I’ve been accused of ableism!

I once spoke to the horror author Murial Gray, author of the criminally-overlooked masterpiece Furnace, about an unpublished writer accusing her of plagiarism. She was actually quite flattered, and said, ‘That’s how you know you’ve made it as an author.’

I carried that little nugget with me all my life, but I no longer agree with it. My new philosophy is this:

‘You know you’ve made it as an author when you’re accused of an -ism.’

Among the many five-star reviews of my book An Adult With An Autism Diagnosis: A Guide For The Newly Diagnosed (yes, I am blowing my own trumpet), there’s one that describes my view of the Autism Spectrum as ‘ableist’. Since ableism is discrimination and social prejudice against people with disabilities, and since I am a person with autism and thus disabled, I’m not entirely sure how I can discriminate against myself. If I were prejudiced, and held the belief that disabled people are inferior to non-disabled people, I can’t imagine why I’d have married an autistic person, or why I fight for the rights of people with autism – hell, even why I’d ever stick up for myself. At face value, this accusation is clearly utter nonsense from someone who uses neo-liberal shibboleths without engaging critical thought.

However, as someone who wrote the book to help people who, like me, were diagnosed with autism later in life, I’m conscientious about making sure it does the job it’s meant to, so rather than dismissing criticism out of hand, I try to see if there’s anything I can learn from it. As evidence of my ableist approach, I’m accused of depicting autism as a straight line from ‘not very autistic’ to ‘very autistic’. This may well be a fair point, but it’s certainly worth addressing.

There are many different models of representing the Autism Spectrum. I had considered creating a diagram of a very common one that maintains the Autism Spectrum is like a 100-piece jigsaw, with each piece an autistic trait. Everybody on the planet, so the theory goes, has several pieces; once you have around 60, you’re diagnosed with Asperger’s or High-Functioning Autism; once you have around 80, you’re diagnosed with Classic or Kanner’s Autism; nobody has all 100. Thus two Aspergic people with 60 pieces might only have twenty pieces in common; their autism, or how it manifests, might therefore be markedly different, and would certainly be different from someone with 90 pieces who has Classic Autism.

The reason I rejected the jigsaw puzzle model is that I disagree with it, because the difference between autistic and neurotypical people is one of kind, not amount. You can’t count up behavioural traits and then draw a line with ‘autistic’ on one side and ‘neurotypical’ on the other. That would certainly be ‘ableist’, and by implying that everyone is on the Autism Spectrum, it devalues the reality that we are different.

I chose to depict the Autism Spectrum as a line from high-functioning to low-functioning because that is how it is spoken about, both in professional circles and among the autism community – or, at the very least, the people with autism, their families and support workers that I hang out with. Since DSM-5 merged the different autism diagnoses into the single umbrella term ‘Autism Spectrum Disorder’ and defined it as Level 1 (requiring support), Level 2 (requiring substantial support) and Level 3 (requiring very substantial support), how else are we to create a diagram of the Autism Spectrum than a line of increasing severity/decreasing ability to cope without support? (And to be fair, my line runs horizontally, not vertically, to avoid the idea that Levels 2 and 3 are ‘beneath’ Level 1).

Ableism is also levelled at the idea of defining people by their difficulties, but I think there is an important nuance here between ‘describing’, which is neutral, and ‘defining’, which carries a value judgement. The comedienne Francesca Martinez has a joke about why people judge her by what she can’t do because of her cerebral palsy, instead of by what she can: ‘Nobody says of [Irish President] Bertie Aherne, “Yeah, great President, but have you seen his golf? It’s shit!”‘ We should not be defined by our disabilities, that is true, but in a book about autism and how to help autistic people find peace in a neurotypical world, what else should I mention but the ways in which we are different from neurotypical people and the difficulties that can result from our interactions with mainstream, everyday neurotypical society?

Having lived with autism all my life, and suffered when I didn’t understand it or how it affected me, I don’t think it’s helpful to be unrealistic. It is a neurotypical world out there, not an autistic one, so it’s not belittling people to say that those of us with autism start out with a disadvantage that we need particular tools, techniques and skills to overcome. Nobody expects a wheelchair user to climb stairs, or a blind person to navigate a sighted world without a stick (although some do), so why should it be any different for a person with autism?

Don’t get me wrong, there’s a whole bunch of people out there who think autistic people should be wrapped in cotton wool and sheltered from the world, and I agree that that’s bad, because if you stop people from experiencing the negative things that can happen in life, you also deny them from experiencing the good; but equally bad are those who insist that something like autism is no impediment to anything, and you can do anything you want in life. No, you can’t. There will always be limits to what a person can achieve, and pretending there aren’t is disingenuous. That’s not to say a person with autism isn’t valuable for who they are, or that they can’t be incredibly successful in their chosen field – look at Susan Boyle, Guy Martin, Sir Anthony Hopkins and Greta Thunberg, for example – but finding out what you can do in light of your limitations is not demeaning a disabled person, it’s simply channelling their potential in the direction that maximises their chances of reward and minimises the risk of failure. I think that’s pretty good advice for anyone, autistic or otherwise.

To accuse me of ableism is also to overlook pretty much everything I say in the book about how people with autism are different, not worse, than neurotypical people, and should not be judged by what they can and can’t do. In particular, I use a model I made up called the Mini and the Tractor. When those of us with autism are born, we’re given a Mini, while neurotypical people are given tractors. On the roads – those things we can do – we speed along quite happily, and are often able to overtake people in tractors. But either side of these roads are ploughed fields – the things we can’t do. While neurotypical people drive through them at the same speed, people with autism struggle, and bog down and get stuck, and often need a person with a tractor to come along and pull their Mini through the field and put them back on the road. We aren’t worse than neurotypical people – far from it – we simply have different wheels suited to a different surface.

