Having a diagnosis of Autism/Asperger’s can be an issue of identity and disclosure. From being presumed to have no sense of humour, no empathy and a limited understanding of social skills, to conversations where ‘neurotypicals’ list all suspected autistic relatives…. Maybe it’s best not to disclose?
Recently, while staying at a friend’s, I plucked up the courage to inform him that I’m diagnosed with ASD (Autistic Spectrum Disorder). There was a ticking clock in the room. And that day, whether it was the relentless rain or that I had recently been given more hours at work… I needed the ticking to stop! It was driving me crazy. Every second. Never relenting, never slowing.
Unfortunately, in my experience, if I simply declare that I have a problem with light, sound, or smell, but do not mention my ASD, I am not always met with understanding; it can be thought hilarious to try and irritate me further by clicking pens or cracking knuckles… the culprit, not realizing that the noise is not simply a little annoying, but tear provoking!
In the past I have taken clocks down when people aren’t looking then stashed them in closets or draws. But this just adds an echoed effect to the ticking, and I also run the risk of gaining a reputation as a weird clock thief.
So, this time, I was just going with the truth. This was not my small hometown, where the first time I declared I had Asperger’s, a friend refused to let me use knives in her home (even to spread butter!) for fear I might leap up and stab her. This time I was in liberal, forward thinking Brighton…
“You’re Autistic? I couldn’t tell!” Sid stopped scooping Crispy Corn, a cheaper variety of Cornflakes, into his mouth.
“Well, yes, but… high functioning Asperger’s…” Despite my personal resolution not to be ashamed by my ASD, I found myself scrabbling for words, trying to explain away my Autism by filtering it out to the slightest degree. “And I don’t really have that many prob…”
“Are you good at Maths?”
“Urm. I got a B at GCSE.” I considered that to be good, or at least above average.
“Oh! How strange! Autistic people are supposed to be Math geniuses. There’s this French guy with Asperger’s who knows Pi to a few thousand decimal places.”
“Yer?” I watched a lump of yoghurt gloop off my spoon back into the bowl. I was failing. Failing at being autistic.
He leaned forward, risking tipping his cereal bowl. “Do you have a skill?”
“I like to write and perform poetry.” I waved my spoon theatrically, knowing my autism was failing to impress.
“That’s quite imaginative for Autism isn’t it? But, I mean, do you have any specific Autism skills?” He waited, then started again, “There’s this boy. He just listens to a song once,” Sid was so excited he had put his spoon down, “And he can play the whole thing on piano, even if it’s Beethoven!”
“Many people with autism often don’t actually have ‘Autism Skills’. Only 10% have been found to have amazing savant abilities, (Statistics from study in Temple Grandin’s book, The Autistic Brain) meaning that 90% are just ordinary intelligent individuals. What can sometimes be misinterpreted as an ‘Autism skill’ is a strong fixation on a subject. But what caused the individual to become brilliant would be intense research and practise, not Autism.”
… is what I wished I had said to Sid.
Digging the end of my spoon deep into my bowl of yogurt I muttered,
“Urm. No. Not really. I play four chords on guitar.”
Sid’s girlfriend Sam turned to me, she’d been living with him ever since losing her job at Waitrose. Her eyes widening by the second with… empathy? Understanding?
No. They were brimming with pity…
“One of my friend’s brothers had Asperger’s. He wouldn’t tell anyone about it.” Sam put a hand on my shoulder, “So, she’d wait until he was gone, then tell people herself.”
“Why?” I regretted asking, wishing I had just continued eating my yogurt until the conversation fizzled out.
“So people wouldn’t make fun of him.”
I nodded, swallowing my mouthful of raspberries. Her friend’s brother had probably wanted people to genuinely like and accept him, instead of just making allowances because they knew he was Autistic. Sam had recently had bangs cut into her thick blonde hair, I wished them to close in like curtains across her face.
“I don’t think that the problems you have are Autistic.” Sid spoke again through a mouthful of Crispy Corn, “I have similar problems, with anxiety, and noise. I’m not Autistic.”
I neither felt like defending my own autism or agreeing to not having it. I dropped some more raspberries into my yogurt.
“You,” he pointed his spoon at me having finished his Crispy Corn, “You don’t have any typical signs.”
