Diagnosis

I now have a formal diagnosis of autism and and inattentive-type ADHD.

I have suspected for a very long time hat I am autistic. It is easy to dismiss my lifelong record of serious interpersonal problems as the consequence of a difficult upbringing, and indeed that was the main thrust of eight years of therapy in which I was described as having "borderline tendencies". But I've always thought something didn't quite add up. The social and interpersonal difficulties I have aren't really consistent with any description of borderline personality disorder that I have ever read. 

I first wrote about the possibility that I might be autistic in 2014. I didn't publish that post, so I've used it as the basis for this one. It was triggered by a couple of odd events; a firestorm sparked by a post I published on Pieria (which I eventually had to take down), and a silly quiz that gave my mental age as that of a baby. Yes, I know - it was only a silly game and the zero score is almost certainly because I gave a set of answers it couldn't cope with. But that's the point. No-one else I spoke to got a zero score. And if the software couldn't cope with my answers, it is probably fair to assume that it was a pretty odd selection. 

I've written here about the economics firestorm. With hindsight, I was annoyed by the arrogance of the professor who had published his findings without including either his data or his workings, and who appeared to have made some pretty crass mistakes. And I guess that annoyance came through in the post. But the point is that although I read the post several times before publishing it, I didn't foresee how my comments might be taken. I meant them not as a personal insult but as an expression of concern. But that is not how others saw them - and it simply never dawned on me that they could be seen as an ad hominem attack. 

Such misreading of the way in which others may react to things I say or do has been a problem all my life. I don't expect others to react personally to remarks that I don't intend personally, and I am therefore shocked and hurt when they respond in kind to what they perceive as an unwarranted personal attack. And people don't understand that I am genuinely bemused by this. They think I set out to cause trouble. But I really don't. I don't do subtle. I don't even understand subtle. I say what I think, and I don't foresee the consequences. Well, sometimes I do - I am getting better at thinking before I speak. But it doesn't come naturally. Constantly monitoring what I say or write to ensure its acceptability is exhausting, and once in a while I simply lose control. That's what happened on the Pieria post - and has happened repeatedly since, as a look through my Twitter account shows all too clearly. In fact it has happened throughout my life, though less frequently as I get older. And the consequences can be extremely serious. Lapses like this have at times cost me my livelihood and very nearly my sanity.  

When I first suspected I might be autistic, I decided to do some research to find out how it presents itself in adult women. This is of course completely typical of someone with autism...

I already knew that autism is under-diagnosed in girls and women because they generally present differently from boys and men, but I found out lots more about it. I discovered that because girls tend to be more severely criticised for social and interpersonal difficulties than boys, and perhaps also are more motivated to be accepted by peers, they typically learn early on to copy the behaviour of others and put on an act. They do so at considerable personal cost - constant anxiety, fear of getting something wrong (again), exhaustion due to constantly maintaining an act, insecure identity (if you are constantly acting you forget who you really are), poor self-esteem (if you constantly have to hide your real self, it must be defective) and depression. But because autistic girls become very good at disguising their real selves, they are easily overlooked. And even if they do have a formal diagnosis, it often is not autism but some kind of mental disorder caused by the stress of maintaining the disguise. Autistic girls and women are frequently misdiagnosed with borderline personality disorder, bipolar disorder, even schizophrenia. This confuses the symptom with the cause. 

I recognise all of this. And when I read a post by Tania Marshall about Asperger's syndrome in adult women, it was like reading a description of me. Most of the characteristics she listed apply to me. Tania's post appears to have been taken down now, but this list by Samantha Craft is similar.

There is one particular set of characteristics that both Tania and Samantha identify that I think warrants further explanation, because it is not how we normally think of people on the autistic spectrum. Tania said that some autistic women are hyper-empathic:

"Highly sensitive, may not be able to listen to or watch the news, listen to the radio, read the newspaper, watch violent shows/movies or horror movies, see hurt or injured animals, abuse, war, trauma, are sensitive to the emotions and “emotional atmosphere” of the environment, experience referred emotion and psychic “6th sense” abilities, may have strong intuitive and/or psychic abilities".

And Samantha similarly says autistic women can be "highly intuitive to others’ feelings" and "highly empathetic, sometimes to the point of confusion".

