An open letter to the Mental Health Community

Dear doctors, psychiatrists, psychologists and other Mental Health professionals,

As somebody who accessed Mental Health services for much of his teens and twenties – and, depending on the person that I saw, was variously diagnosed with clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder and emotionally unstable (borderline) personality disorder, and prescribed all manner of antidepressants and mood stabilsers – may I begin by saying that I have nothing but respect for your profession. It is a very problematic and stressful area of medicine in which to specialise, and much of your work is more an art than a science. I am therefore fully cognizant of the pressures under which you work, and the difficulties that you face on a daily basis.

It is therefore with the best of intentions and sincere regret that I feel I must bring to your attention an area in which you could be regarded as failing in your duty of care. This is in the provision of services to adults with autism, particularly high-functioning members of the community, to whom your behaviour often amounts to nothing less than a flying kick to the balls – with both feet. Allow me to elucidate.

When I was working through my various (mis)diagnoses and battling the side-effects of my numerous sedating, mind-numbing and libido-crushing medications, I very helpfully had monthly reviews from a psychiatrist and weekly sessions from a counselling psychologist, such were my mental health difficulties. Indeed, they provided a measure of stability in an otherwise chaotic and trouble-filled life.

It was a little disheartening, then, when upon being diagnosed with Asperger’s Syndrome at the age of 28, I was immediately discharged by the Community Mental Health Team because ‘autism isn’t a mental illness’, and handed over to the Learning Disabilities Team, who said that ‘we have no services for high-functioning individuals’ and immediately discharged me also. This was ten years ago, and in all that time I have had no further input from the Mental Health Team or Learning Disabilities Team.

This makes me wonder, therefore, if you think that my clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder, and emotionally unstable (borderline) personality disorder were merely symptoms of autism, rather than separate but co-existing mental health conditions, or if you thought that all of my problems with mood, identity, anxiety and depression would simply vanish alongside the diagnosis of autism? Surely, you did, else it would have been unethical to discharge somebody who had been receiving mental health treatment for over a decade without ensuring they were fully ‘cured’ and no longer needed mental health input.

To make it absolutely clear, I am wondering whether you think that having autism precludes the possibility of a person having mental health difficulties too? Because that seems, to a layman, a little like washing your hands of people who need help simply because you can pass the buck and attribute all their problems to autism.

Allow me a further, more recent example. My wife also has a diagnosis of autism and we have two children. Of late, her mental health has deteriorated quite badly, which has had a deleterious effect on our marriage and my ability to support both her and our children. In brief, her moods swing like a yo-yo, from hateful and aggressive and irrational to childish and giggly and equally irrational, and back again in the space of ten minutes; her OCDs mean she spends five hours an evening searching for things she has lost; she misremembers what has been said, or makes things up and believes them; struggles to differentiate fantasy from reality; at times seems out of control; is paranoid about people conspiring against her, then contacts others to conspire against me; continually empties her bank account buying pink plastic toys for our girls (eight dolls houses, seven push chairs, fifteen pairs of shoes); sabotages everything good that she has going for her; asks me to move out and take the children and then tells me she can’t live without me; is suffering the worst confidence, self-esteem and anxiety crises of her life; shuts down and retreats into her own world if she cannot handle things; and is worrying all her autism-specialist support workers, who have seen her behaviour first-hand and believe it to stem from some mental health disorder underlying the autism.

Now, to get my wife to acknowledge she has a problem has been tantamount to climbing Everest, but with much help and support from Children’s Services, who are equally concerned about her, and the Health Visitor, who similarly agrees, we managed to get her to attend to an appointment with her GP. She was accompanied by her Autism Support Manager, an expert who has known her for ten years and says that her behaviour is not normal and not consistent with autism. Her GP agreed that her behaviour was very troubling and, given the impact it is having on our marriage and her ability to look after the children, made an urgent referral to the Mental Health Team to have my wife assessed.