How someone could have read that and inferred from it that I think people with autism are inferior to neurotypical people, or that people with ASD Level 3 are less valuable than people with ASD Level 1, is surely finding things to confirm your preconceptions – that I’m ‘ableist’. Indeed, the critic has read into my text a value judgement – better and worse – that I don’t think the material suggests.

So where has the accusation come from?

I don’t know the reviewer, of course. I’m sure they genuinely think my views are ableist, but I’m not sure they have the same interpretation of what it means as I do. What I suspect is that, like much of modern discourse, they’re coming at it from the viewpoint of intersectionality – that society is structured as a matrix of domination, with privileged groups oppressing others who need to fight back. At its most simplistic, this means dividing the world into powerful oppressors and powerless victims, and I think people are always on the lookout for examples where they can fight on the behalf of the oppressed by using words that end in ‘-ist’ and ‘phobe’ – like, say, when an author says something that appears to objectify disabled people. The disparity of our perceived power relations – me as an author, the privileged oppressor, imposing my view on the powerless reader, the oppressed – might be what triggered the accusation of ableism.

But here is my objection to that whole ideology: I am autistic. I am the very group I am oppressing. I am able to speak about autism because I am autistic, so it is my status as an (apparently) oppressed person that enabled me to become an author and thus have the power to oppress myself with ableism! Given that the average non-fiction book sells a mere 2,000 copies in its lifetime, netting its author around £1250 spread across a number of years, I think that might be overestimating my power in any case.

I guess, really, the ultimate test is to ask someone from the oppressed group how they feel, since apparently the best judge of whether oppression exists is the person feeling oppressed, rather than any external measurement or evidence, even if others in that group have a different opinion.

So, Gillan, as an autistic person and thus a member of an oppressed group, do you feel the idea of an Autism Spectrum that runs from ASD Level 1 (high-functioning) to ASD Level 3 (low-functioning) is ableist and discriminates against you as an autistic person?

No.

Well, that settles that then.

Still, if someone thinks the best way of defending the right of disabled people to define the terms of their disability is by criticising a disabled person for defining the terms of his disability, who am I to argue with such logic?

(Oh, and if you want to work out your intersectionality score, and thus your level of victimhood compared to others, just use this handy Intersectionality Calculator).

Bullying: An Undiagnosed Aspie at School

My little (neurotypical) daughter is now three, and by January we have to select her schools. I had thought that this would be easy – have a look at them, decide which is best, and apply – but what I hadn’t counted on was how much my own experiences of school would colour my thinking, or how this process would stir up all the unpleasant emotional and psychological shit that has lain buried inside me for twenty years.

There are two schools in particular that we’re looking at, one small and with more of a personal focus, the other big and more academic. Both of them fill me with dread.

At the big, academic school there’ll be plenty of kids for my daughter to make friends with, but the environment is less supportive. In the small school, she’ll be better looked after, but if the other kids turn on her and she’s the one who’s the outsider then there’ll be nowhere to hide.

In all honesty, I don’t care about the academic standing of either – I care about my daughter’s happiness and emotional wellbeing, and the damage that can be caused by making the wrong decision.

As you’ve probably inferred by now, I hated school. I found the other children silly and immature. I couldn’t relate to them or their games. I preferred hanging around with the teachers and the dinner ladies. Sometimes I took teddy bears to school and played with them instead because they were easier to understand. That’s when I wasn’t collecting insects or classifying all the trees, or crying all the time at the slightest provocation.

When I was seven we moved house and I changed schools. I decided that I didn’t want to be known as a crybaby, so every time I got upset I forced the feelings inwards. I hated sitting with the other kids in lessons, preferring a seat by myself while all the rest were chatting and playing. At breaktimes I’d join in with the games, but mostly I’d keep up a stream of narration, pretending I was a commentator observing the people around me. Always separate, even when I was part of the whole.

I always preferred my own company. If it was a wet break I  could stay in and draw a picture or read a book – infinitely better than mixing with others. People made fun of me for my interests and good behaviour and excellence at schoolwork, laughed at my complete lack of sporting prowess. I had spiky hair, goofy tooth, and massive plastic glasses. Whenever somebody called me names or wouldn’t let me play with them or tried to force me into being naughty, I inwardly wept.

Being told off by the teachers – normally for things that other people had done and blamed on me – was an indignity I dwelt on for days. That was when I wasn’t correcting their spelling, pointing out mistakes in the maths textbooks, or telling them every intimate detail of my life.

Every morning I’d tell my mum I had a funny feeling in my tummy, and every morning she’d say, ‘Just go and see how you feel. If it gets worse they can always ring me to come and pick you up.’ But of course, they never did.

I always knew that I was different. I was constantly moody, constantly confused and just wanted to be left alone. But none of that really bothered me until I was ten, when I started to want friends but realised I was unable to have them.

My brother always seemed to have it easier. He just drifted through school without any struggles. He could make friends with anybody, and normally did. He was always out on his bike, off to the cinema, heading to parties. Sometimes my parents made him take me along, something he hated only slightly more than I did – I had my pride.

I often asked when I would have friends like my brother did. ‘When you get to secondary school,’ my mum used to say. ‘You’ll make plenty of friends there.’

My father was less optimistic. He constantly stressed how I needed to learn how to get on with people or else I wouldn’t cope with life. I think they were terrified that I was different and desperate for me to be normal. They started sending me to Christian boys’ camps in the summer, hoping I would build my character and somehow learn to socialise. They were abject lessons in just how incapable I was of functioning in a group of my peers. I came home from them bruised and scarred and even more aware of my utter ineptitude.

