Neurodiversity explained (by someone much better at it than me!)
When I went from walking to wheelchair quite suddenly in three short weeks in January 2012 which finally got me diagnosed with hypermobile type Ehlers-Danlos syndrome (hEDS) at 45 under the old criteria (I was much bendier then), I never dreamt I would be diving down the rabbit hole of autism also.
But as a newly minted support group leader in Oregon who started off meeting with many patients one-on-one in the early days, I kept finding everyone was either on, or related to someone on the autism spectrum. (This included the old diagnosis of Asperger’s at that time in 2012-13.)
I didn’t think much of it the first couple of times someone brought it up. But by the fourth and fifth times, well, I sort of couldn’t ignore it any more and decided to do a deep dive and try to wrap my brain around it too, so I could learn to support it better.
I also met a young autistic woman on a paratransit bus one day who asked me why I was using my crutches and when I told her briefly that I had loose joints, to my surprise she asked if I had EDS. We connected, and as I got to know her, it was clear she was quite hypermobile also, as well as her mom and sister, though none were diagnosed with EDS yet. Just several comorbidities iuncluding… autism.
So down the rabbit hole I went, eager to start to understand this extremely varied thing called autism.
I of course stumbled on the most well known authors and titles, including the works of Temple Grandin (who I feel could be an older sister), and Tony Attwood among others. I also started actively seeking out works about Aspergers in women, i.e, “Aspergirls” and found more kindred spirits that way.
I also slowly started to find #ActuallyAutistic people on Twitter and followed them too, which was most eye-opening and helpful. I learned to not follow Autism Speaks nor to light it up blue. And I kept meeting patients in real life at EDS and MCAD support group meetings.
I had multiple people ask me if I was also autistic along the way. I’m not diagnosed yet, no (at 52 as I type this in June 2019), but I have strongly suspected for some time I would have fit what some used to call “high functioning” Asperger’s.
The diagnostic label of Asperger’s was taken away in 2013, and the bar of entry raised a little, and now all are diagnosed with just one of three “levels” of autism, if at all. And actually autistic people would prefer to ditch the high and low functioning labels also.
Not only did the definition and view of autism change depending on who was writing (Temple Grandin, Tony Attwood, and various parents, carers and psychologists for starters, followed by Amy Sequenzia, authors Steve Silberman, Samantha Craft and Ido Kedar and other actually autistics later).
This latter label is intended to apply to parents and others who were or are operating from a place of fear, that autism is a disease you can catch or induce from toxins (e.g. the long debunked vaccine myth), and needed to be either prevented, and if it wasn’t, then it needed to be “cured” so your child appeared and functioned as normally as possible. (Read: could mask and pass as neurotypical or NT.)
They describe autism as a neurotype, and contend that it’s not autism itself they suffer from, but the lack of acceptance of it by their parents and society at large that generates suffering. Along with some comorbidities which can be treated at least, if not cured also.
And while not a common view in the mainstream media yet, I had to admit they had a point.
The Parents Mostly Medical Point of View…
But yet, I could also see the point of view of the stressed and anxious parent with a severely affected non-verbal child who might be acting out in self-destructive and other stressful ways that were hard to manage while trying to hold down a full-time job in our capitalist society.
E.g. screaming, biting, kicking, running away (eloping), or even smearing poop on the walls sometimes. Yikes! These parents were struggling to cope with their children’s behaviors with little to no support and ABA-centric sources were providing the only “hope” in the medical world they consulted and were initially directed by. So they felt their voices were being erased too. (Quite the impasse!)
But the longer I studied and read, the more I realized these challenging behaviors did and do not happenfor no reason. That is, they did not happen in a vacuum. Just like dogs don’t bark for no reason, we (people) don’t stim, cry, melt down, bang our heads, cut ourselves and more for no reason.
Even if it’s hard for you to uncover or understand sometimes. You just have to use a little… imagination! And have some patience and faith that you will work out the drivers of the harmful behaviors in time (just as we do with our non-verbal pets right?). And quit worrying about what “society” thinks of yourself or your children meanwhile. (Drop the fear.)
Letting Go of Fear…
I continue to follow several actually autistic people, including some non-verbal ones on and off line and read them at length. And am starting to see and accept the more respectful and love-based “social” model of autism they prefer, to the more fear-based “medical” (psychological, really) model you are still most likely to encounter in the main body of literature and mainstream media and medicine still.
As they like to say, “Nothing about us without us!” I think that’s a fair request, don’t you? (I have sure felt spoken for and over through the years myself.)
This led me to the “neurodiversity” movement as represented in Steve Silberman’s book “Neurotribes”, which suggests that autism itself is just a “neurotype”, just like you might be right or left handed, for instance. I.e, a way of being based on one’s inborn neurology that can’t be changed, along with a host of comorbidities that might be addressed separately, yes.