As a proud member of Autistic Spectrum Communities, I was not sure how to take this. I believed it was meant as a compliment. But how can I feel pride of being a member of Autism Groups, and also receive compliments about ‘not seeming autistic’? I knew what he meant. He meant that I did not seem ‘odd’, that I am usually ‘chatty’ and outgoing. And that these were not qualities he associated with Autism.
I just muttered, “Thanks” and stirred my yoghurt fast.
I wanted to direct them to Aspergirls ‘Empowering Women With Asperger’s’ a book by Rudy Simone, an author diagnosed with Asperger’s herself. She interviews other ‘Aspergirls’ (a term used to refer to women with Asperger’s Syndrome) so that she can document their first-hand experiences of Sensory Overload, Stimming, OCD like symptoms, Depression and Anxiety. I wanted to explain to my friend that ‘High Functioning’ (<not a term that I like using!… but that issue can wait for another blog!) Autism or Asperger’s is not ‘Lesser Autism’, or ‘Not Really Autism’, but a highly complex condition relating to someone’s relationship to themselves and their environment!!!
And that of course he had had some similar experiences to people with autism, because people with autism are humans that you will relate to, not incomprehensible aliens with super-powers!!! That he related to my experiences neither made him autistic, nor me not autistic; It simply meant that the problems I have in certain areas are consistent, and have caused me significant problems. (You wouldn’t tell someone diagnosed with depression that they didn’t have depression, because you empathized with them… would you? – I hope not!)
But alas, I felt exhausted. The conversation had not gone how I’d anticipated. I had simply wanted them to say,
“That’s fine with us. If there is anything else that you have difficulties with, let us know.”
I definitely did not want to spend the next half-hour giving a lecture on autism theory. However, at least they hadn’t presumed that I might stab them, so I guess it was an improvement on my first time ‘Coming Out’.
The Autistic Community has only relatively recently gained more substantial acknowledgement, and because of this, when I mention I’m on the Autistic Spectrum, I seem to turn into a spokesperson who must defend Autism with an iron fist! I feel that I should be a vessel brimming with statistics and recent studies, ready to educate and inform.
Needless to say, this is quite daunting … I normally only want to mention my ASD in order to explain why I am in discomfort from the penny clanking in the tumble dryer, or why, though I have had fun at the party, the idea of going to the club, on this particular day, fills me with fear and dread: BOUNCERS, NOISE, STROBE LIGHTS… DRUNK PEOPLE!!!
But the word ‘Autism’ can lead into an exhausting debate and a swap of Autism scenarios that range from ‘amazing’ to ‘depressing’, all of which leave me in the spot-light and overwhelmed!
So, maybe it’s best not to say the ‘A word’ around Neurotypical people?
“You might be comfortable with your diagnosis, but, worry that it will define you in the eyes of others. What will your boss think? Your co-workers? Your loved ones?”
Dr Temple Grandin is a famous American self-made millionaire, she is also Autistic and lectures in Autism Studies. In one of her many books, The Autistic Brain ‘Exploring the Strength of a Different Kind of Mind’, she talks about her own experiences of not wanting to disclose. She has summed up my dilemma! – I also worry about how my friends may view me, and I am very much concerned about not being considered for jobs if I disclose at interviews (I never believe the equality declaration section!!!).
However, though I have reservations about coming out to Neurotypical society, joining communities comprised only of Autistic individuals such as The Women’s Autism Network (A large organisation dedicated to Autism awareness) and also closed FB groups comprising of only Autistic women, to be really useful and supportive places. It is within these groups that I have found articles about Autism that do not talk about it as a disorder, but instead discuss very personal stories and experiences, as well as Autism politics and culture.
Articles that have been published within the Autistic Community:
- The Failings of Person First Language – Autism Woman’s Network
- Autistic Representation Needs Autistic Voices – Woman’s Autism Network
- The Costs of Camouflaging Autism – Spectrum News
- To My Preteen Self – Autism Woman’s Network
- The New Scarlet Letter – Autismhwy
People who are actually Autistic, do not wish to pigeon-hole, type-cast or pity themselves. And in these little Autism clusters (a good name for the first Neurodiverse cereal brand?), I can share problems and be offered real advice by individuals going through similar experiences.
