Hear me out, before you click away in disgust. I’d like to declare a conceptual “truce” with autism researchers. Way too much energy goes into rebutting and refuting often-well-meaning individuals whose stated (or implied) goals are to relieve the suffering of (autistic) humanity. I think we’re in the midst of a needlessly tangled mass of confusion which can be addressed and made right by a basic change of terminology – which in fact signals a refinement in how we approach autism in general.
This proposal is about more than semantics. It’s about the very roots of how we conceptualize autism, and where we put our energies in addressing its challenges and redeeming its experiences.
A few weeks ago, I was in discussion with several autistic women, and one of them brought up the idea of “curing autism”. Another one of the women was not amenable to that word at all — and I mean NOT. She got so upset, she almost left the conversation, and we spent a fair amount of time trying to help her calm down.
She did calm down, eventually, but the detour in the conversation was a stark and startling reminder of just how charged the concept of “curing autism” is for many people.
I’m not comfortable with it, either. I consider myself fundamentally autistic in nature. My family is all quite “spectrum-y”, and I grew up in a world where many people met the DSM-IV criteria for Aspergers. They’d also meet the DSM-V criteria for Autism, if anybody looks… but since that’s the “normal” way to be in that part of the world, nobody thinks to wonder if it might be “disordered”.
I don’t consider myself disordered. I’m just of a different neurotype than the other 67 people around me at any given point in time. When I view them honestly and without the customary masking, my well-concealed traits and qualities align neatly with the standard-issue descriptions associated with Autism. And when I talk about my life, I synch up nicely with the descriptions that other autistic folks provide of their lives – in both positive and negative respects. Fundamentally, I am Autistic. I am part of an Autistic community and culture. And like so many others on the spectrum, I wouldn’t change it for the world.
So, when someone talks about “curing autism”, it sounds to me like they’re trying to get rid of me… to eradicate the very qualities that bring vibrancy and enthusiasm to my life, as well as imbue me with the mind-boggling (to non-autistics) ability to get a whole lot of sh*t done in a short period of time, and do it better than just about anybody (except an autistic person) would reasonably expect.
Yes, autism can be challenging. Living in a non-autistic world as an autist is a pain in the ass, much of the time. I don’t see why I should have to be “fixed” or “cured”, when the rest of the non-autistic world doesn’t seem to be doing that fabulous a job of stewarding the planet and caring for its inhabitants. Why would anybody want to “fix” a collection of traits and abilities which have actually moved humanity forward?
To be honest, it feels like all that autism-cure research and the people producing it are “out to get me”.
Maybe I’m just being literal — it wouldn’t be the first time.
Then again, maybe that’s exactly what non-autistic researchers and scientists are hoping to do: cure autism, stop it at its root, weed it out from the general populace, so countless parents, families, teachers, and other allistic members of society needn’t be discomfited by our existence.
Here’s the problem, as I see it — they’re not really trying to cure autism. They’re confusing symptoms of social/biological/cognitive dynamics with a fundamental quality of life. They’re doing the equivalent of trying to change fair skin so it doesn’t burn so easily in direct sunlight… relieving suffering for “ginger” people with the palest of pale skin who suffer a lot from sunburns. That may be a noble goal, but some people are simply born with fair skin, and they like it. Or, they may not like it so much at times, but that’s what makes them who and what they are.
There are common-sense ways to address getting sunburned all the time. Like A) staying out of the sun at peak hours, B) covering up, and C) putting on some danged SPF-30 sunscreen. You don’t remove someone’s skin, or chemically change it, so they don’t burn. That’s a ridiculous thought. And yet, that seems the equivalent of what autism researchers are aiming for. They seem to want to get rid of my autism forever — the equivalent of flaying me alive “for my own good”.
Or do they want to get rid of autism? I’m not so sure. They want to get rid of suffering, and they believe that autism is the cause. Hmm. I suspect many such researchers are confusing their concepts. They’re thinking that extreme symptoms like rocking in withdrawn silence and refusing to interact are autism. They’re mistaking behaviors like stimming, intensely focused interests, and social “quirks” for autism itself. They’re operating within an elaborate network of reinforced false equivalencies that are skewing their understanding of autism and conflating our autistic ways of being with a widely varying mental disease.
They just don’t realize it.
And because everybody in the non-autistic autism-research community is agreed on their fundamentally flawed concept of autism (or they’ve agreed upon the general use of the admittedly misunderstood term for their common purposes), they’re reinforcing its misuse through practice, discussion, and funding. They’re inadvertently perpetuating cycles of counter-productive, highly problematic (some would say abusive) attitudes towards autistic people which not only harm us, but also prevent those scientists from even understanding what it is they’re researching.
But I think there’s a different way to conceptualize their work — and if they shifted their own frames of mind (and terminology) about what it is they are really doing, we might be able to make some headway in terms of relieving the suffering of so many autistic people and their non-autistic loved ones.
Rather than trying to understand Autism… What autism researchers are actually doing is trying to understand the root causes of the suffering that autistic people experience.
They’re not researching the Causes of Autism. They’re researching the Causes of Autistic Suffering.