I have been castigated by my wife’s family for seeking help, for talking to people outside the family, for being honest. They told me I have betrayed my marriage, I am going to have my children taken away, everything is my fault and I should never speak to anybody about anything, but I have done this through a genuine desire to save my marriage, to get my wife help and make things better for her by giving her access to the wonderful abilities of Mental Health professionals such as yourselves. I was sure that you would be able to help.

You can therefore imagine my horror and disgust to receive a letter from the Mental Health Team saying that, after receiving the referral, they had ‘discussed’ my wife’s case and decided she doesn’t have any mental health problems and therefore doesn’t need to be assessed and has been discharged. Clearly, then, you think that OCD is simply a side-effect of autism; rapid mood swings are a side-effect of autism; irrationality and self-destructive behaviour are side-effects of autism; paranoia is a side-effect of autism; depression, anxiety, low self-esteem and low confidence are side-effects of autism; and everybody who knows her and suggests she is suffering mental health problems is simply wrong, because she has autism and that trumps all. Indeed, I imagine that if she was hearing voices, or believed she was the Queen of Sheba, you would attribute that to her autism also. I would therefore like to ask: exactly what does it take for Mental Health professionals to see somebody with autism?

In society, those of us on the autism spectrum suffer a great deal of prejudice from people who see us as a label, a walking, talking diagnosis ripped from the pages of the DSM, instead of unique individuals. It is appalling that we must experience this same stigma from the Mental Health Community, who really ought to know better. Just because we have autism doesn’t mean we don’t also have mental health difficulties, and certainly should not give you the right to decline to see us simply because we have a developmental disorder to which you can ascribe all our problems.

I know that money is tight in this age of austerity and it helps your budget to fob off people with autism to other, less appropriate departments, but you might like to ask yourselves whether discriminating against an entire section of society – many of whom are struggling with various mental health disorders and very real distress and anguish – is right, or helpful, or fair.

In summary, I have sought your help because my wife’s mental health has been deteriorating, but you have refused to see her because you have decided all her problems are concomitant with a diagnosis of autism, placing the onus on me to hold this family together without your specialist assistance. I can only hope that her mental health does not continue to decline to the point at which even you can’t ignore it.

Warm regards and best wishes,

Gillan Drew


Takers and the Took: Asperger’s and Confrontation

Every day at the moment, I’m having between sixty and seventy arguments. Some are mild, a witty response to a provocative remark; some are longer, a tussle between players on opposite sides of the game; and some are long drawn-out, bloodthirsty affairs that leave souls destroyed and lives in ruins. Sixty to seventy, every single day.

But it’s not as bad as all that: they only take place in my head.

Like many people with Asperger’s, I have something of a phobia about confrontation, to the point of enduring any amount of abuse in order to avoid it. When it does happen, I avoid eye-contact and retreat into myself, and all the cogent, coherent arguments I could make evaporate. I have a visceral reaction – acid, like liquid copper, spreads from my gut, my chest tightens, my throat constricts, and the back of my neck starts to burn, because even though words can apparently never hurt me, I feel as though I’m being physically attacked. So I wait for it to end, mutter some platitudes that completely undermine my own position, and then slink away in a turmoil of guilt, shame and humiliation like a dog with his tail between his legs.

And afterwards, I dwell on it. For days. I relive the argument, word for word, re-experience the feelings, the fear and helplessness, think of what I could have said or should have said but didn’t because at the time all I wanted was to retreat. Like someone who has taken a beating, it takes me a long time to recover. It’s as though my psyche is bruised, and the world is now altered, everything out of place and dangerous until I manage to rebuild my walls and feel safe around people once again.

I worked in telesales for a time. Last thing on Friday afternoon, a stranger eviscerated me down the phone line. I didn’t sleep that night, couldn’t relax all the next day, had bad dreams on the Saturday, ran over the incident a million times all day Sunday, and on Monday handed in my notice and bought a plane ticket to New Zealand. Growing up, people said I was sensitive – too sensitive to survive in society. I think the truth is that I’m autistic, and my problems with social communication and social interaction, married to anxiety, insecurity and an obsessive nature, make conflict something I’m particularly incapable of dealing with.

