The autism chasm – medicalised words versus neurodiversity concepts; and dated paediatric processes. When will we reach a level of understanding?
It’s no surprise there’s some confusion and frustration between the neurodiversity proponents and the parents of autistic children going through assessment.
As an autistic adult who supports the neurodiversity concept, and a parent of a neurodivergent child, this author regularly witnesses a gaping chasm.
The neurodiversity supporters, who are often autistic adults, or parents whose kids ALREADY HAVE a diagnosis of autism, are sometimes further along their journey of education and awareness than many parents of children undergoing assessment. That’s because the language of the clinicians and ‘experts’ in the parents’ lives (e.g. school SENCOS, teachers, Local Authority spokespersons, paediatricians, etc) is DIFFERENT and DATED.
Monotropism and autistic inertia
Neurodiversity proponents use concepts and language like ‘monotropism’ (atypical patterns of attention that describe issues that doctors would call hyper-focused interests, or obsessions – source: www.tiny.cc/DMurray); ‘autistic inertia’ (to describe issues that doctors would state as including executive function); and words like ‘traits, aspects, facets’ etc, to describe common autistic features; meanwhile, Drs, use medicalised words like ‘symptoms’. Most famously, neurodiversity proponents describe a ‘neurology’, or at worst a condition, while Drs use the word ‘disorder’.
Autism pity memes or ‘warrior mom’ memes
Head on over to social media, and neurodiversity groups discuss issues like monotropism and autistic advocatism. Meanwhile, on the parents’ support groups, families and carers may post about how their son’s ‘strange noises’ are irritating; why their family dinner was a disaster because the child was ‘unbearable’ (read: overwhelmed); or a ‘pity meme’ or ‘warrior mom’ meme about bringing up an autistic child. (The two groups aren’t mutually exclusive – there are many, many parents learning about neurodiversity on these groups and pages, and many, many helpful individuals who support the neurdiversity paradigm helping out the parents on their support group pages, e.g. with info about supporting the kids in question.)
The thing is, we as parents can’t get away from the medicalised language. It’s how our kids (and ourselves) are diagnosed with autism. It is clear why parents at the start of their journey follow the terminology that their (often outdated) doctors use. It’s not only all around them, it is a REQUIREMENT to understand it, and use it when conversing with the so-called experts surrounding a child. No matter how many neurodiversity articles you read and absorb, the dated phrasing is around you at every turn, if you’re within the NHS assessment system, or British social and local authority pathway (UK-centric).
In the course of just two days, I recently had a couple of enlightening experiences (again, this is UK based). A paediatrician told me he could only recommend onward neurodevelopmental assessment for a child if indicative signs were pervasive across all periods, and were witnessed by him at the child’s FIRST paediatric meeting. Have these doctors not heard of autistic MASKING? Literally 10 minutes (which is the time the Dr spent with the child directly, as opposed to with the parents) in a room, and a Dr can decide ‘no signs of autism are apparent’ in a child, and discharge the child, when the parents have waited many, many months to be seen? It is non-sensical.
(Families, remember – these stickler NHS paediatricians usually need to see two examples of ‘autistic behaviours or traits’ to recommend onward neurodevelopmental assessment. If the school aren’t witnessing anything (which could mean the teachers in question aren’t experienced in the field, or don’t realise that what they’re seeing represents autistic processes and traits), and the paediatrician doesn’t see anything at the first meeting, you WILL likely need further evidence. This could include private diagnosis, or presumably could even include supportive letters and evidence from other adults that are responsible for the child, e.g. group leaders or tutors. It is NOT FAIR that a paediatrician can choose not to refer a child on for assessment just because insufficient signs of ‘pervasiveness’ were apparent in the tiny window you were granted on that day.)
(Read more about children’s autism diagnosis HERE).
Haven’t they heard of AUTISTIC MASKING?!
There’s clearly a massive skills gap with some paediatricians who are generalists (e.g. don’t specialise in neurodevelopmental conditions), or have more experience of individuals that ARE autistic, but also have support needs, e.g. who present differently, with less masking. They NEED to know about autistic masking, and that not all autists display all their traits at once – and they need to stop relying on questions like ‘Does he/she hold eye contact?’ and ‘Does he/she line toys up?’, as if these are the key factors that would allow forward assessment for an autistic child.
