Following on from the enormous impact that Untypical had on me, I thought I’d continue reading around the subject matter of autism, this time exploring masking. Masking is the activity whereby autistic people try to hide their traits from others to try to pass as “normal”. It’s enormously draining and often results in burnout.

Chapter 1: what is autism really?

Within the first paragraph, the author describes a child ordering her toys by size rather than playing pretend with them. I always played pretend with my Lego and Star Wars toys. What does that mean for my self-diagnosis? Could I be wrong?

The characters were not personalities though, they were roles – kings, queens, prime ministers, and so forth. That suggests that I was creating some kind of order, a structure in my play.

Unmasking Autism starts by focusing on the neurological roots of autism, tracking it through hereditary, but also the massive differences between autistic brains – that is one autistic brain is very different from any other autistic brain. Hence, it’s such a spiky profile of skills and disabilities.

Autistic people deserve acceptance, not because we can’t help but have the brains we have, but because autism is good.

Page 23

Despite the neurological elements of autism, Unmasking Autism says that just like being gay, being autistic should be just recognised as a perfectly fine way to be.

…being gay has started becoming accepted enough that queer people don’t have to justify our existence by saying that we can’t help but be this way. If somebody were to choose to be gay, that wouldn’t be a problem, because being gay is good. Similarly, Autistic people deserve acceptance, not because we can’t help but have the brains we have, but because being Autistic is good.

Page 23

This extract is revealing and provoking. Revealing because in the text the author has come out to their audience as gay/queer (if the audience didn’t already know). Provocative because they challenge the popular concept of Autism as a disability, something to be avoided if possible (the author challenges the helpfulness of investigations into the causes on autism). Autism is good. Autism light to be celebrated.

If you want to understand Autism as a disability and a source of human difference, it’s best summed up in this way: we process in a careful, bottom-up way. Allistic folks, in contrast, make sense of the world in a very top-down fashion.

Page 24

This is interesting because (in the next paragraph) the author describes a non-autistic person in a restaurant. They quickly sum everything up and decide where to sit, what to order, and filter out sounds. I have preferences as to where to sit (somewhere quiet please), I’ve probably decided what kind of thing I want to eat before I’ve even seen the menu, and the background noise will be intolerable. Which sounds like a mix to me. However, having strong preferences for where to sit, and already having worked out what I want (which I’ll have a Plan A and Plan B already lined up) sounds autistic to me.

We’re at elevated risk of eating disorders, alcoholism and drug addiction, and insecure attachment to others.

Page 28

That describes my family. My brother is a recovering alcoholic and uses weed regularly. My dad is (in my opinion) a functioning alcoholic. I struggle to feel secure in relationships, even long term and seemingly reliable relationships such as my marriage.

When I’m hyperfixating, I fail to notice things like someone speaking to me or smoke filling the room because I forgot to turn the oven off.

Page 31

I was pre-teen, that’s all I can say about when this happened: my dad was trying to fix the lights on the Christmas tree and forgot all about the chip pan in the kitchen. I remember saying to him “dad, what are those bright lights?”. The kitchen was on fire.

I lose count of the number of times I have been engrossed and burnt my own tea. I should know better, but when I’m into something I am really into it and the world vanishes.

I often brute-force my way into paying attention to something by shutting the rest of the world out.

Page 31

Blimey! That’s me at work! All the noise and chatter and I somehow managed to turn my focus into a laser that burns it’s target and the rest of the world just ceases to exist! My boss can be talking to me and I won’t hear him. Other days I cannot do it and the noise and talk destroys my concentration and in doing so my peace of mind.

…What’s considered to be “subclinical” is often more a function of a person’s ability to hold down a job and conform to societal rules than it is a reflection of how much they’re suffering.

Page 32

Whilst I might have an assessment referral for myself, I don’t really hold much hope of a diagnosis: I have a job and I am good at it and (generally) get good feedback. I can navigate most social situations, even if they are a form of hell. I don’t collapse into a screaming heap overwhelmed by the stimulation of sights, sounds, and feelings. I just get frequent migraines.

If an autistic person benefits from more flexibility at work, and now social patience, why not extend those benefits to everybody?

Page 32

I now believe that I am ASD, and can see just how much I struggle to be productive with the constant context switching that meetings, scattered throughout the day, inflict on me. I suggested that the company’s software developers would all benefit from meetings-free afternoons. Everybody benefited from it. It doesn’t matter whether I, or anyone else, it’s autistic: all developers need and enjoy focus time.

