Putting myself in a box! 😧

I’ve been doing too much of this lately. For example: A picture of me got on social media recently, of me standing on one leg. I hadn’t even realised that’s what I was doing until I saw the photo. I was very happy when it was taken, and I tend to do a little dance when I’m happy. Someone commented, laughing about me being legless. Then someone else laughed at her comments. I replied that I’d only had one beer that day. All good-natured, but what ran through my mind was “Oh my god I look so autistic in that pic!” But what is wrong with doing a little dance when you’re happy? (Whether or not you’ve had a drink.) Nothing, as far as I’m concerned, and if it gives someone a good-natured laugh, all the better. Here’s a little illustration of what I mean: the bottom half of the picture is where I want to be at. Let’s have rainbows, sunshine and fluffy clouds, not boxes. I’m working on it!!!

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Living on a Double Rainbow

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Imagine if you had to go through an assessment to establish your sexuality? You have been thinking for a while that something might be “wrong” with you. You find it increasingly difficult to fit in with your straight friends. Maybe you’re getting palpitations when the women’s football team comes on although you have absolutely no interest in football, or you just find those inflatable willies at hen parties worse than ridiculous. You go to your doctor who says “You seem to be exhibiting gay behaviour – your listening to Abba and wearing checked shirts and loafers is a strong indication.” You’re then sent for a 3-hour interrogation with a specialist who probes into your childhood with intrusive questions: “Did you prefer playing with Barbie? Or Ken? Did you watch other women getting intimate with each other? Did your mother not teach you enough about fashion, make-up and being a dainty little girl?” It could be “just a phase, don’t worry you’ll grow out of it.” A few weeks later you get your written report. You satisfied their criteria. You’re a certified member of Club Lesbian. You “suffer” from “Gay Syndrome/Disorder.” You can’t change, or be cured. Not that you would want to. But the journey has hardly started. You’re still the same person you were before, but everything feels different. You can’t go back in the closet. You now have the big “Coming Out” to do. Who do you tell? And when you tell them, what will be the response? If you’re lucky: “Of course, I guessed all along.” “It makes no difference to me.” “Wow, thanks for telling me, you’re so brave, good luck!” Or if you’re not so lucky: “Why can’t you just try and be normal? Find a nice man and settle down and you’ll be ok” “I wouldn’t want the likes of you talking to my kids, you might turn them gay too.”
Luckily, most of that, at least in the liberal Western world in the 21st century, is laughable . Now read that again and substitute “gay” for “autistic” and add your own scenarios. Not so funny now, is it?
I’m writing this as a double rainbow child – gay and autistic (or, as I prefer, neurodiverse.) I did my coming out as gay twenty years ago, in my 20s. Outwardly it was a piece of cake – everyone was fantastic. Inwardly, it involved a lot of soul-searching over several years until I reached a point where I was fully comfortable in my sexuality. This year I was diagnosed with Aspergers, and a huge new coming-out journey has barely started. The two aren’t really comparable, but there are parallels in the stigma attached. A reminder – just 50 years ago in the UK, homosexuality was illegal, at least for men. People thought it could be cured by electro-shock therapy. Only in the 1990s it lost its classification as a mental illness. In over 70 countries in the world today, it is still a criminal offence, in some punishable by the death penalty. So gay people throughout history, and still today, are being told they are broken, perverted, criminal, mentally ill. They have to go undercover in order to survive. Neither homosexuality nor autism are in themselves mental health conditions (although many believe they are), but is it any wonder we are at high risk of mental ill health?
Vast amounts of money have been, and still are, being spent on attempts to “cure” autism. As with homosexuality, we don’t need or want a cure. We just want acceptance, and strategies to manage in a sometimes hostile world. It’s estimated 1.1% of the population are neurodiverse, but as with homosexuality, we actually have no idea. It could be a lot more. Many neurodiverse people refuse to acknowledge they are on the spectrum at all, and why would they want a label of “Syndrome/Disorder” and have this massive stigma attached to them?
In the last 50 years in the UK, we have come an amazingly long way in our attitudes to homosexuality. There is now very little stigma attached to it, in the majority of circles. We have laws in place to protect us at work, and we can now officially get married! Could the tides turn in attitudes to neurodiversity? It’s already begun: 20 years ago only extreme forms of autism were recognised, and it was believed that it occurred almost exclusively in males. Now we know it manifests differently in females but is just as prevalent. More and more people are now coming forward for diagnosis, especially after a family member has been diagnosed.
For over 40 years I was unaware of my neurodiversity. I just thought I was weird and socially a bit clumsy. I could continue my life telling no one, and they would think the same. I can even put on quite a convincing neurotypical act at times. Gay people can go through life never mentioning their partners or what they got up to at the weekend, or using an opposite-sex friend for cover. But why should we have to? I don’t want to hide my sexuality OR my neurodiversity. I want to be out at work, to show people I can do a job just as well as anyone even though I may struggle with relating to my colleagues. Other aspects of the job, I may do better than them. I want to be out to my neurotypical friends, so they will understand if I respond unusually or need to shut down for a while. The world needs different types of brain. We are different, not less.

 

“But you don’t LOOK autistic……”

No one has ever actually said this to me. Yet. Because I was only diagnosed 4 months ago and am not yet “out” to many people. I’d know they were trying to be nice, because who wants to look autistic? What is an autistic look anyway? If someone did say it to me, I think I’d be quite chuffed, because I do think I look autistic; I have an odd gait, unusual mannerisms and a look of the rabbit-caught-in-headlights about me. If I’m smiling, I’m trying too hard, I look all toothy, and if I’m not smiling I look anxious.
If you met me for 5 minutes
You probably wouldn’t notice much unusual about me. I can make eye contact, I can smile, and I’ve been practising small talk for the last 40 years so am not too bad at it.
If you met me for half an hour
You might suspect I’m a little strange without being able to put your finger on why. I may make too little eye contact, or too much. I may not quite have the “give-and-take” of conversation right: I might interrupt or change subjects if something doesn’t interest me. I may speak in a monotone and use very few facial expressions or gestures, and the ones I do use may appear odd to you. I’ll probably do the classic autistic thing of hand-flapping and fidgeting with my fingers although I’ll be trying not to!
If you spent longer with me
You would notice that I “zone out” and shut down after a while in social situations. I can go an hour without saying anything unless spoken to directly; this doesn’t mean I don’t like you, or even am feeling distressed or uncomfortable, I just literally have nothing to say. If anything with an emotional content is discussed, these things will be especially noticeable. I will not know how to respond. That’s just me. If you can get past this, you will hopefully also notice that I can be good-humoured, positive, upbeat, funny, friendly, supportive, caring and deep-thinking.
You cannot tell an autistic person by their looks. You need to spend time with us and only then will you begin to understand.