Do No Harm – by On The Train With Sophie
I couldn’t agree more.
Do No Harm – by On The Train With Sophie
I couldn’t agree more.
Trigger warning: discussion of ABA, and mention of sexual abuse.
There’s something that I keep seeing, specifically on posts regarding the issue of ABA, and, as a neurotypical parent, I honestly can’t wrap my brain around it.
It’s the inability of some neurotypical parents and BCBA’s to empathize with or stretch their understanding to consider the validity of the negative experiences that MANY autistic people and parents of autistic children have gone through.
I’ve seen it on discussions on autism related message boards where most of the commenters are non-autistic professionals/parents. I saw it on a very well balanced, well written post by Unstrange Mind. I just don’t get it.
It starts like this – autistic person talks about their actual experience with ABA, normalization, forced eye contact, quiet hands, quiet body, quiet everything, etc. A parent whose child benefited from ABA (or what is called ABA but may be more floor-time-y) or ABA practitioner jumps immediately to the defensive and tells them they are wrong about ABA, with the insistent “I don’t do it this way”/”My child’s therapist isn’t like this” reaction.
Great – you don’t suck. Great – your child’s therapist respects them and understands their autism and is working to help them function more effectively in a neurotypical world. Fantastic. I’m glad for you.
How does that change what the blogger has experienced? How does that change what OTHER bloggers have experienced? How does that change what other parents have witnessed happening to their children? How does that change the PTSD that adults and children have and continue to experience as a result of what amounts to treating autism as a behavioral issue rather than a neurological difference/disability?
HOW? Your lack of suffering in no way negates another person’s experience of suffering.
Let me put this another way.
If someone tells you they were molested by a family member as a child, what is your reaction?
Do you respond by saying “well, I never molested anyone” or “well, my family members never molested me”?
No – you listen, you sympathize, and hopefully you are now aware of an issue you may not have thought about before because it hadn’t happened to you or those you love. You perhaps keep that awareness in the back of your mind so if you see warning signs, you are more able to act on/deal with it.
So why does this not happen re. ABA? Is it so sacred that it can’t be questioned? WHY?
The irony of the lack of empathy displayed by these parents and therapists is astounding. Just because YOU have not experienced it, does not mean it has not occurred. Just because you don’t do something, doesn’t mean it hasn’t been done.
Stop pretending it doesn’t happen because it hasn’t happened to you.
Stop telling people they are wrong because their experiences don’t match up with yours.
Stop, Listen, Think – then commit to making sure that this does not happen to others. If you don’t do it, make sure others don’t – call them out when you see it happen. If your kids aren’t experiencing it, keep making sure that they are cared for in a respectful manner. Make sure other parents who seek your advice know what to look for and what to beware of. Use the words of autistic people who have experienced traumatic therapy to prevent it from happening to others.
“The ones with “caregiver” stress/burnout, whatever? They don’t have the time or energy to pop on Twitter to say something humiliating about their children. Or to write blog posts filled with intimate details about their children.” Exactly
I am NOT Kelli Stapleton. Don’t call me that.
And I sure as hell hope you aren’t either. Or I have a call to child protective services that I am morally obligated to make.
I have a bipolar diagnosis. I’ve struggled lifelong with bouts of depression, anxiety, and insomnia. I’m no stranger to emotional instability. I can say with some certainty that I will never break. More on that in a bit.
I can say with absolute, unflinching, unyielding, certainty that I will NEVER break my children.
How can I be so sure?
Because I love my children. When I am feeling low, you won’t find me on Facebook or Twitter posting nasty little ditties about my kids.
Because this kinda thing? It isn’t about mental illness. It is about a selfish mother who doesn’t have an ounce of respect for her…
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Parents / adults – regardless of neurology – LISTEN to children. WE are the building blocks of their future, and their trust in us is the foundation we build – or don’t. The choice is ours.
Wow – so obvious, yet – not 🙂
I have been thinking about limits: the edges of ourselves… that place where we interface with the world. Our limits and where we set them are the control valves for our emotional, social, physical, cognitive, and sensory experience. These boundaries are the meeting place between ourselves, others, and the world around us, and they deserve our mindful attention.
I have been told I am patient with my child and with my students… that is because I use strategies to support them before I am at my limit. Let me explain…
As a parent I have often considered that with my own children it is important for me to set my limits, the place I draw the metaphorical line at a place different from, separate, and well before, my level of frustration. If the limits we convey to others are at the same place as the end of our level of…
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Love this. Every parent of every child, regardless of neurology, would probably find life much easier if we let go of a little control when it doesn’t matter. Being sensitive to our kids doesn’t mean we’re sacrificing power, it means we’re building relationship.
I was in the cereal aisle in Target, waiting for The Scientist to decide on his cereal purchase, when I overheard this exchange between a mother and her preteen son:
Mother: “James, come and let’s pick out some cereal.”
James (appears from around the corner): “But I haven’t finished looking at all the pasta. I looked at the pasta on the right but I didn’t look at the pasta on the left.”
Mother: “We need to pick out your cereal.”
James (sounding panicked, voice rapidly rising into hysteria): “But I need to look at all the pasta! I haven’t looked at the pasta on the left. I need–“
Mother: “Okay, you can finish looking at the pasta if you promise to come right back here when you’re done and pick out your cereal.”
James: “I promise.” (dashes off around the corner then returns a minute later)
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Autistic people and those who love and support them are working hard to take a stand against negative and stigmatizing messages about the experience of being Autistic. It can be exhausting and can feel like an uphill battle counter the caustic vitriol that spews from powerful organizations such as Autism Speaks.
A few weeks back, my friend, Lei Wiley-Mydske, and I live-tweeted as we watched Autism Speaks’ gross docutrauma (frickety frack, I love neologisms) “Sounding the Alarm: Battling the Autism Epidemic” which you can read about here and here.
There are films and voices and resources that are created by or involve Autistic people in an honouring way, and that give insight into the experience of being autistic. These contain important and helpful messages and information about the kinds of supports that are needed and how we might accommodate…
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REALLY interesting, and an important issue – definitely helps a parent manage their frustration to know this – and it helps us be better parents to know this too!