STIGMATISING MISCONCEPTIONS ABOUT AUTISM
STIGMATISING MISCONCEPTIONS ABOUT AUTISM
A NEURODIVERSITY HIGHLY MISUNDERSTOOD & HIGHLY UNDERDIAGNOSED
By Lucas Voclere
Disclaimer:
I aim in this blog to call out some of the huge misconceptions stigmatising autism, - specifically the autism formerly called Asperger. I aim to call out a system that doesn’t understand autism well enough and underdiagnose autistic individuals, partly deliberately & partly unintentionally.
When I say “a system”, I mean the system in place to assess & diagnose autism in the occidental world, but I do intend to call out more widely all fields where autism is mentioned/described/explored, -whether in clinical or mainstream ways.
The statements below have been built over & through many years of personal & professional experience and acquired knowledge; - relating mainly to the experience of autistic people in France & the UK, but also over Europe & North America.
I have thought over a long time and on many occasions about those elements that I discussed in depth with many autistic individuals and/or experts in the field of autism & neurodiversity.
I will maintain those statements against any clinal articles or books describing autism differently because this blog is meant to highlight some mistakes & deficiencies of a so-called expertise on autism.
Note that autism is a complex neurodiversity that can not be understood or grasped fully with few articles or books or other medias.
One of the difficulties faced to understand and conceptualise autism is the incredible variety of its individualistic manifestations.
I don’t want to blame any neurotypical (not autistic) trained professionals. I just want them to reflect about what they think they know about autism, and what knowledge they rigidly perpetuate that is partly or completely inaccurate, misleading, dismissive etc.
I have several reasons for this calling out. One is that statistics about the number of autistic people in the general population is incredibly smaller than what reality is.
This means that a lot of autistic individuals will get additional mental health issues for years or a lifetime because they are wrongly told they are not autistic and will search for other explanations, getting them away from discovering how their autism functions and how they can manage it better.
Those statements illustrate some of the many reasons not to trust the negative diagnoses given. This obviously doesn’t mean that a lot of negative diagnoses aren’t actually accurate. Of course, many individuals coming for a diagnosis and getting a negative one will have an accurate negative diagnosis.
I am not saying that anyone suspecting to be autistic is indeed autistic. Autism has many traits in common with other neurodiverse conditions, and those traits can also manifest out of traumatic experiences, - hence why assessments always try to identify if those traits pre-existed any trauma.
Again, neurodiversity is complex, mistakes can be made despite trainings & good intentions. I just want to highlight, - non exhaustively -, some of the huge misconceptions stigmatising autism and leading to underdiagnose it because I have witnessed too many autistic individuals suffering the consequences of these misunderstandings.
0. A DISORDER - THE PATIENT 0 OF THE STIGMATISATION
The autism previously called Asperger has been renamed ASD for Autistic Sprectrum Disorder.
AUTISM IS NOT A DISORDER, IT IS A DIFFERENT NORMALITY. There isn’t just one normal way of experiencing, thinking, feeling & sensing ourselves, others & the world. There are many ways and they all need to be recognised without a hierarchy.
The same way heteronormativity tries to present all types of Queerness as disorders or deviant, the neurotypical psychiatric institutions wants to present any neurodiversity that isn’t neurotypical as a disorder or being deviant. This is the starting point of the stigmatisation. This is the patient 0 of the stigmatisation, -hence why I am using the number 0 on it.
Diversity, - whether in the field of gender, sexuality, culture, ethnicity or else -, should never be considered with a norm and deviants or disorders from that norm. Majority isn’t a norm. Majority doesn’t entitle a superior complex. The human race is beautiful because of its diversity, and it is the most oppressive insult to call that diversity a perversion or any other similar negative stigma.
This is the origin of discrimination, persecution, inequality & injustice. This is never acceptable or tolerable.
1. THE BINARY CONCEPTION – GENDER IDENTITY & NEURODIVERSITY ARE NOT BINARY:
The conceptualisation of autism tends to be split between male/men autism & female/women autism. Huge mistake!
Gender identity isn’t binary. Autism, - among other neurodiversity -, isn’t binary either.
