Today’s post in this year’s Autism Acceptance Week series is a review of important vocabulary and concepts related to autism.
I decided to write from this somewhat “introductory” angle after being reminded by peers that I was assuming too much background knowledge from my favorite target audience.
(Yesterday: support structures for autistic adults.)
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Let’s start with the basics: what is autism?
There are two perspectives:
- the psychiatric perspective, defined by a large book called the “DSM”. Its latest edition is DSM-5, from 2013. In this latest edition, we read: “autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behavior.”
- the social and educational perspective, defined by the experience of autistic folk and how they report on that experience themselves. From this perspective, autism is all about in a difference in the way autistic folk relate to their feelings (emotions and senses) and to other folk (social protocols, body language, and communication).
One key point to drive home is that the psychiatric definition of autism is only able to describe and define a small part of the autistic community. It only exists because psychiatrists need some distinction between autism and other things they see in patients. Key word here is “patient”. Many autistic folk live their life without needing to see a psychiatrist.
The psychiatry field is largely blind to the non-pathologic forms of autism.
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Some basic words with my understanding of them:
- allistic: comparatively non-autistic relative to an autistic individual or group. (Since autism is a spectrum it is hard to create a hard boundary between autistic and non-autistic folk; “allistic” can only be defined by contrast.)
- hyperfocus: the ability of autistic folk to engage with a topic or activity for extended periods of time (I will say more on this below).
- masking: when an autistic person pretends to not be autistic and forces themselves to avoid stimming (I will explain further throughout this post).
- neurodivergent: further from the median in the local social environment in terms of psychological characteristics. There are many forms of neurodivergence besides autism, like ADHD, Tourette’s, etc.
- neurotypical: close to the median in the local social environment in terms of psychological characteristics.
- special interest / enthousiasm: a topic or activity that provides particular joy to an autistic person, especially as an outlet for hyperfocus, and can help them calm themselves and recover from dysregulation.
- stimming: a repetitive behavior that an austistic person uses to help regulate their own feelings and recover from dysregulation.
- autistic burnout: a dysregulated state where the autistic person becomes unable or unwilling to perform socially and follow social rules (including performing at a job) because they are exhausted after an excessively long period of masking or disruption of their routines.
- autistic meltdown: a dysregulated state where the autistic person becomes unable to communicate and process their emotions because they are overwhelmed by current circumstances (over-sensitivity in their body, suddent changes in the environment, dealing complex or unusual social situations, etc).
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The words that describe autism evolve throughout history.
Like ADHD, autism is a difference in human constitution that is probably as old as mankind, but that society only re-learned to recognize recently. In ancient times, autistic folk would be called “shamans”, “social talismans”, “the odd one”, etc.
The medical field, psychiatry in particular, started to take an interest in autism at the beginning of the 20th century; this was a time when there was a fad in the medical field to inventory all of human diversity. Freud gave to doctors a medical handle on psychology, and that handle was then used to try and develop medical insights over all matters of mental health. That is how autism got its turn and made it to the DSM.
However, that is still a work in progress. For example, the previous edition of the DSM, the DSM-4, was trying to categorize autism too rigidly. That is where the following terms existed:
- “Asperger’s syndrome”
- “Classic autism”
- “Rett syndrome”
- “Childhood disintegrative disorder” (CDD)
- “Pervasive developmental disorder not otherwise specified” (PDD-NOS)
All these terms are now obsolete and are (thankfully) falling out of use. The DSM-5 now has a single “autism spectrum disorder” for all autism diagnoses.
Note again, like above, that the DSM is a psychiatry book and not generally applicable to autistic folk who do not need medical support.
This is why I find the word “disorder” to be poorly applicable to autistic folk who do not need medical support.
It’s also likely that the DSM-6 or a later edition will create yet another way to think about autism in a medical sense.
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The world is learning to transition away from “autism as a disability” to “autism as a difference in support needs”.
One development in the DSM-5 was to shift the focus away from categorizing the symptoms of autism, to instead focus on support needs.
This was a monumental shift because it was the first time the modern medical community accepted that autism was not a disease. Autistic individuals simply are, and come in different variations, and the best thing doctors can do is to support them and the folk around them.
Currently, the DSM uses three “levels” to categorize autism: ASD-1, ASD-2 and ASD-3. In a nutshell:
ASD-1 folk (previously named “high functioning”, or “Asperger’s syndrome”) can live independently and perform socially in many contexts. Their struggle with recognizing (and thus following) social norms in communication cause anxiety and often isolation. Therefore, they may need support to facilitate their social interactions.