In reality, typical Autistics aren’t all that typical. The vast majority of Autistic people who have been diagnosed flout this incredibly rigid set of criteria in one way or another.

Page 33

The “typical” set of autistic criteria were decided against middle class white boys who were growing up in a social strata known for it’s rules of behaviour and the ability to pay for diagnosis. It completely ignores females, non-white, and even non-middle class children.

My husband struggles with the idea that I might be autistic because I don’t present all the stereotypical symptoms and I can hold down a job – and even be successful in my career. Similarly, a retired school teacher friend of mine, whose specialism at her school was children with special needs, cannot see it in me.

Yet, I recognise an awful lot of it in myself – in the way my inner and outer worlds have always been at odds with each other. The way I have found reading emotions in myself and others, the repetitive behaviours, the intense interests.

Non-white boys were – and I believe – still are seen simply as troublesome or morally deviant, which makes them more likely to fall foul of the justice system and be incarcerated rather than accommodate for. This is a travesty.

Autism stereotypes: how have they affected me?

Pick a few autistic characters (or characters implied to be autistic) and describe them in three to five words:

Rainman: unable to make eye contact, mathematical genius, detail focused, unable to be out in public unaccompanied, taking everything literally, highly repetitive.

Sheldon (Big Bang Theory): arrogant, scathingly condescending, genius, likes his own seat, socially awkward.

Dillon (Casualty doctor): arrogant, scathingly condescending, genius, socially awkward.

Complete the sentence: before I knew better, I assumed all autistic people were _, _, and _.

Before I knew better, I assumed all autistic people were unable to take care of themselves, geniuses, and idiots.

Had anyone ever told you that “you don’t look autistic” or that you “can’t be autistic”? What do you think they meant by that? How did hearing that feel?

I’ve already mentioned my husband and my teacher friend. Her feeling is that the label “autistic” is too readily applied to people these days, which cheapens the value of the label for those who “really are autistic”. This makes me feel as though they think that I am lying to them, or that they think that I want to be autistic, or in a fraud. It means that I feel neither heard not seen.

I firmly support Autistic self-determination. I prefer the terms self-determination or self-realization to self-diagnosis, because I believe it’s more sensible to view Autistic identity through a social lens rather than a strictly medical one.

Page 44

This gave me pause for thought. There is indeed something self-pathologising about a self-diagnosis, which leaves me open to critism by the unbelievers, whereas self-realization describes my ASD as a realisation of self, and therefore a liberating expression.

Devon Price repeatedly describes autistic identity, and says that diagnosis is personal preference, has serious pros and cons, and that bit having a formal diagnosis in no way invalidates ones experiences.

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Chapter 2: who are the masked autistics?

In a section headed “autistic women and gender minorities”, there’s a table of stereotypical characteristics of “female autism”. I was shocked by this many items in that list I could apply to myself! The items I can see in myself are in good.

Emotional

• Strikes others as emotionally immature or sensitive.
• Prone to outbursts or crying jags, sometimes Oliver seemingly small things.
• Has trouble recognising our naming one’s feelings.
• Ignores or suppresses emotions until they “bubble up” and explode.
• May become disturbed or overwhelmed when others are upset, but uncertain how to respond or support them.
• Goes “blank” and seems to shutdown after prolonged socialising or when over-stimulated.

Psychology

• Reports a high degree of anxiety, especially social anxiety.
• Is perceived by others as moody and prone to bouts of depression.
• May have been diagnosed with mood disorders such as Bipolar Disorder, or personality disorders such as Borderline or Narcissistic.
• Fears rejection intensely and tried to manage how other people feel to avoid it.
• Has an unstable sense of self, perhaps highly dependent on the opinions of others.

Behavioural

• Uses control to manage stress: follows intense self-imposed rules, despite having an otherwise conventual personality.
• Is usually happiest at home or in a familiar, predictable environment.
• Seems youthful for their age in looks, dress, behaviour, or interests.
• Prone to excessive exercise, calorie restriction, or other reading disordered behaviours.
• Ignores physical health until it becomes impossible to ignore.
• Self-soothes by constantly fidgeting, listening to repetitive music, twirling hair, picking at fingers or cuticles etc.