A lot of women who get a positive diagnosis of autism have an autism usually attributed to men. That autism is more obvious and the questions for the diagnosis are made to reveal this type of autism specifically.
Women (or individuals perceived as such*) with an autism usually attributed to women are very underdiagnosed because that autism is way more adaptive, - hence much more difficult to reveal with how the questionnaire has been made, especially for adult women.
Men (or individuals perceived as such*) with an autism usually attributed to women are probably the most underdiagnosed individuals within the autistic population. This is because they are assessed for the ‘male autism’ they don’t have. They don’t function the way autistic men are expected to function, therefore not assessed for the type of autism they have, the type of autistic individuals they are.
*I said “individuals perceived as such” because the system is made for cisgender people and denying the complexity of gender identity, often assessing people with their sex not their gender, - which often is misleading for transgender and other genderqueer individuals but also misleading for some cisgender people who don’t fit the binary heteronormative conceptions of autism.
2. ASSESSMENTS MADE FOR CHILDREN, POORLY ADAPTED TO ASSESS ADULTS
Assessments for autism are made for children, and many autistic people who got a diagnosis (or not) in adulthood have shared their testimony about how all the hard efforts they worked on for years to hide and/or rectify their autistic traits were not considered during their assessments.
Note that usually those efforts are made to hide or rectify what are experienced as abnormal traits or quirks or weirdness. It is only when individuals understand they are autistic that they can read their story with the right lens and see what they were trying to hide & compensate was their different normality: autism.
I have witnessed/read/heard so many experiences with so-called experts trained to assess autism who didn’t consider at all how adaptations made over the years could dissimulate autistic traits, - even when they were told about them by the individuals coming for the assessment. This leads me to the next issue with assessments as they have been practiced for a long time.
3. PATRONISING, CONSDESCENDING & ARROGANT NEUROTYPICAL ASSESSORS
Assessments are done by neurotypical professionals who often behave with the same arrogance we often find in medical professionals. They consider that their training & knowledge are enough to understand how autism functions and how to assess it properly.
They tend to dismiss, - often with (unintentional – unconscious) patronising/condescending statements the expertise autistic individuals have acquired about themselves, about how their autism functions, since they got to suspect/realise they were autistic.
The system, - especially neurotypical people -, needs to stop undermining the expertise on autism, intelligence & insights of autistic individuals. They need to realise that autistic individuals who come for a diagnosis have very often meticulously researched autism and why they were autistic, long before the assessment day(s) (which ironically is an autistic trait in itself).
4. ECONOMICAL POLITICS BEHIND THE DIAGNOSES & THE ‘HIGH FUNCTIONING’ MYTH
Common autistic knowledge, - notably because a lot of autistic individuals have been told directly by their assessors:
The system is made to diagnose positively as little people as possible to avoid too many people claiming any kinds of benefits or financed support.
The excuse of being too “high functioning” to be considered autistic or autistic enough is constantly used to provide many autistic individuals with a negative diagnosis.
The ‘high functioning’ label is a systematic abusive trap for all autistic individuals forced then to be stuck in survival & existential despair, - with cycles of depression (often with suicidal thinking or even attempts) & burn out.
Those cycles are often ignored when they are highlighting one of the most important trait of autism: the mental/physical cost of living which is way higher than the neurotypical population (at least the one without severe traumas or other conditions that could create similar high mental/physical costs of living).
5. PERCEIVING ACQUIRED ADAPTATIONS OVER TIME AS SIGNS OF OUTGROWING AUTISM
Some so-called experts got the dangerous stigmatising ignorance to tell autistic individuals they assessed that they knew “people grow less autistic over time”.
Wrong! No one grows less autistic over time.
Autistic individuals will learn more adaptation skills, will learn to avoid certain situations that are too difficult for them or to manage them better, but the mental/physical costs of social and sensory experiences will remain, - no matter how well hidden.
Because autism assessments are made for children before they got to create adaptations to compensate their disabilities, autism tends to be assessed solely as visual disabilities, incapacities or strong difficulties.
