will not be able to empower their loved ones if they are not empowered themselves. Sometimes that means just hearing them out, or it might mean referring them to trained family or personal counselors if there are mental health issues at play. That is outside of our scope, but that’s why collaboration is a thing.
As the movie I Am Sam illustrated so beautifully: Parenting is hard, and all parents are going to need help sometimes. Many challenges present in supporting individuals with disabilities are poorly understood, and our society is not built in a way to make proper support easily accessible. The more we uplift disabled voices, though, the more we can help improve society’s understanding, and with that, support will follow. Give your families the appropriate resources to learn, keep the client first, and everyone can flourish.
Practicing within your scope means your own continuing education, too. Listen to disabled people, and never stop learning. We are experts on behavior; we are not experts on autism or disabilities. Remember to be humble, and listen to your clients, however they may be communicating. The learners come first, but everyone needs a team.