It was when I started secondary school at age 12, an institution of 1500 kids that taught you your only value was in your grades, that everything went to hell. Lessons were bad but survivable – people would steal my pencil case, snap my rulers, stab me with compass needles and squirt ink on my shirt, but there was never a shortage of people wanting to sit by me so they could copy. It was the breaktimes that broke me down.

I hung around with people I’d been to middle school with – people who hadn’t actually liked me for the past few years and now, to impress their new friends, showed off their disdain at every opportunity. I was the guy to push, the guy to throw things at, the guy to trip up in the mud; I was the guy to call names, to run away and hide from, to spread rumours about and laugh at. I wasn’t handsome or cool or popular – I was what they called a ‘gorm’, short for ‘gormless’ – a nerdy, geeky swot, teacher’s pet, loser. Sometimes they’d take turns spitting on me – thick, snotty loogies on my bag, on my back, even in my face.

If ever I stood up for myself, which was rare, I’d make threats I had no possibility of following through with. They’d simply threaten to beat the crap out of me, so I did nothing, and let my pride, my dignity and my self-esteem sink into the earth beneath my feet, where I wished I could curl up and die. Looking back, I’d have preferred them to beat me – those wounds heal. The wounds they gave me can last a lifetime.

Those twenty minutes a day killed me.

Luckily, we lived opposite the back gate of the school so I was able to go home for lunch. That was my lifeline. Without it, I don’t know how I’d have survived. I sat by myself, ate some lunch, recharged my batteries to face the afternoon. And, most importantly, I didn’t have to mix with anybody else.

I put up with this crap for a year. One whole year. Until, one week before the school year ended, I started hanging around with a boy that I will call Judas.

I don’t know how it came about that we hung out together. We sat next to one another in most of our classes, and I thought he was pretty darned awesome. He was intelligent, like me, but he was also sporty, which made him well-liked. For whatever reason, we hung out together at morning break, and then the next day. The following day, I even stayed at school for lunch, and the next, before we broke up for the summer holidays. For four days I had a friend.

My God, I was happy. If this was what it meant to have a friend, then I now knew everything I’d been missing out on, and everything that everyone else seemed to have. In the rain-drenched misery among the bullies at boys’ camp, I looked forward to the new term, not with horror and apprehension, but with a sense of anticipation, because now I had a friend!

The first day back at school, Monday morning, second period – art. I sat next to Judas like the cat that got the cream. I was so excited to catch up, so excited for the future. It felt so good to be normal.

When the bell went for morning break, I almost burst with excitement. He turned to me and said, ‘See you after break,’ and walked out of the room.

I thought it was a joke. I followed him at a distance, and when he stepped outside I jumped out at him.

‘Ha ha, surprised you!’

He glared at me. ‘I said I’d see you after break.’

‘Yeah, funny,’ I said, still thinking it was some kind of joke I just didn’t understand.

He stopped walking. ‘No, I’m serious, Gillan,’ he said. ‘Just piss off. I’ve got some new friends now.’

And he walked on.

I followed him again, unsure just what was happening. He walked up to a group of lads – football lads. He’d made new friends over the holidays and they didn’t include me.

I don’t think I have ever felt so alone.

Near where they stood were my old ‘friends’. I wouldn’t go back to them, no way. I was desperate, but not that desperate.

I saw a kid I’d known at middle school – Lucifer, we’ll call him – with a group of kids I didn’t know, and decided I’d try to hang with him, just for today, just so I wouldn’t have to be alone. In truth, he was a bully and had been the scourge of the middle school, but he’d always gone easy on me, possibly because there was no fun in beating on the developmentally disabled kid, albeit undiagnosed, and possibly because the one time he’d tried to put me in a headlock, I’d panicked and in a flurry of punches knocked him on his ass.

Anyway, Lucifer and his friends were all eating slices of pizza from the cafeteria. I was caught in the midst of despair, and not having a clue about how to approach people, I simply walked straight up to him and said, ‘Lucifer, can I have some of your pizza?’

He reacted as though I’d asked to sleep with his sister. I’ve never seen a face show such disdain. With an evil, mocking sneer, he hissed, ‘You fucking skank,’ and with a wall of expletives he ripped a chunk off his pizza and threw it in my face. His friends laughed, and some smiling, some sneering, ripped pieces off their pizzas and threw them at me too, shouting and swearing and laughing.

Everybody turned to look – my old friends, Judas and his new friends – everyone.

I did what I’d sworn not to – I cried. But I hid it well. Holding my head up high, I turned and strolled away from the mockery, bits of tomato sauce on my cheeks, pretending I wasn’t humiliated and utterly heartbroken. I headed for the nearest toilets and cried my eyes out. (Years after this, whenever this group saw me they’d throw things at me and call me a skank. Once when I was 17 they came upon me in the street, shoulder-barged me into the road and threw cigarette lighters at me).

After break, I went back to art and Judas sat down next to me as though nothing had happened. ‘Why can’t I hang around with you at break?’ I asked.

‘You wouldn’t fit in,’ he said. ‘They wouldn’t like you.’

And that was that.

The rest of the week, I hid in the toilets, hid in the bushes – I didn’t want people to see that I was entirely on my own. One day I even tried to join the group regardless of Judas’s warnings. They couldn’t physically push me out, could they? It turned out that they could. After being frogmarched across the playground, I decided not to repeat that indignity.

It was with a heavy heart, leaden legs, that the following week I walked up to my old ‘friends’ at breaktime. ‘Oh, you’re back,’ they said. And things resumed as though I’d never been away. Because being bullied was better than hiding in the toilets.