Autism needs to be assessed, - especially for adults -, with the mental/physical costs of living experiences that neurotypical people can experience so much more easily.
Autism is far from being just about what can or can’t be done. It is about the cost of what will be done, - a cost that causes a lot of mental health struggles. The perversion of a system not focusing enough on that cost is that it will use those mental health struggles as justifications explaining why people are not autistic.
“You struggle about this because you are depressed, or because you have experienced trauma or burn out.”, - so-called experts will say. When so often those depression, burn out, traumas will be there as consequences of autism.
Note that autistic adaptations have an additional mental cost in itself, causing notably to build a distorted version of oneself with a lack of self-awareness & self-esteem, and causing various dysfunctional survival strategies notably around compartmentalised memory to help disconnecting/dissociating from traumatic experiences or to help reduce the intensity of felt experiences.
Autistic individuals are taught from childhood to undermine how they are experiencing themselves, others, the world and all situations they can be in. Autistic individuals become their own bullies as they learn to undermine their suffering & struggles, - adding long lasting sufferings & struggles to their already surcharged internal world.
And because their neurotypical entourage (family & school) doesn’t perceive how certain “regular” situations can have traumatic effects for autistic individuals, those are constantly dismissed and/or blamed for “over-exaggerating”.
Things perceived by neurotypicals as “little things”, “mild inconveniences”, “mild pains” can actually be experienced in traumatic ways for autistic individuals. And things perceived as traumatic tend to be experienced in a scale even trained neurotypical Mental Health Practitioners will underestimate massively.
Autism is really a cost-of-living condition that is widely misunderstood. It is extremely complex in variety, depth & intensity.
6. NOT ENJOYING SOCIAL INTERACTIONS & PREFERRING TO BE ALONE
A very widely spread misconception is about autistic people not liking social interactions & preferring to be alone. This is actually the first question on the assessment questionnaire. This is already starting the assessment with a dangerous ignorant stigma perceiving all autistic individuals as asocial and/or introverted people.
Though there are a lot of introverted and/or asocial individuals among the autistic community, it is not true for everyone.
A lot of autistic people have a very sociable personality, but their neurodiversity doesn’t allow them to experience their socialisation the ways neurotypicals would.
Again, it is about the cost of life. Living social experiences has a heavy energetic cost (mental & physical, - notably due to sensory saturations in social contexts). So, it’s not so much about wanting or not wanting to be alone or with others, but a fundamental intense need for isolation on a regular basis to recharge prior to social events in order to cope with the spoons spent for those, and to recover afterward.
7. NO IMAGINATION
Another widely spread misconception is about the lack of imagination. This also constitutes one of the assessment’s mistake: if you have a lot of imagination, you can’t be autistic. Wrong!
Autism is very much about extreme scales, being hyper or hypo on various elements, - including sensory, social, psycho-emotional experiences.
It works the same with imagination: some autistic people will be hypo-imaginative whereas some will be hyper and manifest a rich imagination & creativity.
8. EYE CONTACT
Assessments for autism also use eye contact as a revealing factor for a diagnosis. It is made with the belief that autistic individuals struggle to maintain eye contact.
This is true for a lot of autistic individuals, but not for everyone.
Again, it’s about being hyper or hypo. Some autistic individuals will struggle to maintain eye contact with others while other autistic individuals will struggle not to stare for too long.
Also, many autistic individuals (aware or not of their autism) have developed strategies to fake eye contact. The most common one is to focus their gaze on various parts of the face of their interlocutors instead of their eyes.
9. NOT LOOKING AUTISTIC
If autistic individuals (diagnosed or not) were given money each time they are told “but you don’t look autistic”, they would all have resolved their financial struggles.
Note that autistic individuals often struggle financially because they tend to burn out with full employments which causes a financial & mental health precarity in various ways.
There is not such a thing as ‘an autistic look’ all autistic people would have. Autism exists in all shapes & forms, appearances & presentations, ethnicities & cultures, gender & sexual identities.
10. RUDE & LACKING COMMON SENSE
Autistic individuals are often blamed for being rude when they just are too authentically straight-forward and do not grasp & practice well enough neurotypical social codes.