The second experience I had in the space of those two days was that a local authority representative mentioned the ‘levels’ of autism, e.g. 1, 2 and 3. (This describes, at level 1, someone with so-called mild symptoms, who doesn’t need much support. Those with level 2 or 3 autism are said to have so-called moderate to severe symptoms, and require more substantial support.)
Autistic functioning labels
Using these descriptions (and the word ‘symptom’) is fine medically/diagnostically, as it relates to the (American) DSM-5’s description, which advises diagnosing clinicians to use the broad term Autism Spectrum Disorder (ASD), for diagnosis, with numbered sub-categories as described. BUT, no autistic adult uses these sub-categories. Neurodiversity advocates campaign for ALL such functioning labels (e.g. also including ‘mild autism’ and ‘severe autism’) to be disbanded.
Read more here – https://spectra.blog/news-views/autism-labels-and-language/
So, the parent trying to find their way along a journey where (they hope) that an autism diagnosis will allow their child support, are barraged with medicalised jargon and dated views on autism. Yet, as they try to self-educate about modern concepts of neurodiversity and neurodivergence, they are faced with yet more language that is confusing, and is the opposite of what their so-called experts use. (Remember, the experts are bound by law and the jurisdictions of their diagnostic manuals.)
The neurodiversity proponents have it right
What’s the answer? In this author’s opinion, the neurodiversity proponents have it right. Their concepts about supporting difference (not disorder), and of celebrating the benefits of neurodivergence along with recognising the challenges it may bring, are no-brainers. Of course it makes sense. But the educators and ‘experts’ are still on their own journey. They’re surrounded by medicalised textbooks and training courses. Some had next to no training on autism in the first place, and may not have had much exposure to autistic individuals who have little in the way of support needs. So education is KEY. But alongside this, it’s important to educate ourselves about the WHOLE PICTURE – the diagnostic guidelines, the medicalised jargon we can’t bear, the dated paediatricians who have no obvious understanding of what it’s like to experience the world as an autistic person.
I wrote the book ‘Autism from A to Z’ to address some of the issues touched on here. I wanted a tome that helped experts and professionals (as well as families and carers, and autists themselves) to understand some of the finer points of modern-autism thinking, from an #actuallyautistic perspective. But equally, I needed to outline the diagnostic facts, for individuals at the start of their journey. It launched at a UK-based SEN event (The Autism Apprentice’s Special Educational Needs (SEN) Information Day at The Appleyard, Sittingbourne, Kent on 20th March 2020). #autism #autismawareness #SEN #Kent
Here are a few reviews:
‘Autism from A to Z is full of information that people new to the autistic world would find extremely helpful when either discovering themselves, or supporting a loved one or client.”
EM, Kent Autistic Trust
“Autism A-Z is easy to digest – I love how its compartmentalised in alphabetical order to find areas easily. The content is the most up to date inclusive of diagnostic changes. Autists are amazing and unique and this book consolidates information and experience supporting this view point. Autists, Parents and Professionals will benefit from having a copy.”
TH, Independent Cornwall Autism Network
‘I recommend this book for anyone new to autism. Autism from A to Z is refreshingly free of ‘politics’; it simply states the facts and points the way towards further study. It is a very positive book, which promotes self-care and mutual respect for differing views. It’s a very good starting point for further study, and is written by someone with personal experience; I found myself hooked.’
LA, autistic adult
A little disclaimer – here at Spectra.blog we don’t claim to be experts about autism; the information we post here is based purely on our own exposure and experiences.
I read the recent psychology article on being ‘authentically autistic’ with interest. The current climate seems the most accepting to date, in which to be authentic in this way. The current ‘#bekind’ movement, the increasing acceptance of minority groups, and the increasing awareness of autism as a neurodivergency, certainly means this is the most accepting era that autistics have experienced, to date. But of course, that doesn’t mean it’s perfect. There is a LONG way to go, in terms of autism education and awareness, although great steps have been taken. (For example, with the recent news about the UK’s NHS mandatorily training of their staff in autism and learning disability. (Isn’t it surprising that this wasn’t in place previously!)
