Autism acceptance – false dichotomies and the damage done

May 15, 2019reThinking Autism blog

When discussing autism—especially on the internet and in the media—there are way too many people who recklessly engage in false dichotomy. It’s a kind of extremism that gets us nowhere, unless you consider paucity of nuance and rampant name-calling a valid destination.

One of the most prevalent false dichotomies, one that parents like me have been on the receiving end of a great number of times, is this:

EITHER you believe that your child’s autism is lifelong, a fundamental part of who your child is and therefore love and accept your child OR you are seeking interventions that might diminish or cure the autism symptoms, revealing that you don’t believe that autism is necessarily lifelong or integral to who your child is and therefore you are unaccepting of your child, perhaps do not even love or deserve your child or see your child as fully human.

The choices are love and acceptance OR treatments, representing something much less beautiful than love.

It’s important to note how people with autism or autistic people—however they prefer to identify—are sometimes treated when they align themselves in any way with the idea of treatments that might provide relief from symptoms of autism. If they suggest that a cure should be an option for those people who are severely disabled and/or would choose a cure for themselves they are called self-hating and worse.

Some examples of this sort of use of false dichotomy:

“Autism doesn’t need to be treated. Autistics need acceptance and support from their loved ones and society.”

“People who accept us would much rather see us happy and stimmy and obviously different than miserably quiet and blending in. Acceptance is about us belonging, as we are, to the ranks of fully human people.”

“As a parent, you need to be aware that ‘charities’ like this one [i.e.Thinking Autism] don’t see your child as fully human and are more than happy to exploit your worst fears.”

“Neurodiversity advocates are asking to be seen as human beings, inextricable from their autism.”

“I get it, parents want the best for their child. But the best thing for them (and the parent) is to accept them and their Neurodiversity”.

“Autism does not need a cure. As an autistic person I encourage parents to embrace and accept their child, not put them through stressful and damaging therapeutic interventions.”

“The only autistic children who grow up sick and miserable are the ones with parents who demonize them and think there’s something ‘wrong’ with them for having autism. Our suffering is caused by emotionally abusive fuckwads like you, not autism.”

There are thousands more, but these capture the gist of much of the use of false dichotomy in terms of acceptance.

The reasons for the attacks on my suitability as a parent are not really because I’m unwilling to accept my son—because I most certainly do—it is much more about the fact that I’m not willing to accept someone else’s belief of what autism is.

Demons or saints

In terms of how parents are portrayed in the false dichotomising, one of the most annoying platitudes is that “only special parents have special children.” Parenting a child with a disability does not somehow elevate you to the status of special or saintly. You’re still just a parent, and you could be wonderful or awful or somewhere in between or both, depending on the hour. Parents of human babies are human themselves, which means both love and imperfection tend to rule.

The other side of this dichotomy is the demonising of parents, portraying them as unloving or at best hugely misguided. Some people believe so strongly in this dichotomy that they will send emails in which they fervently hope for the death of your child, or even all of your children, so that you (or more accurately I, as I have received these messages) will finally learn to accept your (my) child.

No one can deny that in this world there are terrible parents and that some of those terrible parents will have children with autism. Those are simply the odds. But, suggesting that parents don’t see their children as fully human or deserve to lose their children because they are seeking to reduce the disabling symptoms of autism is as inaccurate as saying that all parents of kids with autism are special. As well, there are likely adults with autism who are self-hating—again, the odds would seem to make that possible—but to accuse someone of self-hatred because they endorse a person’s right to be relieved of the disabling symptoms of autism is the opposite of reasonable.

Today’s ABA: Neither miracle or abuse

I want to mention ABA, a common target in the false dichotomy-plagued world of autism. ABA therapy is often called abuse and violence but also portrayed as the only therapy that is proven to be helpful to people with autism. In other words, depending on who is making the allegations, you might be a horrible parent, actively participating in the abuse of your child or you are a horrible parent denying your child his or her future.

Pretty grim options, right?

Let me be clear: some aspects of ABA therapy have been abusive in the past and, while I hope not, may still be currently in some contexts. The use of aversives and leaving room for nothing but compliance are both, in my opinion, completely unacceptable.

But the ABA I know has changed from what it once was. I’m not suggesting for a moment we forget or whitewash the past, but if you are suggesting someone engage in ABA therapy or not, it makes little sense to talk about ABA as it was in 1986. Talk about the ABA available now.