But maybe I can only claim to be being half ‘Out of the Autistic Closet’ as I only feel comfortable telling other people on The Spectrum that I’m also, on The Spectrum.
– Sadly, because people like myself choose not ‘Come Out’ to Neurotypical people it creates a bias….
People who are more affected by spectrum attributes, who might ‘look’ or seem more typically Autistic, are noticed by Nerotypical individuals. However, people with more subtle spectrum attributes (like me!), hide their Autistic qualities for fear of prejudices associated with more severe Autism. Because of this ‘we’ are not associated by Neurotypical individuals as having Autism at all! An infuriating ‘catch 22’ situation – as it is only when typically ‘High-Functioning’ (<shudders… as I hate using that term!) Autistic individuals start declaring themselves that assumptions can be broken down.
But, I am not sure if the majority of Neurotypical society are currently at a point where they understand the nuances of the spectrum, and, because of this, the first few ‘High Functioning’ (<shudders again!) Autistic and Asperger’s individuals to ‘Come Out’ could face harmful prejudices. These prejudices may lead to Autistic individuals being faced with truly infuriating questions, which can be clearly witnessed in BBC3’s brilliant video interviews: Things Not to Say to an Autistic Person
People with Autism or Asperger’s are asked to discuss how they’ve felt when Neurotypical people have discovered they’re autistic. The video highlights frequent assumptions and questions…
- But you don’t Look Autistic!
- I couldn’t tell you were Autistic!
- Are you sure you are Autistic?
- Isn’t everyone a bit Autistic?
It would seem that other people from the Autism Community have had very similar experiences as myself (which is disappointing on a sociological level, but also very comforting on a personal one!). Being affiliated with LGBT movements, (I’m Bi…. as you already know I’m autistic, I feel I can share this too) I saw a correlation between the struggles for identity that are faced within these groups, and problems with identifying as part of Autistic Spectrum Communities, i.e. If someone with an Autism diagnosis discloses, things may be presumed about them leaving them open to certain lines of questioning.
From this I deduced it good practise, that when asking someone with ASD a question, to imagine the word ‘Autistic’ swapped with ‘Gay.’ And if the question sounds rude, it most probably is a rude question…
- You don’t look Gay! – Gay (Autistic) isn’t a look.
- I couldn’t tell you were Gay! – Gay (Autistic) isn’t a personality type, it encompasses all kinds of people.
- Are you sure you are Gay? – This is not a debate. I AM TELLING YOU that I’m Gay (Autistic).
- Isn’t everyone a bit Gay? – You can look at it in this way, but only if it helps bring a greater understanding and empathy, and not if it is going to be used as ammunition to take away someone’s culture, identity, and lessen their claim to first-hand and very personal experiences.
Please watch the video above ^… it is very insightful!
So, to conclude… there is currently ‘White Shame’, and also ‘Straight Shame’. Let us now acknowledge ‘Ablest’ and ‘Neurotypical Shame’! – Only joking!!!! – This is not what I actually want to happen, and it is not the reason I wrote this article; I do not believe ‘Shaming’ to be helpful or productive.
In my own experience it has been mostly well-meaning individuals that have inadvertently made ‘Disablist’ remarks. Shaming them would only lead to resentment by Neurodiverse individuals and silence around the topic of Autism. This could lead to a deeper divide of understanding between the Neurodiverse and the Neurotypicals.
What could help would be having more rounded information circulate around the topic Autism which covers individuals on different levels of the Spectrum (and that properly acknowledges women on The Spectrum!). Also, having more actual Autistic Autism advocates speak for Autism Organizations (such as Temple Grandin, author of The Autistic Brain and Rudy Simone, author of Aspergirls) would be a start to correcting false-assumptions around the topic of Autism.
But, it is my firm belief that no individual on the Autistic Spectrum should feel obligated to ‘Come Out’ of isolated, but possibly safe closets (Which also means that if you know someone with a ASD diagnosis, you should always ask them before telling anybody else!). How someone feels about their own Autism is highly personal, and, until there is proper Autism awareness and understanding, people on The Spectrum could face real Neurotypical ignoramuses.
Thanks for reading!
If you have anything to add to the topics I’ve discussed please leave a comment – It would be great to hear what people think, and what other people’s experiences have been.