But the parents kept pushing back saying (I’m paraphrasing), “you don’t know my child, they are much more severe than you lot”. Assuming incorrectly that anyone who could type so eloquently online must be verbal and pass as neurotypical. (This isn’t true.) And leading to some very heated encounters on the various social media platforms where both groups have emerged with loud voices, flinging verbal shots from their entrenched sides.
And I kept struggling to square this circle, and bring the two sides together, without triggering or greatly upsetting either one. They both had very valid points: the autistics had every right to not be forced to do or consume things that caused them mild to severe distress,. Nor to just be infantilized, or described as problems to be solved or “cured”. (Not so great for your self-esteem, to just feel like a burden to your family, or inherently defective or “missing”. Think about it.)
And the parents had every right to make sure they and their kids stayed safe and well by keeping them from self-harming, and running away and toileting properly etc. Plus making sure they had a safe and stimulating place to be as they aged out of the school system and their homes. (This is a societal problem we all need to address, really. I’m personally all for Universal Basic Income myself.)
What’s a new writer in the field to do? How could I describe autism so it validated both camps? I felt like I was touching the third rail of a subway system every time I dipped in, it felt so contentious.
I felt it was so well written, and did such a great job of bridging the gap, that I asked if they minded my sharing it with the wider world (you all), beyond just their Patreon subscribers. They agreed, and after a little negotiation, I’m very pleased to share the following wonderful post with you all that explains the autistic POV for parents and allistics better than I ever could! And begins to show a way to bridge these two cultures. (No easily lift!)
I strongly urge all to find and follow them on Patreon here:
Neurodiversity does not deny your severely disabled child needs support
Chris Breedt 2018
In the group I moderate we have tried to explain our take on this carefully.
For us there’s autism, and then there’s the exceedingly common comorbid health problems that coexist with it.
Each trait in the autistic diagnostic criteria can occur in other disorders. They are not unique to autism. So the pathological traits – the suffering aspects of the experience of autism – is to us, not really autism. Each of those disorders can be named independently, and treated as such.
But the thinking style, the habits of cognition that set us apart from neurotypical people and allow us to get along better with other autistic people than with non autistic people – that’s our identity. That’s what we mean by autistic.
Many in our community have benefited from this perspective – and that includes kids that would be classed as severe autists.
We focus on enabling health interventions. We look at ways to help the nonverbal communicate, or the sensory sensitive to reduce their suffering.
We educate parents on how to approach engaging with their kids so that what could have been a deep lack of understanding and thus total frustration and suffering for the family becomes more like the business of bridging a gap between cultures.
We do educational drives to inform people about the high incidence of Potassium and Magnesium based channelopathies that cause sensory processing disorders, Ehlers Danlos Syndrome or the common incidence of PANDAS. These all occur far more frequently in Autistic communities, and cause a large amount of the suffering we see.
When a child starts spreading faeces on a wall, there’s pain of some sort here, be it physical or mental, and we believe that such a thing should not be left to be just because it can be explained by the diagnosis of autism. We have not found a case where a child does something like that where, once we really stopped applying neurotypical values and thinking to the situation and tried to bridge the gap in perspective – a cause wasn’t found and the problem remedied.
We facilitate the acquisition of communication devices, and we expose the writing of non verbal/severely dyspraxic autistic people who speak about the life interventions that helped them best integrate and become more independent.
We advocate for the right to BE autistic. That’s the right to fail to make eye contact, or the right to flap in public. The right to choose text based communication as your only means of communication. The right to refuse to learn to speak because speech causes you suffering.
The right to require that things be explained explicitly and not inferred. The right to work in a modified environment that doesn’t gloss over our unique bodily needs. The right to be educated in a format that doesn’t interfere with our development. The right to be introverted and uninterested in conventional social engagements.
The right to BE different. To HAVE unique needs.
It’s not that we’re saying that there’s not extremely urgent need for support for families with autistic children. [Emphasis Jan’s.] We’re saying these accommodations shouldn’t be viewed as medical interventions or charity.
They should be routine, normal, the norm. They should be available to ANY person who needs them, not just people with diagnosis. We shouldn’t need to fight and struggle just to live.
Until we stop seeing ourselves as outside of society, society will not provide for us. By redefining Autism as an identity, we can put pressure on society to acknowledge that the way that our needs are being excluded represents discrimination of the grossest kind.
By becoming more than a pathological patient population and asserting ourselves as a people with our own culture and belief systems we create a framework for standing up to the majority and demanding true inclusion.
I hope this post helps a handful of allistic carers and parents to start to see the autistic POV a little better, much as it did for me. Everyone needs and deserves better support and understanding, both autistic people and their parents! (Some of whom are also autistic by the way.)
Thank you for reading and working to bridge the cultural divide with us.