However, alongside this positivity, there is a flip side – for example – there are a great many individuals supporting behavioural therapy to suppress their families’ autistic traits; plenty of people who (inaccurately) describe their autistic children as ‘vaccine damaged’; and a large, ambivalent group whose paths do not cross with autism, who are unsurprisingly uneducated about the neurology.
Examining this author’s ‘authenticity’, I was diagnosed in my 40s, and as an autistic adult, my friends and family know about my diagnosis. In my professional capacity, of course I present as an actually autistic person; but it’s not something I shout about on a day-to-day basis, and yes, there are many people on the peripheries of my social experiences – e.g women I nod and smile to at the school gates, friends of friends – who do not know I am autistic. (Read about the author HERE).
Am I being unauthentic by not sharing it widely? I do not think so. I see some autistic individuals who must have quite extrovert personalities, and seemingly ‘put it out there’ at the first opportunity, e.g. chatting to random people in a queue, or letting staff members at an event or facility know they’re autistic. It’s admirable, and it helps raise awareness of autism, particularly the fact that autism is everywhere; we’re your friends, teachers, friends’ spouses, colleagues, etc.
However, that level of sharing does not come naturally to me; I’m not the sort of person to disclose personal info on a whim, unless it is relevant. And frankly, with the large group of people in the world I mentioned who are still uneducated, I don’t want to have a quick, superficial conversation with them about my own autism when I am buying coffee, or travelling on public transport. I don’t want to wear a funny T shirt with an autism slogan. I don’t see that it promotes acceptance – awareness maybe, but of what? Awareness without understanding isn’t necessarily useful. I’d welcome an actual conversation and will gladly help to educate them if they’re open to this; but a quick, transitional encounter isn’t for me.
With the people in my outer periphery of associates, of course I would discuss my autistic needs at the appropriate time, but I don’t put it out there for no reason; does this make me less authentic? Some people would say so. Likewise, I don’t advertise lots of other personal details to other people, for example my age, my religious tendencies or gender identity. I feel this situation or choice regarding sharing and over-sharing is more to do with extrovert versus introvert, then authentic autistic versus non-authentic autistic.
Here’s how I believe I am being authentic. To this author, being authentic means that the people who need to know, know about my autism. I’ve for example started an adult education course, and of course I am open there about my autisticness, which is very liberating. Although I work for myself, if I were to apply for a job within the workforce, I would definitely disclose it to bosses and colleagues. I definitely prioritise autistic self-care, and if that means not going to a social engagement, leaving a family event early, or explaining to family or friends that I am feeling overwhelmed, facing shutdown or am ‘peopled out’, so be it. As a late diagnosed autistic, I masked for years (unintentionally), it’s what we do to fit in. But now I am conscious of not masking, as much as I can, as it’s too depleting.
One of the problems with being #authenticallyautistic is that this means showing our true feelings and emotional states, as they relate to autism; and if we are late diagnosed, this is not something we are likely to have done previously. The fact we are late diagnosed probably means we have been camouflaging or masking for years, and these behaviours are entrenched. One of my biggest challenges regarding not masking is for example simply keeping up the expected levels of social courteousness when I am overwhelmed or tired. It’s usually strangers; for example the clerk on the end of the phone at your bank; the fellow dog walker; the shop assistant; the bus driver; all of the people we engage with regularly, and sometimes engage in pleasantries and small talk with. Being authentically autistic would sometimes mean I would be seen as being incredibly rude; e.g. not smiling, not looking at their faces, and refusing to talk, if that’s what my emotional state made me want to do. That’s not kind, so I ‘mask’ with them, not to make myself fit in, but so as not to upset others. So in this example, I am not being authentically autistic and showing my true feelings and emotional state, as this may upset others, and spoil their day.
To summarise, I think we should all be as authentic as possible, whatever our neurologies. Some days, that may be more authentic than others! We can only ever do our best.