What’s more, they’re looking for ways to mitigate those causes, so we (and everyone around us) can lead happier, less painful, more productive lives. They’re hoping to find the cause for our behaviors and symptoms, which are just that — behaviors and symptoms.
Those signs of distress and discomfort — the meltdowns, the blocking out of any human contact, the extreme repetitive behavior which may actually be self-harming in some cases (and yes, I’ve done it — from a young age, I used to be a head-banger and hair-puller who scared the crap out of my mother more than once)… I do think it would be useful to better understand how to avoid and manage the causes of those things. I do think it would help a lot of people on (and off) the Spectrum, to get some data about what eating a certain diet does to your highly sensitive system. I do think it would be useful to understand the biochemical nature of meltdowns and find ways to “nip them in the bud” before they turn into full-blown blow-outs which reduce many people like me to a faded version of themselves for days (even weeks) afterwards. I do think it would be useful for parents to better understand what prompts their children to withdraw and/or not speak, so they can A) give them the space to do what they need, B) not worry so much about it, and C) help their kids have more self-determination in how they interact with the world and develop into happy, healthy adults.
When we stop talking about “curing autism” and start talking about “relieving autistic suffering”, the research takes on a whole new direction. When we stop using the cognitive shortcut “autism” and start describing the exact problematic behaviors and traits that are experienced as a result of environmental, physiological, or social factors which form the substrate of their autistic distress, we may actually start having productive conversations about autism — and the dollars sunk into all that research might actually get somewhere.
Personally, I think the term “autism” is a red herring. It’s a conceptual catch-all that means whatever people want it to mean. It’s like the word “crazy”. People use it all the time, to avoid being more specific about what they really mean. Rather than saying “That man was deeply frustrated by what was going on, and his behavior became erratic and unpredictable in ways that scared everyone around him,” people say “That guy went crazy.” It’s quick, easy — too easy — and everybody thinks they know what it means. But they don’t. Not really. And that choice of words does unintentional (iatrogenic) harm.
Likewise, with autism, people talk about “children with autism” when they really mean:
- autistic children who withdraw from sensory stimuli in ways that non-autistic individuals don’t understand
- autistic children who experience physically, mentally, emotionally intense episodes of uncontrollable outbursts in the face of sensory overwhelm
- autistic children who repeat words and motions to self-soothe in the face of sensory and cognitive overwhelm
You could argue that “autistic” covers all of the issues above, but that generalizes the situation too much. It chooses to focus on something that can’t (and shouldn’t) be changed — the autistic nature of the individual, making the individual essentially responsible for their own distress. More problematically, it glosses over the impact of external influences which actually CAN be managed and mitigated and totally misses the opportunity to understand the fundamental nature of the challenges faced — as well as the myriad ways those challenges can be productive and effectively addressed.
But when we change the words we use… well, that changes how we think… and how we approach the situation.
Here’s a quick example for you — below, you can see what a conceptual difference a simple change in terminology can produce. I’ve pulled the abstract from the paper Evaluation of Intestinal Function in Children With Autism and Gastrointestinal Symptoms and changed some key terms — substituting references to “sensory distress” for blanket-term “autism”. I’ve also removed the biochemical references for readability. You’ll get the point.
Objective: Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to children who are on the autism spectrum. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 children with autism and 50 nonautistic individuals with gastrointestinal symptoms.
Results: Some children with autism had mild levels of mucosal inflammation on intestinal biopsy. <snip>
Conclusions: The present study supports the observation that children with autism who have symptoms of gastrointestinal disorders have objective findings similar to children without autism. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying children with autism who have atypical symptoms.
Objective: Alterations in intestinal function, often characterized as a “leaky gut,” have been attributed to autistic children who withdraw from interactive contact and/or engage in repetitive, sometimes self-injurious behavior, as a result of heightened sensory distress. Disaccharidase activity, intestinal inflammation, and permeability were analyzed in 61 autistic children with behaviors related to extreme sensory distress and 50 nonautistic individuals with gastrointestinal symptoms.
Results: Some autistic children in sensory distress had mild levels of mucosal inflammation on intestinal biopsy. <snip>
Conclusions: The present study supports the observation that autistic children reacting to sensory distress who also have symptoms of gastrointestinal disorders have objective findings similar to non-autistic children. Neither noninvasive testing nor endoscopic findings identify gastrointestinal pathology specific to autism, but may be of benefit in identifying autistic children in sensory distress who have atypical symptoms.
To me, that second abstract reads very differently. And the results of such a reworded study might actually prove useful when thought about in different terms. Whereas the generalized designation of “autism” doesn’t shed much light on the precise nature of the issues, or the interconnected cause and effect, being more specific about exactly what’s at stake does serve to enlighten… not obscure.
Again, autistic reactive behaviors and sometimes disturbing traits are not autism. Rather, they can be signs of autistic suffering — something that most of us would like to alleviate.
I firmly believe that a relatively simple conceptual jump towards greater specificity in what exactly is meant and what exactly is being studied could align us, not continue to divide us.
Some might say it’s just a different choice of words.
I say, it’s a gateway to a whole different way of conceptualizing autism research — and a bridge to actual progress that can involve a whole lot more collaboration… not to mention productive results.