This includes difficulties with implied content, procedures, cultural perceptions of politeness & diplomacy, social codes of what is appropriate to say to whom in which circumstances, subtle forms of humour/sarcasm/irony, etc.
Note that the autistic mind blindness will not let autistic individuals perceive things considered “explicit or obvious enough” by neurotypicals.
Autistic individuals will often be blamed for lacking common sense just because neurotypical common sense is highly based on the capacity to understand implied or implicit content. This is a form of stigmatising ablism that oppresses autistic individuals denying/dismissing their relational disabilities.
That being said, through repetitive life experiences many autistic individuals will create learned compensations to guess when the implied/implicit content they are not able to perceive. This doesn’t mean that blindness reduces over time. This just means there are strategies built over time to compensate that blindness.
11. SELFISH, SELF-CENTRED, SELF-ABSORBED & ARROGANT
Another stigma/blame experienced by autistic individuals is that they are considered to be selfish, self-centred, self-absorbed & arrogant.
Autism comes with a very rich, intense and obsessive mind that will focused on whatever interest/experience is active for the autistic individual at one time, - an obsessive focus that will create a propension for intense monologues sharing their train of thoughts rather than dialogues.
Note that the mind blindness about perceiving social cues will lead to miss out on an exasperated/frustrated, disconnected or judging audience.
Note as well that autistic individuals are what tends to be called ‘overthinkers’, - which is another thing they tend to blamed for when it is one of the burden & gift of autism: thinking so much all the time.
You need to gently make it explicit, - without any blame or critic -, when someone autistic has been self-absorbed or not speaking with you but rather at you. I say gently because they will have internalised over time so much shame around those behaviours that intrinsically impacts their self-esteem and tends to increase their social anxiety.
12. INSENSITIVE AND/OR LACKING EMPATHY
Another shaming blame autistic individuals experience is to be called insensitive or criticised for lacking empathy.
Some autistic individuals will indeed lack empathy, but this is far from being true for everyone.
Most autistic people have in fact an issue of hypersensitivity & hyper-empathy.
What is perceived as a lack of sensitivity or empathy comes out of various factors.
A mind blindness that doesn’t always perceive signs of hidden emotions for others or covers up a felt sense of those emotions as there is no intellectual understanding of what is going on.
Often, it is not about what they feel but about their inability or difficulty to share, express, articulate what they feel. This comes notably from the fact that they often struggle to intellectualise their emotions, and struggle to express or deal with non-intellectualised emotions.
Then comes the lack of understanding of the social codes about how to express appropriately empathy. Another common disability in autism.
13. GENIUS OR INTELLECTUALLY DEFICIENT
This post is about the autism formerly called Asperger, which is an autism without intellectual deficit and with verbal skills (to oppose to non-verbal forms of autism).
Too many people attribute autism with a stereotypical form of genie. Again, it is not to say that it isn’t true for some, but not all autistic individuals are geniuses, and not all geniuses are manifesting in the pre-conceived cultural perceptions of what genie is.
Note that there are very interesting links to be made between giftedness (re-conceptualised in France as HPI – High Potential Intellectual) & HSP (Highly Sensitive Person; - fairly similar to the French concept of HPE – High Potential Emotional) and autism.
I have personally noticed on many occasions that the so-called male/men autism comes with giftedness/HPI (high IQ intelligence) or similar traits, and the so-called female/women autism comes with HSP/HPE (high emotional intelligence) or similar traits.
This is not to say that all autistic individuals are either gifted/HPI or HSP/HPE, but I do believe it happens a lot, and so much more could be discovered and re-conceptualised by exploring/researching the correlations of those similar and sometimes combined forms of neurodiversity. I am mentioning this here because I do believe it is a great are of analysis to understand the complexity & variety of the autistic intelligence/functioning.
Here you go, this is my non-exhaustive list of statements/misconceptions that are stigmatising autism and need to be rectified for the sake of autistic individuals, - whether they are getting diagnosed or not.
I would be interested to hear what you would add to the list.
Thank you for reading. Thank you for sharing.