About ten months later, the school decided to build a new block and new playground. Because of all the builders on site, it was thought prudent, for health and safety reasons, to shrink lunchtime from one hour to just 25-minutes. As a result, they revoked all the lunch passes. My 20-minutes of hell each day was going to be 45.

Unable to cope with being bullied 3 hours and 45 minutes each week, I spied on the other friendship groups, found one I thought I might be able to join – a mixed group, some of whom were in my classes – and after a week trying to build up the courage, I approached one of the members and asked if I could hang out with him and his friends at breaktime.

‘Sure, whatever, I don’t care,’ he said, and I was in.

Things didn’t go exactly to plan. I was so desperate to fit in, so terrified of being rejected, that I lost the ability to speak. It was weeks before I managed to say a single word. I stood at a slight remove from them, waiting my chance. Every time I opened my mouth to speak, this little voice in my head screamed, ‘DON’T SAY THAT THEY’LL THINK YOU’RE WEIRD!’ and I clamped my lips together. Sometimes I managed to think up something decent, but by the time I worked up the courage to voice it, the conversation had moved on and it was already too late. So I stood, in silence, like the number one buzzkill, so afraid they wouldn’t like me that I guaranteed they wouldn’t – the dictionary definition of a self-fulfilling prophecy.

Within the first week I realised it wasn’t going to work. While not as bad as my old ‘friends’, my new ‘friends’ didn’t exactly make me feel welcome. One told me to my face, repeatedly, that she hated me because I was so weird and she wanted me to go away. One used to stuff her rubbish in my shirt pocket as though I was a dustbin. They loved telling me I wasn’t actually part of ‘their group’. I was the butt of every joke. I smiled, as though I was in on it, when in fact I knew they were mercilessly mocking me.

I knew from the start that it wasn’t going to work. I hung around with them for a year and a half. Breaktime and lunch. Forty-five minutes a day. Because I had no one else.

You don’t have to be a psychiatrist to know what that kind of thing does to a person. My self-esteem, self-identity, my confidence – my very value as a human being – they all went away. It got to the point where I was too afraid to put up my hand in class, even though I knew the answer, because people would look at me and I couldn’t bear their judgement. Looking back, I’m surprised I didn’t become a statistic, if you catch my meaning.

And throughout this time, Judas still sat next to me in every class we had together, and listened sympathetically as I told him of my loneliness, and made all the right sounds and facial expressions when I told him I was being bullied, and watched as I shrank into a shell of my former self, and he did nothing. Except, that is, on the days when I couldn’t face them and so wandered about alone – he’d always be sure to tell me he’d seen me wandering around on my own, and that if he’d noticed I was being a loner then other people would too, and perhaps I’d better go back and hang out with the bullies again. Because, evidently, it’s better to be bullied than have no ‘friends’.

I asked him repeatedly if I could hang out with him at breaktime. I begged – I told him I wouldn’t even have to say anything, I’d just stand there so I didn’t have to be alone. His answer was always the same. ‘You wouldn’t fit in.’ For a year and a half.

What hurt the most was that he was my best friend in the classroom. He was my lab partner, my vocab buddy. Every project we’d do together, every history assignment, every book report. Art, music, craft, IT. But other than those four days in our first year, outside of the classroom he wanted nothing to do with me.

I loved that guy for three-and-a-half years, right up to the moment I realised that I hated him far more than any of the bullies, and stopped sitting next to him in class. He never spoke to me again, even though we went to the same VI Form. I was amazed by how quickly and easily I was replaced, though it should have come as no surprise. I clearly meant nothing to him.

About the same time, I decided I couldn’t go on anymore as I  had. I spent the last six months of my time at that school hanging out with the band geeks who congregated on the benches at breaktime with their inhalers and head braces and vocal jazz stylings. I didn’t particularly like them, but it was all about survival by this point, and they weren’t really in a position to bully anyone. Luckily, by this time, the block was built and I could go home for lunch again, because all of them had orchestra, and music lessons and choir practice at lunch.

And so I survived, in body if not in mind. I left school, and I buried these experiences and haven’t spoken to anybody about them for twenty years now. I wonder if all the tattoos and piercings I got in my late teens, and all the challenges I undertook in my early twenties – rock climbing, bungee jumping, parachute jumping, scuba diving, tall ship sailing, backpacking – were a way of trying to work through all that anguish and self-hatred. To punish myself and see if I really mattered.

I thought I’d got over. Thought it was left in the past. Until I’ve had to start looking at schools for my little girl. And I realise I’m not over it at all.

I can think of my best friend telling a thirteen-year-old me to piss off because he’s found new friends, and it still hurts. I can think of reaching out to another for help in my lowest moment, only to have him literally throw it back in my face, and I still cringe at the way he looked at me. And worse, I can think of repeatedly begging a friend to save me from my bullies only to have him refuse because I ‘wouldn’t fit in’, but instead of the despair I felt at the time, now I feel only anger.

I never dealt with any of these feelings. I live my life looking forward, not back. What’s in the past no longer has the power to hurt you – or so I thought.

So perhaps you’ll understand why I don’t care about the league tables my mother-in-law sends me, and why I don’t care about the Ofsted reports, and why I don’t care if every one of the school’s pupils fails their SATs. The only thing I care about is if my daughter will be happy at school. Because if she’s not, all the league tables and Ofsted reports in the world couldn’t make me send her there.

My Life With Autism

For anybody in the Dorset/Hampshire borders region (or further afield, I’m not fussy!), I’d like to announce that I’m talking at an event on Tuesday evening, June 6, entitled ‘My Life With Autism’.

It’s hosted by Autism Wessex at Portfield School from 7:00-9:00pm and it’s free, but as spaces are limited you need to book tickets from the following link: Get Involved.