Social

• Can be very shy or mute, yet can become very outspoken when discussing a subject they are passionate about.
• May be highly self-educated but will have struggled with social aspects of collage or their career.
• Struggles to know when to speak in large groups or at parties.
• Does not initiate conversations, but can appear outgoing and comfortable when approached.
• Can socialise, but primarily in shallow, superficial ways that may seem like a performance. Struggles to form deeper friendships.
• Has trouble disappointing or disagreeing with someone during a real-time conversation.

I wonder how many biologically male LGBTQ+ people recognise parts of themselves in this list? I wonder how many females recognise themselves? I wonder how many cis-males recognise themselves?

Every time I identify some part of the traits of members of the ASD community in myself, I feel reassured and validated. However, I wonder whether these “female” traits are simply because ASD females are recognised much later in life and that after much more social programming attempts to crush their unique neuro-type out of them?

All too often, the difference between who gets viewed as creepy, awkward, and obviously disabled is more a function of things like race, gender, and body size thar it is any innate difference in personality or behaviour.

Page 37

Price frequently attacks stereotyping autistic people and the quote above highlights the way societal biases will work against people of all races, genders, body shape, class, or sexuality.

In many ways, masking as outgoing and sociable can lead to an Autistic person’s struggles being underestimated or erased. My friend Berthy is energetic, wears lots of eye-catching, bright clothing, and is covered in some of the coolest tattoos I’ve ever seen.

Page 69

I picked this extract out because, in many ways, it describes me. I wear bright clothes, can seem energetic and outgoing, and have loads of cool tattoos. And like this friend, Berthy, I am very excitable and can jump around and squeal in delight. However, this gives my husband the perfect reason to say “you can’t be autistic because you are outgoing and can socialise”; he doesn’t appreciate what it takes me to do that, not that most of the connections I make in this way are shallow.

I do have real friends, with whom I show more of myself (and increasingly I have stopped pretending to be other than I am with them). They now see my enthusiasm and energy, but they also see more of how much it drains me to be sociable. The more people that are present, the more noise and stimulation, the quicker the social battery drains.

Though ADHD is not believed by professionals to affect emotional processing and social skills development directly, one prominent experience amongst ADHDers is rejection-sensitive dysphoria, feeling intense panic and distress when receiving negative (or even neutral) social feedback from other people.

Page 78

I pulled this out because I have a close friend with an ADHA diagnosis. His wife frequently has talks with him that completely destroy him and leave him feeling worthless and unlovable. I empathise deeply with this because that is exactly how feel after many a conversation with my husband.

For me, rejection-sensitive dysphoria, manifests in trying to find the “perfect” answer or resolution to whatever it is that I am being criticised for. Clearly, if I am being criticised, then a change of some kind is required: my problem solving brain starts searching for patterns and changes that can be made to make the criticism “go away”. If the criticism is resolve, then I am lovable again.

I never could fit in with other kids, but I could impress my teachers with my grasp of big words and my sophisticated-sounding opinions. I annoyed kids by talking too much about subjects that didn’t interest them. I cling to adults who found me “impressive” and equated being well-behaved with being mature and worthy of their respect.

Page 84

As a child, I was good at working out what to say to impress adults and get food feedback on how “intelligent” and “mature” I was too my parents. I was fortunate that I found a clique of similarly strange children to hang around with, which meant that I was less sober in my childhood than I might otherwise have been, but that might have also prevented me being identified as socially awkward.

I definitely learnt what behaviour would keep me safe around adults and I could voice those kind of opinions that impressed them. I especially remember that at church, where I quickly grasped the stories and the links between them. I couldn’t really get the motivations in the stories though, but I learnt the words that would give the impression that I did.

The very concept of “functioning status” is predicted on the logic of capitalism and the legacy of Protestant work ethic, which both have trained us to believe that a person’s productivity determines their worth. No one is more harmed by this worldview than disabled people who cannot work and preduce value at all, and are the most likely to end up abused, forcibly institutionalised, or homeless as a result.

Page 85

This gave me pause for thought. Not from an autistic perspective, but from the wider view on disabled people.

My husband has been unable to work for many years, which has undermined his own sense of value and masculinity, which has in turn further damaged his mental health … and in that capitalist/Protestant work ethic perspective further reduced his sense of value.

I also have a good friend; he and his partner are both disabled and punished for their respective disabilities by a system that values “productivity” of their human worth.

In both these cases, the cycle is an endless feedback loop that perpetuates and depends the existential crisis they find themselves in.

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I hadn’t intended to write so much! This is proving to be a very interesting, thought-provoking book … to be continued!