We normally think of autistic people as lacking empathy. But I don't think this is quite right. I think it is more that we feel both our emotions and other people's extremely intensely, to the point of pain, and have absolutely no idea how to manage them, or even (in my case) how to identify and name them. This sort of hyper-empathy goes along with hypersensitivity in other respects too, such as extreme sensitivity to light, sound or touch. I am hypersensitive to both light and sound: I can see the flicker in fluorescent lights (it gives me migraines) and hear well above normal adult human frequencies - one of my friends described me as having "ears like a bat". The description of hyper-empathy in the paragraph quoted above also applies to me (although I do watch the news). And this brings me to the final piece of the puzzle.

I've known for years that I have synaesthesia. I see words, letters and numbers in colour. I hear in colour, too: pitches and keys in music all have different colours, and because of this I have perfect pitch. And I have a third type of synaesthesia, too, which I use when teaching. I can feel in my own body what someone else is feeling in theirs. When I am teaching singing, therefore, I "know" just by listening to the sound what the other person is doing to create that sound. I don't need to ask them, or even look at them. I can feel it. Teaching someone whose voice is damaged or very distressed is actually painful for me and I can even lose my own voice. I suppose that makes me a safe teacher, but the physical cost is considerable.

Research has established a link between synaesthesia and autism. It seems that synaesthetes retain into adulthood connections between different areas in the brain that normally disappear in childhood - if you like, our brains are relatively undifferentiated, and therefore do some very weird things. And it is thought that autistic people have a similar sort of hyperconnectivity, which might explain both our intensity and our giftedness. So perhaps that silly quiz actually said something important. Perhaps I really do have a child-like brain.

If that is right - that I have an immature brain - it would explain a lot. Children are vulnerable to exploitation because they don't foresee, and therefore can't protect themselves from, the behaviour of others. And they say the wrong things and behave inappropriately, because they don't understand social norms. I do understand social norms, now, but I've had to learn them the hard way, and I still get it wrong on occasion. So "childlike" is perhaps a good description. In which case I need protection, just as a child does - by which I mean some way of deflecting the flak that inevitably comes my way because of my unfortunate tendency to say the wrong thing at the wrong time and cause yet another firestorm.

When I first drafted this post, I was unsure whether to ask for a formal diagnosis. I thought it might  help people to understand that I don't mean to hurt, but it is an inevitable consequence of my - disability (there, I've said it now). But then I convinced myself it was simply too late. A middle-aged woman who had never even been considered as possibly autistic, let alone diagnosed..... I doubted if my GP would take me seriously, and I didn't want to put myself through the agony of being disbelieved and even laughed at. And at that time, a private diagnosis was financially far out of my reach. 

So I put it to the back of my mind. And as the years passed, I became known - once again - as someone who is clever but blunt to the point of rudeness, tramples on people's feelings, and picks fights with people. I know that many of those who follow me on Twitter do so because my feed is like an episode of Gladiators. Who is Frances fighting with today? What ridiculous war has she waded into this time? These days, even factual statements about banking attract vicious personal attacks. 

I've also come to hate freelance writing, just as previously I came to hate freelance singing teaching and before that freelance banking & IT consultancy. There's a theme here, and it's not the work itself. Recently, I've realised that the goal of my therapy journey - to "change the way I work" - really meant running away from employment. Freelancing gives me control of my working environment in a way that employment can't. But it also means I constantly have to "put myself out there" to get work, which means building networks and relationships - and not upsetting people. The price of accidentally destroying an important relationship is very, very high. And the instability of freelancing is terrifying. I long for stability and acceptance. 

When I was young, the form of autism that I have was not recognised as a disability. More severe forms of autism were, but children who would now be diagnosed as "high-functioning" autistics were then variously regarded as "gifted" and "naughty", usually both. I certainly was: my primary school reports are glowing about my intellectual ability but extremely harsh about my social behaviour. It never seemed to occur to my teachers that a child with persistent social difficulties might need something other than constant reprimands. I know, from talking to other people, that this was a common experience for people of my age. Many older people who are almost certainly autistic have never received a formal diagnosis. They have gone through their lives struggling with interpersonal relationships and avoiding social situations. As I have. 

But the world has changed, and autism is now recognised as a disability. And now that I have a formal diagnosis, people - including prospective employers - should have a better idea what to expect from me. The demons will never be vanquished, but I perhaps have a stronger shield against them now. 

 Maybe it's time to stop running away.