I will be talking about my journey to diagnosis, the difficulties of growing up undiagnosed, work, parenting, and day-to-day life. Along the way I’ll provide hints and tips on living with the condition that have proved helpful in my own life. There will also be the opportunity to ask questions.

I hope to see some of you there and thanks for reading!

Parents with Autism

I have mentioned before the overwhelming focus on children in the literature on autism, and the corresponding lack of study on adults with the condition. Indeed, researchers know next to nothing about autism and sex, and autistic parents, which seems odd given that one often leads to the other and the consequences can be profound and life-long.

Studying the issue of parents with autism would be helpful in two major respects. First, it would ensure that autistic parents received appropriate guidance and support for the demands of parenting, which, let’s face it, is difficult whether you are on the spectrum or not. Secondly, it might help to normalize the notion of autistic parents and remove much of the stigma surrounding this section of the community.

If you go online, much of what is written about autistic parents is by adult children of these same parents, and almost universally the experience seems to have been less than positive. Some say allowing autistic parents to raise neurotypical children is a form of abuse, and others that autism constitutes a ‘parenting disability’. There are even sites that claim autistic parents inevitably raise emotionally and psychologically damaged children. As an autistic parent, with an autistic wife, and raising an apparently neurotypical daughter, all I can say is: ouch.

On the other hand, I neither agree with nor believe any of these statements. For one thing, many of these parents haven’t received a diagnosis of autism by any other authority than their children, who might not necessarily be able to disentangle autism from other conditions such as narcissism, avoidant personality disorder, OCD, and just being a plain bad parent; and for another, people who have had an unhappy childhood and a strained relationship with their (autistic) parents are far more likely to write a blog about it than people who had a happy childhood and good relationship. Thus the picture is skewed away from reality because of the very lack of objective input from academic researchers mentioned above.

It’s also important to note that these apparently awful autistic parents had not received a diagnosis and therefore did not know they were autistic – and to me, knowing is everything. If you know you have autism, you know to work on certain areas in which you’re weak; you know to regulate your behaviour in order to meet the needs of your child; and you know to get help and advice from others. Autism is therefore no barrier to being an effective parent.

My belief is that your parenting ability comes down to you as an individual. There are some fantastic autistic parents out there and some terrible neurotypical parents, just as there are terrible autistic parents and fantastic neurotypical parents. The point is, a diagnosis or otherwise doesn’t dictate an individual’s ability to parent or the long-term outcomes for their child.

I was lucky enough to be interviewed by Spectrum Magazine for an article on parents with autism that discusses these very issues. It is well worth a read, and contains some beautiful photos of my wife and daughter, and unfortunately some of me as well. Here’s hoping that these holes in the story of autism will soon be filled.

Children with autism become adults with autism

There is a deductive argument so straightforward and sound that all intelligent, educated, free-thinking people should be able to grasp it with ease. It’s so patently obvious that I shouldn’t even need to write it down because we all just know it to be true. I will, however, because it is necessary for what follows.

  1. Autism is incurable.
  2. Children grow up.
  3. Therefore, children with autism become adults with autism.

I mean, it couldn’t get much simpler than that. You’d have to be a philosophical contortionist to somehow argue against it.

And yet, looking at the way that autism is treated, represented, categorised, theorised and mythologised, you’d be forgiven for thinking autism is a childhood disorder that disappears on your eighteenth birthday. You step up to your birthday cake a person with autism, and as you blow out the candles, lo and behold, you’re neurotypical! Hallelujah!

It strikes me as bizarre that even though we all know that children with autism become adults with autism, the latter group is virtually invisible. From the services available, to funding, to treatment, to research, to specialists, to TV programmes, to books, to websites, to expertise, it’s all heavily skewed towards children with the condition. Much of it simply vanishes as soon as a person reaches their majority, as though nobody realised that these children with needs would one day become adults with those same needs that are now, sadly, unsupported.

Go look at 100 books on autism, you’ll find that around 99 of them have children or childlike images on the cover, and contain chapters dealing with school and adolescence and how you can help your child make friends. Research the statistics on autism and you’ll find statements like, ‘1 in 88 children has autism’, when surely they mean 1 in 88 people has autism? Then try and find academic studies on autism and sex or on parents with autism and you’ll find it pretty damned hard, because the experts don’t seem to realise that autism extends beyond the first eighteen years.

When, as an adult, I spent a decade seeing psychiatrists and psychologists under the Mental Health Team, not one of them ever brought up the possibility I might have autism. When I asked to be seen by an autism specialist, I discovered there was one person qualified to diagnose adults in the whole of Dorset – a county with a population of almost 800,000 people – and she could only devote one day a week to this. When I was finally diagnosed with autism at 28 (and immediately discharged by the Mental Health Team because ‘autism isn’t a mental illness’), I went to the Learning Disabilities Team, to be told that all of their support services were for children with autism, and they had neither the funding nor the expertise to cater to adults. So that was that.

But the greatest irony, and to me the greatest illustration of this very real problem, is the book I had published last month. Now, I am incredibly grateful that it has been published and I’m gratified to learn it is helping people, but I wrote it specifically to address a shortfall in the autism literature, namely, people diagnosed with autism as adults. The book is entitled An Adult With an Autism Diagnosis. It is written for adults with autism, about adults with autism by an adult with autism. So where does it appear on Amazon?

Here’s the directory information: Health, Family & Lifestyle > Pregnancy & Childcare > Children’s Health & Nutrition.

Ever get the feeling you don’t exist?