So I tend to avoid confrontation, if I can. You might have heard the opposite to this – that people with Asperger’s are themselves argumentative, self-centred egoists who run rough-shod over the feelings of others – and this is also true, no matter how contradictory. So how does that work?

I can only answer for myself. When it comes to facts – or at least what I consider to be facts – my natural pedantry, honesty, commitment to accuracy and inability to let things go mean I often get into arguments over trivial matters. Like when over dinner one time my (ex) sister-in-law was talking about someone overly concerned with their appearance, and concluded with the statement, ‘People are so fickle.’

‘What do you mean by that?’ I asked.

‘You know,’ she said. ‘People are so shallow and superficial.’

‘Oh, I totally agree,’ I replied. ‘But that’s not what fickle means.’

‘Yes, it is.’

‘No, it’s not. Fickle means changeable, inconstant, not shallow.’

‘I’m an English teacher.’

‘And I have a dictionary. Shall we look it up?’

‘Well, whatever it means, most normal people would have known what I meant.’

‘Then most normal people are using the word fickle incorrectly too.’

Sure, it’s a little thing and in hindsight it comes across as kind of petty, but that’s the sort of argument I can’t resist having – those to do with facts, where I will back myself to the hilt because I know I’m right.

On the other hand, when it comes to disagreements about less concrete things – emotional things – that’s what I struggle to cope with. I approach life in a rational fashion and expect other people to respond in a rational way, but that’s not what tends to happen. Instead, people are complex and confusing and behave in ways that aren’t rational at all. I just don’t understand it. You try to discuss something in a calm and controlled manner and they flip out, fly off the handle, scream and shout, and in a split second I’ve backed down, lost the argument and dropped into survival mode. Otherwise, if I try to stand up for myself, I get eaten alive.

I link this to my autism, especially since I know many others who experience the same anxiety over arguments. Perhaps having poor Theory of Mind skills – the ability to understand another’s thoughts, feelings, and point of view – means we are incapable of successful conflict-resolution. Or perhaps my aversion to confrontation is something more particular to me.

As a child, I grew up in a household in which confrontation had very real consequences, then at 19 I moved in with my girlfriend’s family, where a violent brother and emotionally unstable mother meant that any confrontation led to holes being kicked in doors and phones smashed against the wall. At 21 I formed a band with a girl who ruled my life for the next three years because I was terrified of her spectacular outbursts and felt powerless to escape her anger, while at 28 I moved into a ‘supported living’ house, where my housemate would break milk bottles on the kitchen floor if I disagreed with him. Over the years, I’ve learnt that confrontation means danger; backing down is the best way of surviving.

But it isn’t, because it’s incredibly damaging to your self-esteem and your long-term happiness. Living like this makes it very easy to be taken advantage of – unless you isolate yourself as a hermit, which, to be honest, is a very attractive option sometimes. I get churned up inside just thinking about the potential for arguments. I walk on eggshells, terrified of upsetting people because of how they’ll react, and I know what that makes me.

There’s that common expression about the world being divided between ‘givers’ and ‘takers’. This assumes that givers and takers are in some form of symbiotic relationship that fulfils one another’s psychological needs. I think the truth is much darker than that.

To paraphrase the 1960 movie The Apartment, there are ‘takers’ and ‘the took’. The worst thing about being the took is that you know you’re being taken, but there’s not a damn thing you can do about it. Because takers don’t take what is freely given – they take whatever they want. It’s a form of abuse, one that people with Asperger’s are very susceptible to because of our difficulties handling confrontation.

So when I know I need to confront someone about something – when I’m being taken advantage of, for example – I obsessively plan out what I’m going to say. And then how they’ll respond. And what I’ll say next. And so on, and so forth.