They may encounter issues with executive function that hinder their independence. They may need advisory or incidental support with organization and planning.
ASD-2 folk may be able to live independently but can only perform socially in specific contexts or with a specific social group (e.g. family, trusted peers). Therefore, they need assistance to interact with service personnel, government instances, etc.
They find it extremely hard to change focus and have narrow interests, which hinders their ability to engage socially. Therefore, they need a more attentive support group to satisfy their social and emotional needs.
They may engage more intensely in repetitive behaviors (stimming) as a way to cope with dysregulation. Therefore, they need access to a safe environment where they can stim without interference.
ASD-3 folk (previously named “low functioning” or “classic autism”) are generally less able to live independently and have a limited ability to express themselves in a way that is understood by others. Therefore, they need attentive assistance to detect their immediate needs, which they cannot communicate themselves.
They can experience frequent distress or anxiety due to their inability to communicate or their awkwardness. Therefore, they need a safe social environment with very direct, honest and clear interactions.
This “linear” scale is imperfect. The DSM even acknowledges this. For example, some autistic people need support at school/work but are fine at home, while others may do well at school but struggle in social situations.
Every autistic person is different and need specific, personalized support structures.
Also, again, the view of the DSM exists only because of patients who reach out to doctors because their situation needs medical care.
I personally like to think there exists “ASD-0”, where folk do not depend on support (like ASD-1-2-3 folk) but still benefit from it.
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The legitimacy of the viewpoint “autism is just a difference”, and not a “disability” or “disorder”, stems from the fact that autistic folk distinctly have certain positive attributes and skills that allistic folk do not have, or not as much.
Examples include:
- hyperfocus, or the ability to stay focused on a topic of interest for extended periods of time.
- an extra-ordinary ability to classify, to create exhaustive nomenclatures of concepts, traits, properties of the world around them.
- a superior ability to observe and see things as they are, not as they are said or taught to be. Autistic folk can more easily pierce the veil of preconceptions, prejudice and social beliefs to access a clearer perception of reality.
- a higher degree of loyalty. (I see this is true from experience, but do not have an explanation of why yet. Will welcome ideas on this topic.)
- perhaps suprisingly, a high degree of empathy. It may be surprising because it does not show easily. The reason for this is that an autistic person can often struggle with regulating their own emotions. If they expose themselves empathically to others, they run a higher risk of becoming dysregulated by the other person’s emotional state. This is why autistic empathy only reveals itself in a trusted environment.
These are also called “autism strengths” and also motivate a new movement in identity politics, called “autistic pride.”
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For autistic folk, the most uncomfortable part of being autistic is the expectation that they should “mask” or “camouflage” their signs of autism to meet social expectations.
This is called autistic masking and it is exhausting.
As per Wikipedia:
This may involve behavior such as suppressing self-calming repetitive movements, faking a smile in an environment that they find uncomfortable or distressing, consciously evaluating their own behavior and mirroring others, or choosing not to talk about their interests.
As masking is often a conscious effort, it can be exhausting for autistic people to do this for an extended period of time (socially, but also in work contexts).
In addition to making the person appear non-autistic or neurotypical, masking may conceal the person’s need for support.
Such autistic people have cited social acceptance; the need to get a job, avoiding ostracism, or avoiding verbal or physical abuse as reasons for masking.
Research has found that autistic masking is correlated with depression and suicide. Many autistic adults […] described profound exhaustion from trying to pretend to be non-autistic.
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I am willing to go out on a limb and suggest that the number one goal of autism awareness and acceptance initiatives is to remove the need for masking.
Masking for autistic folk is like remaining “in the closet” for non-heterosexual folk. It is a social pressure to perform in a particular way to satisfy the expectations of others, rooted in an understanding of social interactions that is neither current nor useful.
It is exhausting, but it is also traumatizing: it is a form of social violence that puts autistic folk down, forces them to be lesser forms of their true self, for the benefit of others.
Masking must go. Autistic folk must be allowed to freely stop masking.
The parallels between autistic masking and the closet for non-heterosexuality do not stop there.
Autistic folk often develop anxiety at the idea of dropping their mask in a social setting, because of internalized autismophobia. (This is a word I just invented!) They are afraid that dropping their mask will have bad consequences: ostracism, violence, discrimination, even though these fears are no always warranted. This is akin to folk who are afraid of “coming out” with their sexuality and gender.
