This has been worrying me a lot recently. The whole notions of diagnosis (or identification which is a term I prefer) through to reasonable adjustments, the concept of disability, equality, fairness – to me a lot of the issues stem from what I see as a fundamental and critical flaw in how autistic people are commonly compared to the predominant neurotype (PNT) as opposed to simply being understood within their own context. One only needs to scan through definitions and descriptors of autism to ascertain just how much judgement of the autistic person there is in relation to the PNT. Impairment in social skills? Read as impairment in PNT social skills. Impairment in Theory of Mind? Read impairment in PNT Theory of mind. The list could go on…and on – the point is that these judgments mostly seem to be a direct comparative analysis of so-called skill sets against a demographic majority – which holds absolutely no logic whatsoever. It’s akin to deciding that the lone dog in a room full of cats should be described/labelled/diagnosed as having impairments in purring, miowing, and looking aloof (slight sarcasm warning for that last sentence by the way). And before anyone gets upset, I am not suggesting that autistics are a different species to the PNT!
Of course the converse is equally the case – the PNT in the main make for terrible autistics! Show me an average PNT who has well developed autistic social skills and I’ll give you a medal (not literally – but I will be very surprised!). And yet the PNT are not labelled as impaired in (autistic) social skills – despite the fact that sitting enjoying company in total silence can be highly logical, immensely satisfying, and deeply enjoyable. The removal of ‘small talk’ can be the most glorious blessing, allowing people to have a sensible conversation without the litter of erroneous communications that bear no relevance to the subject matter. Again, the list could go on – the PNT usually lack good autistic empathy, linguistic accuracy, sensory diversity, the inability to lie, autistic logic…and so on. But are they encapsulated in a deficit-based impairment model as a result? No.
Ok – so I accept that others have written about this very thing, as have I – so I shall get to the point that has been worrying me recently. It’s this: that the autistic person’s success/or otherwise is based on PNT perception and status, as opposed to autistic potential. This scares me beyond belief, as it might mean that autistic children and adults are at a massive disadvantage just because they are able to ‘perform’ at a similar level to their PNT peers. If this is the case, then society is getting things very wrong indeed. Take the following:
A child in a mainstream school, causing no fuss, passing her coursework and exams with average marks.
An employee with no remarkable productivity but with no obvious negative issues either.
A university student, on for a below average second class degree.
One might argue that if all three of the above were autistic, it is unlikely that they would ‘qualify’ for any additional support, reasonable adjustment, application of equality laws and so on – after all, what’s the problem? Well, for me, the problem is that those individuals are being judged/assessed against a ‘norm’ – and not against their own potential. If being autistic is holding them back because of a lack of adjustment – then they are at a grave disadvantage. If, with reasonable adjustment those three could be the straight ‘A’ child in school, the most productive employee, the first class honours student – then are we not being discriminatory by not recognising this and doing something about it?
The same applies to being identified as autistic in the first place. One tends to need to be perceived as disabled in the first instance to ‘qualify’ for a diagnosis – ‘persistent difficulties…impairments…’ etc. – but compared to what? Or, more importantly, compared to whom? What if we radically changed our perception and instead asked the question – how much less disadvantaged might an individual be if we took autism into account, even if there appears to be no issue on the surface? You might be an adult who does not outwardly demonstrate a persistent difficulty in effective communication – but compared to what your potential is, you may be operating at a considerably lower level because autism has not been identified or taken into account. Surely what this means is that how we (society in general) understand and perceive autism should be vastly different compared to current thinking? If we stopped assessing autistic people in comparative judgemental ways, and instead tried to understand how their environments might be disadvantaging them in relation to their potential, we might all of a sudden realise just how many people are being discriminated against simply by being compared to the ‘norm’.
In my opinion one should not have to demonstrate disability, difficulty, or impairment to qualify either for a diagnosis, or reasonable support. If one is at a disadvantage by being autistic in a non-autism-friendly environment, then to me it’s discriminatory not to make appropriate attempts to alter the environment. Only then can we justifiably talk about equality in a meaningful way.
Autistic people deserve to be understood in relation to their own goals and potential, not those of the PNT.
24 thoughts on “Why do autistics need to be compared to the predominant neurotype all the time?”
You could certainly say that I have not achieved to the level that I should have.
At every level my lack of ability on a social level has been held against me, even when my productivity is exceptional. I have always been compared and found wanting.
I’ve said it before and I’ll say it again, I’m not a faulty version of anything, I’m a fully formed autistic.
Thank you for stating it all again. It needs repeating.
I often forget it myself and slip back into the comparisons. They are meaningless and unhelpful.
Why do some self dx peeps or super mild ones on the spectrum try to do this with us with more involved autism grr .it so frustrating at times .i had some I feel trying to one up me till I give them the Down low on how it was is for me .then they stop .why would you want to be more impaired or try to compsirec yourself to someone .like me or someone more impaired.if your not .i don’t get it .the other thing that Nt people do sometimes is make me or my friends feel like they want to be there special new autism or deaf pet .like whst I mean is some people are very interested.in some with disability.maybe they don’t no much about it .or they are new in the field .or they are just being super overly nice .it happened a couple of weekend ago with me an a friend at an autism conn .she was making us feel thst way .my friend who deaf was helping me out at my art both .but she very good at body language an the looks she was shooting me while .being polite an nodding to her as she non verble .lol after wackdoddle left lol I say to my friend in sign language wow what was that .lol .i had that happen growing up ack
I agree with all that you’ve said about being unable to reach one’s autistic potential yet not qualifying for any help. I would also add that there is often a considerably higher cost for the autistic person too, so the person who has seemed like they don’t need support suddenly finds themselves failing/in crisis. Usually that’s when the support is offered which is often too late.