Of course, in real life, people don’t respond how you want them to, so I try various permutations – if the person responds rationally, irrationally, emotionally, angrily, defensively, offensively, how I’ll react, how I’ll respond. I have the same argument sixty or seventy different ways, every single day, all in my head.

And then the moment comes, and all the preparation goes out of the window. You’re aggressive instead of assertive, you stumble over your words, the other person explodes and you cower, or worse they deny anything’s going on and it’s all in your mind, which confuses you, until at the end of the argument you’re in a worse position than when you started, and all the things you’d meant to say, and all the rights you were going to insist upon, lie unspoken in your heart.

And you realise that there’s really no reasoning with some people, so it’s best to leave those arguments where they belong – spinning around in your head all day, every day, because they’re the taker and you’re the took.

And there’s not a damn thing you can do about it.

An Aspie Family Christmas

As a person with Asperger’s Syndrome, and a wife with the same, I have just experienced an incredibly stressful holiday season that has left my nerves in shreds and my marriage hanging on a knife-edge. For the avoidance of future issues, and to help out my fellow Aspies and their families, I thought I’d share what happened to me and offer some friendly advice on how to make things run more smoothly.

1. Keep the disruption short

My wife asked if we could spend a few days over Christmas with her sister and family, a four-hour drive away from home. As a supportive husband and father, of course I said yes. Two or three days at somebody else’s house is about my limit.

It wasn’t until two weeks before Christmas that I discovered my wife had actually arranged six days with her sister. I protested and tried to change it, only to be told by the wider family that it had already been arranged and changing it would be inconvenient. For them. The neurotypical ones.

Not wanting to cause a fuss, I loaded the car with everything including the kitchen sink (a toy for my daughter), and we set off.

In short, it was two rather pleasant days, two rather annoying days, and two days in which I wanted to push people off the quayside and throw stones at them as they struggled to stay afloat.

People with autism need space to recharge our batteries. I’m not talking simply physical space – we need mental space, a way to escape the slowly building pressures and strains of being forced into relentless and unpredictable social situations. Such a thing is generally impossible in an unfamiliar environment filled with somebody else’s stuff and driven by rules and routines different from your own.

Without this release, as time goes on you become more tired, more stressed, more prickly, more antisocial, less able to cope. And then you look and act like an asshole as you start to isolate yourself, avoid eye-contact, mumble two-word responses to questions, and refuse to participate, all as a way of surviving. And are told this isn’t the way you’re supposed to be behaving over Christmas. By neurotypical people. Whom you already warned that you’d get like this if you had to spend six days with them, but who chose to ignore it anyway.

So to the families of Aspies – think carefully about the duration of the holiday arrangements, and when your loved one is showing signs of stress, leave them alone. You might think that trying to include them in activities will bring them out of their funk, but in reality it’ll likely make things worse as they’ll feel pressurised and even more trapped than they already do.

2. Keep the numbers small

I had been informed that there would be a total of eight people at Christmas, including myself, my wife and my two kids, perhaps because it was known that I’d become anxious or refuse to go if this number was any higher. So imagine my surprise when a further seven people turned up, to take up every spare room in the house and leave me to feed the baby on a hard wooden chair at the dining room table every night.

I’ve mentioned many times before that autism is an exhausting disorder. When I’m with other people I spend inordinate amounts of mental energy consciously processing those things that most neurotypical people take for granted, namely how to have a conversation, when it’s my turn to speak, what I should talk about, how I should phrase things, where I should look, how much eye-contact I should make, how to interpret what they’re saying, reading their body language, regulating my posture and my proximity, working out relationships, the appropriate register, making sure I’m not talking too loudly or too soft, dominating the conversation or saying something inappropriate. I do all this to ‘pass’ for normal in a process called masking, and it is incredibly stressful, overwhelming and draining, and causes massive anxiety.

