Actually Autistic

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I’m autistic, actually. This not a sentence I go around telling anyone and everyone, but what the hell, it’s out there now.

My silence was for a number of reasons.

Firstly, a silly part of me thinks I’m too high-functioning to deserve the diagnosis. A spectrum disorder, some people need a lot more care and support than I do to make their way through life. I’m largely independent, can hold down a job and relationship, and, having lovely family and friends, am not half as isolated as some people on the spectrum.

Secondly, people’s perceptions of autism are, well, usually wrong. So often, the stereotype is of a male maths whizz who is socially awkward, aloof. I already have to battle with the stereotypes of Tourette’s. To battle with more stereotypes seems a bit too much of an effort I just don’t need.

Thirdly, I don’t want autism to define me. It makes me who I am, of course. But I don’t want to be labelled as Alice the autistic woman. I’m just a person who happens to be on the spectrum. My personality is bigger than the diagnostic criteria for ASD.

But I am, most definitely autistic. I have the “right” comorbidities: Tourette’s, OCD, depression. I get obsessively passionate about subjects: music mostly, but also ads and TV shows. I take things literally, hating metaphors such as “it’s no skin off my nose”, because I literally think of skin coming off a nose. I also can get overwhelmed by loud sounds and crowds, have an excellent memory and an eye-for-detail.

One doctor said he didn’t believe I had autism because I was previously a bartender: a job he deemed impossible for autistic people to do.

That’s crap, of course. An excellent memory for cocktail specs is a boon in the bartending industry, and interacting with drunk people is the easiest thing in the world (hint: you can say anything).

So, I’m autistic, and I’m going to be talking about it more from now on. Because, if every high-functioning female on the spectrum were to remain silent as I have been, then society’s stereotypes will never change, and that, of course, would be a terrible shame.

Annoying and Nice Things People Do Around People Who Have Tourette’s

The Annoying

  1. Stare
    Staring is something you have to get used to when you have Tourette’s, but if you’re curious as to what I’m doing, just ask me what’s up, and I’ll be happy to explain. Don’t just stare.
  2. Usher their children away
    Tourette’s doesn’t mean you’re drunk, high or crazy. Tourette’s does not harm children. Do not usher them away.
  3. Tell me to calm down
    Telling a person with Tourette’s to calm down is like telling a depressed person to cheer up. You just don’t do it.
  4. Imitate the tics
    Just rude. And annoying. And makes me feel self-conscious.
  5. Ignore the tics so much you that ignore the person
    So often when I am ticcing a lot, people ignore me entirely, not including me in the conversation. Just because I’m yelling “boobs” all the time doesn’t mean I don’t have anything valuable to contribute.

The Nice

  1. Ask questions
    I’m happy to answer anyone’s questions on Tourette’s. I’ve become a bit of a walking Tourette’s encyclopaedia. I might as well be. This thing is chronic and incurable: I’m having it forever.
  2. Open up about their own health struggles
    This is just so sweet and happens quite often. Once, I spoke to someone about my Tourette’s and she immediately opened up about her deafness. It breaks the ice.
  3. Laugh with me
    My tics can be hilarious. Laugh with me.
  4. Treat me no differently
    I love it when people don’t patronise, point, or stare at me, when they just treat me as a person who tics, because, guess what? I’m just a person who tics.
  5. Massage my shoulders
    Why this calms me down, I have no idea. But it works and I love it. To be fair, it’d be a bit odd if a random person off the street started massaging my shoulders, but friends and family? Sure.

We Are Next

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The other week, I was lucky enough to speak on We Are Next – a podcast targeted at students trying to get into the advertising world and junior talent. I spoke about the difficulties applying and interviewing when you have the added bonuses of autism and Tourette’s. You can listen to the podcast here.

No, You Don’t Have Tourette’s

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Sharon Osbourne, a 66-year-old TV personality has reportedly said “Sometimes I think I have Tourette’s without too much swearing.”

I have never met Sharon Osbourne, but I am willing to bet she doesn’t have Tourette’s.

First things first, you don’t have to swear to have Tourette’s. Most people – between 75 and 90 percent of people with Tourette’s – don’t experience coprolalia.

Secondly, Sharon Osborne doesn’t have Tourette’s. What she has is a condition called “verbal diarrhoea” – an affliction that causes people to talk utter crap.

Thirdly, everyone needs to stop using Tourette’s as an excuse for bad language.

Bad language and Tourette’s are not synonymous.

I have had numerous people tell me they think they or their boyfriend/partner/cat has Tourette’s because they swear so much. But swearing is a small part of an incredibly complicated condition – a condition which can be the source of physical pain, isolation, and unemployment, a condition which causes much more motor tics than it does vocal, a condition which has been ridiculed by celebrities and non-celebrities for far too long.

It’s time to stop using Tourette’s as an excuse for poor behaviour. If you really think you have Tourette’s – if your body and voice are doing things out of your control – then see your GP. If you think you swear a bit too much, then maybe just chill out.

Tic Attacks

Tic attacks, tic fits, tic status, whatever you want to call it, they suck in a serious way. Imagine being unable to control your body or voice for hours on end. Imagine hitting your head against the wall, grunting, throwing objects, breaking stuff, jerking your arms, constantly writhing and shaking, falling to the floor when you try to walk, not being able to string a sentence together without your Tourette’s interrupting it with all sorts of random expletives.

I’m in week three of a job at an advertising agency. I love the place. They couldn’t be more supportive of my Tourette’s. They let me go home early if my tics are too disabling. They send me in a taxi if the Tube is too hard to handle. They let me take more frequent breaks. They have let everyone in the building I know about my condition so no one is alarmed or surprised when I suddenly let out a profanity.

The problem is my Tourette’s is bad at this job. I’ve had three tic attacks in three weeks which is unheard of for me. The problem is I don’t want to be seen as the sick, disabled employee who can’t handle a 9 to 5 workday like everyone else. I want to be well, to work consistently, to knuckle down like everyone else. The problem is I don’t want to have Tourette’s, and yet I do, there’s no cure, the treatments I have had have only alleviated some of my symptoms but by no means all of them.

It’s a big problem – one that, as of yet, can’t be resolved. All I can do now is be thankful that my employers are so understanding, be grateful that I have regular access to a neurologist, and be happy that my friends and family are supporting me through my Tourette’s – whatever it brings.