An Adult With an Autism Diagnosis

Well, it’s here: today my book, ‘An Adult With an Autism Diagnosis: A Guide for the Newly Diagnosed‘ is released into the world. You can buy it from Amazon by following one of these links: Amazon UKAmazon US, or from your regular book supplier.

Here is the blurb:

Being diagnosed with autism as an adult can be disorienting and isolating; however, if you can understand the condition and how it affects perceptions, relationships, and your relationship with the world in general, a happy and successful life is attainable. Through an introduction to the autism spectrum, and how the Level 1 diagnosis is characterised, the author draws on personal experiences to provide positive advice on dealing with life, health, and relationships following an adult diagnosis.

The effect of autism on social skills is described with tips for dealing with family and personal relationships, parenting, living arrangements, and employment. Important topics include disclosure, available resources, and options for different therapeutic routes. On reading this book, you will learn a lot more about the autism spectrum at Level 1, be able to separate the facts from the myths, and gain an appreciation of the strengths of autism, and how autism can affect many aspects of everyday life. Drawing from the author’s lived experience, this book is an essential guide for all newly diagnosed adults on the autism spectrum, their families and friends, and all professionals new to working with adults with ASDs.

So, why did I write this book? The short answer is that when I was diagnosed with autism at the age of 28, having only heard of Asperger’s Syndrome and high-functioning autism a year previously, I was sent away without so much as a leaflet to explain what it was, why I had it, how it would affect my life, and why it had taken so long to identify. I had nobody to talk to – nobody knowledgeable, at least – who could help me come to terms with this life-changing news.

Like anybody, I turned to books and the internet. I discovered, much to my dismay, that books on autism seemed to fall into three categories: those for autistic children; those for parents of autistic children; and those for healthcare professionals working in the field. There was very little about adults with the condition and nothing for the many thousands of people diagnosed each year as adults.

The internet was worse. There were dozens of sites, and now hundreds, if not thousands, offering conflicting, confusing, inaccurate, unreliable, opinionated and impenetrable information and advice, often littered with jargon and insider knowledge, with no explanations for the layperson. I therefore struggled to accept the diagnosis, to make sense of where I now found myself, and to understand what any of it meant for my future.

I wrote this book for people who find themselves in a similar situation, a one-stop shop for those newly diagnosed with Asperger’s and ASD Level 1. It is not exhaustive, not ‘the only book on autism you will ever need’, but it contains answers to everything I wanted to know when I was first diagnosed. It is designed to help explain the basics, untangle the jargon, and describe in clear and plain terms how autism might affect the various parts of your life.

If this book can help just one person avoid some of the confusion and grief that I went through upon being diagnosed, if it can help them learn about their condition and be able to see the diagnosis not as an end but as a new beginning, and if it can make them feel not quite so alone in the world, then the effort will have been worth it.

Happy reading!

Gillan Drew

 

Failure and success in writing

Regular readers of this blog might have noticed that the frequency of posts has dropped off lately. For this I must apologise and explain.

In my core I am a writer. Ever since I was a child, four or five years old, I’ve wanted to be a writer. I always said I’d write a book one day, and then when I was eight I wondered what the hell I was waiting for and started. The result was Mystery of the Samurai Kidnapper. Needless to say, it sucked, but I was hooked.

I wrote all kinds of stories and read everything I could – action, adventure, crime, horror, science-fiction, war. When I was sixteen I began writing seriously, and at eighteen started sending samples to magazines and agents and publishers.

Skip forward eighteen years and I’ve written nine books, several scripts and dozens of short stories – over two million words of creative writing. I’ve come close a few times – I had a call from Ian McEwan’s agent once to discuss my novel The Butterfly Collection, and nearly nabbed an agent from Blake Friedmann for Beyond Wild, only to fall at the final hurdle – but other than a few short stories, I’ve been remarkably unsuccessful at getting into print. It goes with the territory.

But earlier this year I felt I was on a roll. I entered twelve writing competitions. Normally I just take a punt, but these were twelve of the best best things I’ve ever written – I actually thought that this time I had a shot.

Some were for short stories, some for the first 5000 or 10,000 words of a novel. I worked like a dog, polished them to perfection, then waited with bated breath. I hoped to win, but I knew I’d be happy just to be short-listed in one of them. It would make all the years of sacrifice worthwhile.

Over the past few months, the competition results trickled in, one at a time. And with each one, my hope and joy gave way to bitter disappointment. I didn’t win any. I wasn’t short-listed for any. I wasn’t even long-listed for any. It might sound like sour grapes, but that last rejection in early July crushed me.

Rejection is part of being a writer, and you have to be resilient. To put it into perspective, JK Rowling recently spoke of her pain at having Harry Potter rejected twelve times. When that last competition declared, it brought my rejection count up to 327.

As a father, I have to act happy for my child. I have to make out like everything’s fine and dandy and be the same as I always am. So I did. But inside, I was broken. It took all my focus and energy to hide it. The last thing I wanted to do was write this blog.

So I sat, and I festered, and I wondered if I would ever bother to write again.

But, to quote a cliche, it is always darkest before the dawn.

I’ve been awarded a publishing contract! It’s for a book I’ve written on living with autism, provisionally entitled An Adult With Asperger’s: A Guide for the Newly-Diagnosed. It’s being published by Jessica Kingsley Publishers and will be coming out in the spring, and so I’m working around the clock to get the final draft ready in time.

As you can imagine, my mood and my self-esteem have both improved no end. I’ll try to keep posting every week on this blog as normal and I’ll keep you posted on the book as more details emerge.

I guess the moral of this story is: never give up, because you never know what’s around the next corner.

Thanks for reading,

Gillan Drew, author (yay!).