That’s with just one other person. Put me in a house with fourteen other people and I’m on overload. I can’t mentally process so many inputs and interactions, and something has to give – normally my peace of mind and my ability to function. I tend to come across at these times as arrogant and antisocial as I struggle to regulate what I say or how I should say it. My coping mechanism is to withdraw from the social encounter, deal with people one-to-one, minimise the number of simultaneous interactions – something that’s impossible in a crowd.

So if you want your Aspie family member to have a good time during holidays, less really is more.

3. If you make a plan, stick to it

It is well known – so well known, in fact, that it’s hardly worth mentioning – that people with autism hate change. I have discussed this many times and pointed out that it’s slightly more nuanced than that. My wife, for example, cannot handle change that involves the cancellation of something already arranged. I am the opposite – cancelling things doesn’t really bother me, but adding things in with little or no warning makes me freak out. The looseness of Christmas exposed my wife and I to both of these types of change, leading to great emotional distress for both of us.

Our second day was a case in point. It had long been arranged that everyone would go for a walk at the beach in the morning and in the afternoon someone would kindly look after our kids so my wife and I could head off to a coastal village to have a look around and spend some adult time together.

We left the house at 11.45 and arrived at the beach for 12.30, which by my reckoning, as a stickler for accuracy, is not morning. A minor point, perhaps, but incredibly frustrating for a person with autism. An hour’s walk in the wind and rain at the beach and I was more than ready to go back to the house, head off to the pretty village, and spend some quality time with my wife.

Unfortunately, somebody suddenly announced, ‘We’ve decided we’re all going to the pub for a drink.’ And that was that.

My wife was okay with this, as an additional activity is fine for her. I, on the other hand, panicked. Telling me I have to go into a stressful social situation – a dark, noisy, crowded pub at Christmas with people I don’t know very well – with barely a couple of minutes to get my head around it caused me massive unnecessary anxiety. For other people, going into a pub is probably a pleasant experience – for me, it is a torture that must be endured, and I need to mentally prepare myself for that. Unable to do so, I found it horrendous.

Unfortunately, staying at the pub over an hour, walking back to the car, driving back to the house, meant it was nearly dark by the time we got there. Then the person who said they would look after our kids had to prepare the food for dinner, thus we were unable to go to the coastal village. While I found this annoying because I’d been looking forward to it, my wife found this change of plan – the cancellation of something already arranged for no good reason – very upsetting and difficult to process.

Most of the people I know with Asperger’s suffer problems with anxiety, and changing plans tends to send our anxieties skyrocketing. Indeed, it can ruin our whole day as dealing with the psychological and emotional fallout lasts for hours. So if you must add or remove something from the schedule, make sure it’s for a good reason and not simply because of a sudden whim. A little sensitivity goes a long way to sparing your Aspie relatives a great deal of unnecessary anguish.

4. Don’t expect others to conform to your emotional standards

I lost count of the number of times I was told to cheer up, be happy, enjoy myself, join in, stop being a bah humbug, as though my emotional reactions were somehow ‘wrong’ because they differed from those of the people around me. Not only, therefore, was I expected to behave in a neurotypical manner and suppress my natural tendency towards a quiet, ordered life, I was also denied the right to feel my own perfectly normal emotions.

I was even told that, as my kids made it ‘magical’, I should feel magical. I asked precisely when an adjective had become an emotion and if such a feeling could be described to me, and therein lies the rub – people with autism often struggle to understand or appreciate their emotions. I certainly approach them from an intellectual viewpoint, and I find the concept of happiness, as it relates to me, very confusing.

To me, happiness isn’t about feeling good, it’s about not feeling bad. If I am ‘enjoying myself’ it means I feel absolutely nothing – the everpresent irritation, the tightness between my shoulder blades, that electrical storm of focused energy that buzzes around inside my head as I process, process, process, are not there. It doesn’t mean I’m smiling or jumping up and down. If I’m reading in a corner I’m quite possibly quietly content.