My son was provided ABA a few years ago and he adored his workers. They absolutely did not demand compliance and prioritised fun, connection and kindness. They helped him communicate, explore and grow. He felt pride and accomplishment and happily spent his time with them. I wish we could access that help for him now.

Today’s ABA, on its own, is neither abuse nor a miracle. It is, like many human endeavours, only as good as the people who are implementing it and our collective knowledge. Who might benefit from ABA and how much ABA is a question with person-specific answers. Many kids with autism don’t need a single moment of ABA in my opinion. Many kids with autism have done extremely well with thousands of hours of it. There’s no dichotomy. It’s not black and white.

What is acceptance?

Let’s get back to the original dichotomy and figure out what acceptance means. Looking at a dictionary, acceptance has three meanings that might be significant to this topic: “the process or fact of being received as adequate, valid or suitable” and “willingness to tolerate a difficult situation” and “agreement with or belief in an idea or explanation”.

Going with these definitions, I can say with 100% certainty that while I seek treatments for my child with autism in the hope of lessening his debilitating symptoms, I most definitely accept him.

Not only is my son “adequate, valid or suitable”, he is incredible. He is brave, gentle, and resilient. He charms, persists, works hard. He is perfect. I am not exaggerating or bragging. I just think he is perfect. My acceptance of him is unconditional. But, I expect him to change, to grow in independence, intellect, capability. I expected the same for my other two children who I also, by the way, love unconditionally. Why would I not have the same expectations for him?

I think it’s pretty clear that we can expect change and growth from people and still accept them.

Part two of the definition is “willingness to tolerate a difficult situation”. Certainly, my son’s life is difficult. He cannot keep himself safe or engage in self-care. He has no friends who are not related to him by blood. He cannot speak more than a few words and we have found no other way of communication to help him. He has suffered a lot of pain. He rarely laughs or smiles, unlike before his regression when he did so all the time. Do I have a willingness to tolerate his difficult situation, one I have barely hinted at?

No. I don’t. I don’t want my child to have to endure difficulties far, far beyond the challenges that anyone would wish upon their child. Does that mean I don’t love him? Don’t accept him?

The fact that I’m not filled with a willingness to tolerate the many and profound difficulties that my son has to face every single day is about loving him. More to the point though, if I were willing to tolerate his egregiously difficult situation, what kind of parent would I be? The terrible one I am often accused of being. That kind.

We cannot define autism as lifelong simply because it is defined as lifelong because that’s what people assumed it must be so therefore it is. This is another logical fallacy, petition principia, often called begging the question. Is autism lifelong you dare to ask? Yes, it is, you are assured, and we know that because it is lifelong.

When autism activism becomes autism imposition

In terms of the false acceptance/treatment dichotomy, it seems that the final denotation of the term acceptance—“agreement with or belief in an idea or explanation”—is actually the one at play here.

The reason for the attacks on my suitability as a parent are not really because I’m unwilling to accept my son—because I most certainly do—it is much more about the fact that I’m not willing to accept someone else’s belief of what autism is for everyone, including my son.

When he was almost two my son went from an energetic curious child, engaging with his siblings, playing, laughing lots, talking, sleeping well, and learning every hour, to a child who suddenly could not speak, did not smile, would not engage. He was listless and profoundly sad virtually every moment of the day. He developed mysterious rashes, had dark circles under his eyes and could no longer be touched. I would sleep with him every night, but for hours he would just spin the ring on my finger. I had to remove it finally because his fingernails were starting to rip off and I developed a blister. When he did finally fall asleep, he would find his way close, cuddling into me, something he could not do when he was awake. I could list a thousand things that he lost.

This was his autism. It overcame him in just a matter of a couple weeks.

My son’s autism is not ‘who he is’

He is not ‘hard-wired’, whatever that metaphor really means, with his autism. Autism is not his ‘neurology’ which in itself is not immutable of course (but that’s another blog). He was not born with it. He was perfect and beloved before his autism and continues to be perfect and beloved after regressing into autism. But his perfection and the love we feel for him is unrelated to whatever happened to cause his many serious struggles that have been labelled autism.