This is all so true – it may not be enough to be ‘coping’ when we could be ‘shining’.
This post is just so perfect. I feel like I live with a constant inferiority complex and impostor syndrome because I don’t quite match up to those around me. I’ve so often called myself a failure over the years. I always wonder how different things might have been had I got my autistic identification, and the right adjustments and support, earlier in my life.
Yes Anna, I get so sad when I hear this. I always try to encourage people to try not to ever judge themselves against the PNT – in my view it just doesn’t work!
Thank you Luke for articulating so clearly exactly what is at the cause of so much stress, anxiety in daily life, and what scuppers our life chances in the long term.
I love your paragraph on what crap autistics PNTs make!
I have so many skills and areas of autistic competence but have spent my life feeling like I’m failing because I make a crap PNT. I wonder if we succeed only when our skills sets share significant overlap with PNT and can be judged by them as good?
Very good point Sonia, thank you for that
I like this … it makes a lot of sense. Coming across the attitude of ‘it would all be better if you could just try to be more like me’ is a common problem. Thank you.
Thank you Caroline, and I totally agree!
Agree wholeheartedly! It would be more profitable to concentrate on autistics, finding not only differences between us but also similarities.
Usually questionnaires and surveys used are those that have been designed to investigate aspects of the Neurotypical population. As such they are not suited to an autistic cohort and fail to take into consideration particular and frequent dispositions manifested by autistics.
There seems to have been not only little recognition of mature age autistics, i.e. those over 50 years and late dx and no interest in investigating the development of skills acquired over years of experience.
It is as if there is a reluctance or refusal to recognise autistics as a legitimate cohort instead of seeing us as defective NTs. Autistic centred research is needed instead of NT centred if there is to be any chance of understanding autism and humanity in general.
Agreed the over 50’s and the nearly 50’s too many of that age grew to know their autism through their children or grandkids diagnosis. Then an only then understanding their place in a world that they didn’t feel a part of their whole lives..
They have a lot to give ‘re knowledge
I totally agree with you on this point David. My late diagnosis (at 54, I’m now 61) came about due to my grandsons diagnosis.
Great piece, the stand out part that hit home with me is .. the average an managing.. I am that guy, it has taken 48 years to reach the dizzying heights of average. And I look back at a life time of missed opportunities, lives i could have led i see forks in the road of life’s past choices that was barred to me that I couldn’t take..
That’s the price of been Autisitc in PNT focussed world. Importantly I know i didn’t fail I know it’s not me, but saying that I still at times blame myself its
But the reality really is that the PNT worlds judgment an barriers put me in the deficit box, when I am not.
I logically accept I can’t change my past and I must go forward from where i am. Beating myself up for failings an all those lost opportunities, won’t fix a thing, it will just hurt me more & i hurt enough. So I don’t; but my reality is that I have to work five times as hard as a PNT to hold that average spot. Everyday is a challenge and energy draining, some days I don’t have the matches to burn to get me through the day (lovely analogy thanks Luke).
So I burn emotional energy I burn my lil stores of contentment . It’s so bloody hard holding on to average.. if only the PNT world was an Autistic world too!
That’s the battle we have to fight to change PNT thinking to change PNT barriers an standards designed for only PNT’s that hold us back.
I don’t want others to reach my age an look back with regret at a life littered with chances lost because of the PNT worlds rigid thinking, rigid views & rigid barriers..
For my three teen AUT kids & for all the others younger teen an older too; we can’t allow autistic lives to be average or less than average or crushed by this PNT world..
We have to be not average but exceptional at clearing a path of change.. every where and any where we are!
Again apologies for the very late comment/if you are no longer interested in this topic (I am reading a lot of ASD books at the moment and it is generated quite a lot of questions).
I read The Autistic Brain and it appeared that there was a major flaw in the neuroscientific research- there was an inherent assumption that the NT brain wiring was the ‘correct’ one and that an ASD brain was deviation from that norm. However it appeared to me that no assessment of the NT person had been carried out to determine what level the NT brain performed at.
The danger is also that the assumption that the brain is NT-
Knowing you are on the spectrum requires noticeable levels of difference: people may assume that they are performing in the so-called normal way/attribute their issues to mental health (particularly women with a Bipolar/BPD diagnosis).
I think interesting research would be comparing ASD people who have adapted to living in the NT world both from a psychological/social model and a neuroscientific one. This would potentially provide an evidence base for models tailored to Aspergian profiles where adaptations may be psychologically damaging.
I have recently been involved with researching Autism Spectrum Conditions through my work. I have no knowledge or expertise of ASC, however I feel an expert in living with it. I am an NT with the rest of my family being identified with a label of ASC. I have read various publications on the subject, but I don’t recognise some of the traits attributed to people with ASC. The main issue I have is the deficit lead negative prognosis of people I view as extraordinary not disabled. Over the years my family and me have struggled and endured judgement, discrimination and misunderstanding for over 30 years. I now need some help and support to further educate and inform others, especially professionals supporting people with ASC. After 30 years of living in a cross cultural world, I have found very little has changed for my family (now third generation) and others in gaining support or recognition living in a PNT world. Can any researchers supporting people with ASC please make contact?
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Reading your book ”Autism and Asperger Syndrome in Adults”.
You are yourself autistic, aren’t you? I am.
Please email me if you are interested in writing a forward to the book I’m currently writing which is related to autism, thank you and much appreciated!
Good, this needs to happen. All individuals that have anxiety, depression, autism, etc need to have their needs met in school. Someone needs to figure out how to get every single child the services they need to be the BEST they can be.