But like most people with Asperger’s, I won’t lie, and perhaps that’s why I stand out. I found Christmas extremely difficult, and when people asked how I was feeling, I told the truth. While everyone else was supposedly having ‘such a good time’, I spotted tears when they thought nobody was looking, heard whispered arguments from behind closed doors, noticed when formerly talkative people fell strangely silent and when couples sat beside one another without a single word passing between them beyond mildly passive-aggressive statements. So maybe I’m not so different after all.

I played with my kids and made sure they were happy, and I’m not sure why everyone was so bothered that I should display outward signs of pleasure for their own gratification. It seems to me less about making sure I’m enjoying myself and more about feeling threatened that somebody isn’t buying into the same sentimental bullshit that they are.

So don’t heap added pressure on your Aspie relatives by expecting them to feel a certain way – we’re already expected to behave in ways that don’t come naturally. Allow us our own emotions and to react exactly how we react, and we’ll do the same with you.

5. Turn off the gosh-darned music

As soon as the household arose, the radio went on. As it was rigged up throughout the house, the music would play in the kitchen, the dining room and the lounge, at quite a loud level, right up until bedtime. This was despite people coming and going, having conversations, playing games, making phone calls, watching videos on their handheld devices, and everything else that goes on in a house at Christmas.

My God, it was overwhelming. It was like a thousand tiny drills boring into your brain morning, noon and night. When you’ve heard Shane MacGowan slur his way through Fairytale of New York six times by lunch, you’re ready to agree with that line ‘Happy Christmas your arse, I pray God it’s our last.’

People with autism tend to have oddly-balanced sensory systems. Normally, we have very sensitive hearing and struggle to filter out one sound from another. Stick me in a house with fourteen other people over Christmas and I can hear three or four simultaneous conversations, making it very difficult to pay attention to my book and thus get the mental space that I need. Add music to the mix and my sensory system is utterly overwhelmed, especially when that music is loud.

So spare a thought for your autistic relatives over Christmas – a quiet space or some quiet time is certainly in keeping with the Christmas spirit of peace and goodwill to all men.

6. Don’t lecture from a position of ignorance

While walking towards the aforementioned (awful, awful) pub, I explained my reservations to a member of my wife’s family. ‘For me,’ I said, ‘going to a pub is the equivalent of sitting a really difficult exam. I discussed this last month with Luke Jackson, an autistic author, and we agreed that while for most neurotypical people going to the pub is relaxing, for those of us with autism it’s jolly hard work. You see, you go to work, get stressed, and then go to the pub to unwind. But while you’re unwinding, we’re becoming more and more wound up. Afterwards, you go home and go to bed because you’re relaxed. We go home more stressed than when we left, and then have to spend a few hours unwinding and de-stressing before we can be relaxed enough to go to bed, which is awfully tiring and has a knock-on effect for the following days. That’s what it is to have autism and why I’d rather we didn’t go to this pub.’

Quite clear, I thought, frank, easy to understand. So how did he respond (other than, ‘Cheer up, you miserable bugger.’)?

He said, ‘Oh, how ridiculous. No, I don’t believe that at all.’

‘Well, that’s the way it is.’

‘No, of course it’s not.’

And that’s the level of understanding I tend to get from my wife’s family. This is just one of multiple examples over the six days of me explaining to someone how my autism affects me, only to have them disagree with it. What? Why on earth would you belittle and undermine my understanding of my own condition and my own behaviour!?!

With all humility aside, I am an expert on Asperger’s Syndrome and how it affects me. I’m sought out to give speeches educating people about autism and I’ve written a well-received book about it, for Christ’s sake, one that’s sitting in the health section of every Waterstones in the UK. So why on earth would you dismiss what I say because you think you know best about a subject you have never studied, experienced or lived with?

Probably because there were some subsequent discussions about how ‘Asperger’s didn’t exist in my day,’ and how there are far too many people walking around using modern diagnoses as an excuse to cop out of life. Because that’s not condescending at all!