Conversely, an autistic person who learns to stop masking while in the presence of friends, or even in a larger social context, often experiences considerable relief. The experience is really that of a newly gained degree of freedom, of new opportunities, of extra authenticity in relationships, etc. This is also akin to folk who have already “come out” of the sexuality closet and are able to develop fuller, richer relationships as a result.
This parallel further informs us on how to make things better.
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Back in the 1970s, the largest obstacle to social acceptance of non-heterosexuality (and other divergences from gender norms) was ignorance. Society at large was able to foster violent, discriminating and intolerant norms because of an assumption that divergent sexual behavior was correctable and also generally so infrequent as to be negligible. Later, in the 1980s, politicians and medical experts were able to dismiss the AIDS epidemic because there was little value in addressing a disease “on top of another disease”.
Fighting against this systemic discrimination was only possible by first reaching normalization through visibility. It was only possible to dispel the notion that alternate sexualities or gender expressions were a disease, or abnormal, by showing them. If folk could see other “normal” folk around them, in their own families, or the folk who worked with them, announce their non-adherence to these norms, they would be more ready to accept the idea to drop or evolve these norms. The huge push towards “coming out culture” in the late 1980s and throughout the 1990s was a movement born from self-preservation, yet it largely worked. It was exactly what was needed to shift social norms, and eventually enabled gay marriage—starting on April 1st, 2001, exactly 20 years ago to the day, in the Netherlands—and transgender rights.
Autism awareness/acceptance is on a similar path today.
Autism awareness, today, is fighting a social taboo. We are not yet at the “acceptance” step yet.
I predict that ten years from now, the topic will not be taboo any more but half of the population will still try and pretend that autism is a disability / abnormality and needs to be eradicated.
Then, twenty years from now, perhaps, autism will matter no more in social interactions than whether someone is tall or has blonde hair, and there will be legal protections that guarantee and fun access to suitable support strutures.
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As the body of resources about autism increases, it is interesting to see who creates which resources, and for whom.
The first wave of “autism knowledge” came from the medical field, in an effort to identify and classify conditions that the doctors were asked to help with. That wave of knowledge was produced by doctors, for doctors, and to a lesser extent, as explanations for the parents and caregivers of autistic folk. One result of this wave is the DSM view and the body of medical science around autism.
The second wave of “autism knowledge” was created by parents and caregivers of autistic folk, partly to exchange information about caregiving, and partly to create a group community. This is where the notion of “autism parent” (= parent of autistic folk) came from: for some caregivers, the caregiving work is so difficult that it becomes part of their identity, and they start to specialize their social circle to mostly hang out with fellow caregivers.
The third wave of “autism knowledge” started maybe ten years ago, and was initiated by autistic folk, with support from their caregivers and support networks, but for caregivers. The two main messages in this wave of resources are “autistic folk are people too”, i.e. remind caregivers to treat folk with respect and humanity; and “every autistic person is different”, i.e. invite caregivers to let the autistic folk inform them about the specific care and support they need (instead of making assumptions). Of note, this wave still works under the assumption that autism is a disability and that autistic folk need to be “given rights”.
This wave is still on the rise, with figureheards such as Temple Grandin.
The most recent wave of “autism knowledge” started just a few years ago, and is initiated by autistic folk and for autistic folk and their social peers, not just caregivers. The purpose in this new wave is to create visibility (advocacy), create a sense of autistic community, and exchange techniques, experiences and and know-how within the community. This wave differs from the previous in that the new assumption is that autistic folk already have rights and dignity. The mission changes to instead evolve society and the expectations of allistic folk, to carve out more spaces where autistic folk can “be themselves” while enjoying the same access to social goods and services (like jobs).
This article series is part of this wave, as well as numerous “content creators” on Youtube, TikTok, Instagram and other places. Here are some example such creators:
When you do your own research on autism, try to find out who provided the resources you study, and who they are made for. Be suspicious of content that proposes “solutions” or “approaches” to “deal” with autism, that was not created by autistic folk. Be mindful of the timeline, which “wave” of knowledge and understanding you are learning from.
See a discussion of good/bad autism resources here.
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To complete today’s post, a request: a coworker, an ally really, asked me for a reading list on autism, to get started. She finds the wealth of information available a bit overwhelming. I feel intimidated by her request—so much responsibility! Do you, dear reader, have recommendations as to how to get started effectively?