MMR and Autism

I’ll lay out my position right at the start so those who have already made up their minds to the contrary are prepared for my vitriol: MMR does not cause autism. The MMR/autism link has no basis in reality. As an autistic father of a neurotypical child who has her MMR tomorrow, I am sick to death of people telling me that vaccinations cause autism, and I will therefore be disparaging towards the anti-vax movement and, by extension, anti-vaxxers as a whole. You have been warned.

There. Now we can get started.

To the average man on the street, the letters MMR and the word autism have been inextricably linked since the early noughties. The media had a field day whipping up a national health scare, frightening parents and misreporting the facts. As a result of this, there seems to be a general undercurrent of feeling that MMR might cause autism, that scientists don’t really know the answer, and that the jury is still out on whether it’s safe or not.

Not true. The jury is in. The jury has been in for years. But news stories about all the studies published in the past decade showing how MMR doesn’t cause autism are far less newsworthy than sobbing, guilt-ridden parents with shattered lives bewailing the fact that a vaccination might have damaged their baby. Thus the one highly questionable, discredited and fraudulent study suggesting a link between MMR and autism has received massive amounts of media coverage, and the rest have received pretty much none at all. And that makes the press equally culpable in the propagation of the anti-MMR scam.

The fact is, the jury should never have been out in the first place as there has never been any evidence to suggest MMR causes autism beyond gut feelings and anecdotes. The thing is, I understand the parents jumping on the anti-vaccination band wagon. To discover your child has autism is obviously a big thing, and when life deals you a random blow, it’s human nature to look around for someone or something to blame. Thanks to a man named Andrew Wakefield, the object of blame became the vaccination for measles, mumps and rubella.

‘Who is Andrew Wakefield?’ I hear you cry. It might surprise you to learn that he was the lead author of the paper published in the Lancet in 1998 suggesting the link between MMR and autism. Surprising, because perhaps you thought there were numerous studies and a body of evidence that pointed towards this link, rather than one solitary paper based on a test group of a whopping twelve subjects. One paper describing twelve autistic children, eight of whose parents blamed MMR for their autism, provoked a total of 1257 news articles in 2002 alone. That’s like responding to the neighbour’s kid throwing a snowball at you with a full nuclear strike.

Now, I don’t need to tell the intelligent reader that a sample of twelve children is ridiculously small to extrapolate a global theory of cause and effect. Nor do I need to point out that one study, the results of which were never repeated and which were outright contradicted by various meta-analyses of massive data sets, should be described as ‘unreliable’ at best. What I do feel I ought to point out is that not only was Wakefield’s study an anomaly, it was also found to be fraudulent.

There are two key facts you need to know about Andrew Wakefield that might help you judge the efficacy of his work. Firstly, he was paid £435,643 by trial lawyers who wanted evidence to suggest MMR was unsafe, with payments starting a full two years prior to his paper being published. Secondly, he applied for patents for his own vaccine to rival MMR. Therefore, he was paid lots of money to try and prove MMR caused autism, and if he succeeded, he would make tens of millions from his own vaccine. This is what we call a ‘conflict of interest’, something he hid from the Lancet, who said that, had they known, they would never have published the paper.

What’s worse, it was discovered that many of the results in the paper had been manipulated. Diagnoses were adjusted and dates were moved in order to strengthen its conclusions that autistic symptoms started directly after the children received the MMR jab. Furthermore, the parents of eight of the twelve children in the study were already seeking compensation for MMR damaging their children before the study took place. Indeed, they were represented by the same lawyers who paid Wakefield to prove MMR was unsafe. Thus the selection of subjects for the study was far from random. That’s before we mention that Wakefield formed a partnership with one of these parents to market autism tester kits on the back of an MMR scare to rake in a predicted $43 million a year. To say the conclusions of this paper were ‘unreliable’ is an understatement.

Long story short, the General Medical Council said Wakefield had acted dishonestly and irresponsibly, and that his study was improperly conducted. He was found guilty of serious professional misconduct on four counts of dishonesty and was struck off the medical register. The Lancet then fully retracted the paper. Case closed.

Except it wasn’t, and it isn’t. The damage was done. In people’s minds, MMR might cause autism, and so rates of vaccination fell. According to the Psychiatric Times, as a result of Wakefield’s paper the number of cases of measles in the UK rose from 56 in 1998 to 1348 in 2008, with two deaths. Similarly mumps, very rare before 1999, was up to 5000 cases in January of 2005 alone. The MMR scare therefore caused some very real consequences for thousands of families.

I don’t want to ram the evidence down your throat since it’s ridiculously easy to Google any number of studies rejecting the link between MMR and autism, so I’ll just mention two. A study in Denmark including all children born between January 1991 and December 1998, covering 440,655 children vaccinated with MMR and 96,648 unvaccinated found no difference in the rates of autism or autism spectrum disorders between them. Likewise, a 2012 meta-analysis by the Cochrane Library covered 14,700,000 children and found no causal link between MMR and autism. Which is much more conclusive than a study carried out on a sample of twelve.

Yet despite this evidence, anti-vaxxers still maintain a link between vaccination and autism. They claim that rates of autism are increasing and that their child’s or their friend’s child’s symptoms started around the time of the MMR jab. There must be a link, right?

It’s true that rates of autism are increasing, but not because of an increase in the actual incidence of autism – rather, better screening methods and increased public awareness of autism mean more people are being diagnosed with it. And autistic symptoms often kick in around twelve months – right at the time they have the MMR jabs. As I said before, it’s understandable that parents of autistic children might want to blame something for their child’s condition, however inaccurate that might be.