According to everything I initially read when he regressed, autism was lifelong and he had been born with it. I was left to consider how I might have imagined all of that social engagement, communication, flexibility, and other distinct “symptoms” of not autism. How my entire family had the same collective hallucination of him not having autism. The videos showing the exact “symptoms” that would preclude any sort of diagnosis at all were not to be trusted according to the official definition of autism as lifelong, a definition built on the twin scientific principles of conjecture and assumption I might add.

False dichotomy dictates that as a parent I am to dismiss the person my son was for 22 months and pretend that the exhausted, heart-crushingly sad child suffering extreme sensory processing problems, who could no longer learn and seemed incapable of knowing even the tiniest fraction of the happiness he used to was the only person we had known. Were we supposed to pretend that the person he was before his regression wasn’t really him—that the first part of his life was really just some kind of latency period, waiting for his true autistic self to arrive (along with myriad comorbidities)?

Looking more closely at the term acceptance in an autism-specific context, the Autistic Self Advocacy Network states: “Acceptance means doing everything you can so that your autistic child will grow up into the best autistic adult they can be.”

That message is lovely in some ways, but also conflicted, inaccurate and, yes, implying false dichotomy. I know a lot of parents who have done everything they can for their autistic children who are growing up to be adults, but not autistic ones. Their children have lost all their former autism symptoms and no longer meet the diagnostic criteria for autism. Some of those kids were considered to be “born” with autism, not regressing like my son. Does that make those parents even worse than me? Or, is the reality this: who these children truly are is separate from the autism they no longer have.

The fact that children regress into autism and children once diagnosed with autism end up being adults (or just older children) who don’t have autism fails to neatly fit into the assertion that acceptance of autism as lifelong for everyone is an action that characterises love.

Your personal experiences don’t get to dictate the experiences of others or trample on their autonomy. I am not going to lie about, or to, my son because I’m accused of being a bad parent, or an ableist curebie or any other insult. His experiences, ones that I witnessed firsthand and experiences that are now widely documented in the research as relatively common, defy the assertions that autism is both lifelong and that autism is ‘who’ he is.

False assumptions and logical fallacies – ‘begging the autism question’

We cannot define autism as lifelong simply because it is defined as lifelong because that’s what people assumed it must be so therefore it is. This is another logical fallacy, petition principia, often called begging the question. Is autism lifelong you dare to ask? Yes, it is, you are assured, and we know that because it is lifelong.

Behaving as if the experiences of these children aren’t important because doing so doesn’t accord with assumptive parameters of a poorly defined disorder is a seriously shabby thing for any adult to do to a child, whether you’re writing for Twitter, a website, a journal article or diagnostic manual.

Furthermore, pretending that the experiences of these children aren’t real to suit some kind of ideological framework moves beyond seriously shabby to prejudicial. Once more, how is it okay for people to do this to others?

People need to stop conflating the two very separate acts of accepting one’s child or oneself and accepting a stranger’s experience of his or her own life. If an individual’s experience of autism is as lifelong and an integral component of who they are, that’s great. By all means, everyone ought to own their life and make decisions about what it means. Please, yes, advocate for understanding of and respect for your decisions, your experiences, your autonomy.

But—your personal experiences don’t get to dictate the experiences of others or trample on their autonomy. I am not going to lie about, or to, my son because I’m accused of being a bad parent or an ableist curebie or any other insult. His experiences, ones that I witnessed firsthand and experiences that are now widely documented in the research as relatively common, defy the assertions that autism is both lifelong and that autism is ‘who’ he is.

It is arrogance to insist that people who are listening to you must agree with you, especially when the evidence in front of them directly contradicts what you are saying. Listen and accept are two different verbs for a good reason. I’m writing this in the hope that people will listen. I’m trying to be detailed, clear and cogent in the hope that they will accept.

In the context of working towards better lives for all people with disability, just all people in fact, false dichotomies are foolish and damaging. If you are slinging logical fallacies around when discussing anything autism, it really doesn’t matter where you are coming from in your beliefs, you are not helping.

The spectrum of autism is vast and we cannot overlook the fact that a diagnosis (I am using that word guardedly) is based only on observation of behaviours and is far too commonly applied without benefit of differential diagnosis. Given that ludicrously imprecise starting point, we must work from nuance and specificity to create the small, incremental changes and understandings that are the building blocks of real advocacy and positive change.

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