What I find wholly unacceptable, however, is for celebrities like Jenny McCarthy, Jim Carrey, Charlie Sheen , Billy Corgan, Robert De Niro and Donald Trump to repeatedly preach about the dangers of vaccination, ignoring any and all scientific evidence to promote scare stories and misinformation, which has led to epidemic levels of measles and mumps. Why people would choose to listen to a Playboy model, Ace Ventura: Pet Detective, a drug addict, a Smashing Pumpkin, a man who strapped a boob to his chestand an orange-skinned capitalist who makes sexually suggestive comments about his own daughter, rather than doctors, scientists and the National Autistic Society, is beyond me. In regards to their views on vaccination, these people are more similar to Boko Haram and the Taliban than they realise.

Now, in order to provide balance, I have to point out that no medical intervention is 100% safe. Around 1 in 5000 children who have MMR will suffer febrile seizures, while 1 in 40,000 will develop immune thrombocytopenic purpura and 1 in a million will contract meningitis. However, if you compare this to rates of complications from measles, mumps and rubella – 1 in 1000 with measles will get meningitis and 1 in 5000 will die, while 1 in 40,000 with mumps loses their hearing and 1 in 10,000 will die – then MMR is much safer than the alternative.

I have no qualms or doubts about having my daughter vaccinated. If you’re undecided, that’s okay. All parents have the right to choose what is best for their child. Do some research, weigh up the benefits and the risks. But make sure you choose with your head, not your media-induced irrational fear of giving your child autism. Because MMR does not cause autism.

And don’t get me started on ‘Why can’t we have them as three separate vaccinations?’…

Autistic Building Blocks

There’s an episode of Scrubs in which Dr Cox’s infant son has a playdate with a rival’s child. After seeing the other boy’s precision with building blocks, Dr Cox states that kids of that age shouldn’t be able to do that, leading him to suspect the boy has autism. And of course, since Dr Cox is like House, only with a larger ego, he’s absolutely right.

Far be it from me to take facts about autism from a TV show, particularly one that perpetuates the myth you can restart a stopped heart with a defibrillator (shocking revelation: you can’t!), but it’s lingered in the back of my mind for years. So when Izzie started playing with building blocks a few weeks ago, I watched her very carefully.

Actually, that’s not what happened. I was meant to watch her. Instead, as an autistic guy myself, every time she started to play with them I couldn’t resist the opportunity to shoulder her aside, organise the blocks by colour and shape and build towers all around the lounge. To my annoyance, Izzie kept knocking them over and mucking up my neat piles and throwing the bricks into her ball pit. I started to design stronger towers, pyramids, all kinds of defensive structures to protect my colour-coded edifices. Then, after about a fortnight of this, I realised I was getting obsessive over a baby’s building blocks and really ought to let Izzie play with them. Then I watched her.

Mostly she was destructive with them, smashing them together, bashing them against the furniture, throwing them at the wall, and stuffing them into her mouth. Just like a baby. Phew.

But then she started to play with them differently. Starting a couple of weeks back, she would empty them out of her trolley one at a time onto the carpet and then very carefully put them all back in again. After a few days of this, she decided that was too easy. From then on she’d wheel the trolley over to the coffee table, and one by one she’d put the blocks on top. Once she was done, she’d take them down and put them back in the trolley, walk over to her toy box and repeat the process. Stacking, unstacking, loading, unloading like a particularly conscientious warehouseman.

I consoled myself that she wasn’t able to make towers out of them yet. That would be the time to worry.

Two days ago she managed to stack two on top of each other. By yesterday, her towers were up to three blocks. Today, she managed five. And that’s when alarm bells started to ring.

I mean, they weren’t very good towers – they were wonky and multicoloured and would fall over if you walked too heavily across the carpet – but they were towers nonetheless. Were these the skills Dr Cox was talking about, those abilities with bricks a non-autistic child shouldn’t possess?

It says on the Baby Centre website that at 15 months she should be able to start putting one block on top of another, and by 18 months might be up to towers of three blocks.

Izzie is ten months old.

IMG_1252
That’s the wrong colour, dumb ass!

So without any further evidence, I started panicking that ohmygod she’s autistic.

After a few minutes of reassuring myself that it’s okay, she’s happy and if she has autism, that’s just the way things are, I’m autistic, Lizzie’s autistic, and we’re fine, everyone has problems, neurotypical, Aspie or otherwise, I decided it might be an idea to research early signs of autism.

And Izzie has NONE of them.

Now of course, not every child with autism is going to have all the signs, and even if a child has many of them, it doesn’t mean they’re autistic, but for anybody who’s curious, these early signs of autism are:

  • Lack of eye contact (I never made eye contact as a child; I sometimes have to look away, the amount that Izzie stares at me!);
  • Failing to imitate social cues, like smiling back at you (Izzie smiles so much, I’m sure her face must hurt);
  • Not babbling to themselves or making noises to get your attention (Izzie is by far the noisiest person in my life);
  • Failure to respond to their name (Izzie comes when called, and if I say, ‘Where’s mummy?’ she looks right at Lizzie);
  • Not using gestures to point things out or respond to your gestures (Izzie’s favourite activity is pointing);
  • Disinterest in physical contact like cuddling or being picked up (if you don’t pick Izzie up, she climbs up your legs!);
  • Doesn’t want to play with others (Izzie is currently loving rolling balls to me and getting me to roll them back);
  • Repetitive interests, movements or behaviours (Izzie does seem a little preoccupied with food…);
  • Delayed motor development i.e. rolling, sitting, crawling, standing (Izzie rolls, sits, crawls, stands, swims, climbs and throws).

Conclusion: Izzie doesn’t have any of the classic signs of autism.

So why is she so advanced when it comes to building blocks if not autism? Who knows? Maybe she’s just really really freaking intelligent.