So if you want to keep cordial relations with your Aspie relatives, be sure to treat their expertise with the understanding and appreciation it deserves. Unless you’re a bigot, in which case we probably don’t want anything to do with you.

7. Bringing up the supposed links between MMR and autism isn’t going to win you any friends


I always find it strange that people dare bring this up. Without knowing very much about it, surely they know it’s a controversial conspiracy theory and therefore inappropriate to raise with people they don’t know from Adam. I don’t go up to somebody with cancer and say, ‘Hey, have you heard they have a cure for cancer, but they keep it hidden because they can make more money treating the disease than curing it?’ because that would be remarkably insensitive.

I have explained at length that MMR does not cause autism, and am armed with enough facts to shoot down any and all attempts to suggest otherwise. Unfortunately, this doesn’t stop people like my mother-in-law and various people in the house over Christmas telling me that my wife’s autism was caused by the MMR jab.

‘Andrew Wakefield was paid a hefty sum of money to find a link between MMR and autism so people could make compensation claims,’ I told them. ‘He was also marketing his own competing vaccine. This is what we call a conflict of interest and why his study has been completely discredited.’

‘He’s very popular in America.’

‘He had to go to America because he was struck off by the GMC for faking his research.’

‘Well, I still think he’s right.’

‘No, he’s not. The only study suggesting a link between MMR and autism had a sample size of twelve and was faked, whereas meta-analyses of studies featuring over 14.7 million kids – yes, 14.7 million – showed no statistically significant difference in rates of autism between those who’d had the vaccine and those who hadn’t.’

‘Well, I think that if you’re genetically predisposed towards autism, the shock of having three vaccines at once can trigger it.’

‘But where’s the evidence for that? If that was true, proportionately more people who’d had MMR would have autism than those who didn’t have the vaccine, and that’s not the case.’

‘She was different after she had the MMR. I know she was.’

And so I had to bite my tongue, or else I’d say something suitably cutting. Emotion trumps logic every time, and that’s damned annoying.

So don’t bring up this crap with your Aspie relatives during an already stressful time and then argue against facts with feelings. As I said, autism is my area of expertise, and trying to make out that you know more than me about it just makes you look ignorant.

8. And lastly, compromise is not a dirty word.

Nor are compassion, empathy or understanding. It seems odd that those of us with autism, who have clearly defined and specific needs, are the ones expected to fit in with everyone else. Yes, the ones who, because of their condition, have the least capacity to modify their behaviour to suit others are the ones who have to make the effort to adapt their behaviour to suit others. It doesn’t really strike one as fair, does it?

I’m not saying that the neurotypical side should make all the movement, but surely we could meet somewhere in the middle? It might make Christmas a little more enjoyable for all of us.

Speaking at an Autism Conference

As part of my role as a guest blogger for Autism Wessex, the charity that provides my support, I have written a blog about speaking at the Inservice Autisme in Belgium last month alongside internationally renowned opera singer Sophia Grech and bestselling author Luke Jackson (Freaks, Geeks and Asperger’s Syndrome).

It describes what people on the spectrum can achieve if we don’t let our limitations define us, and what a positive experience it was.

If you’d like to check it out, please follow this link: Gillan Drew Wessex Blog.

Thanks for reading!

How my toddler made me cry

My two-year-old daughter made me cry the other night.

It came as a bit of a surprise, because I’m not really that emotional a person. Over the years I’ve built up a thick skin – it’s the only way to survive being a square peg in a world of round holes. My moods tend to vary between melancholy, discontentment and ennui, so I rarely reach the extremes of feeling that lead to tears, good or bad. Funerals? Nothing. Weddings? Nothing. The birth of my kids? Meh.

But then, there is a chink in my armour. Toy Story 3 made me weep in the cinema, My Girl just kills me, and who doesn’t cry at Marley & Me (besides cat lovers)? I can’t walk past a child’s gravestone without welling up, and last year I even cried at a book, Karen Joy Fowler’s We Are All Completely Beside Ourselves, in a scene where a chimpanzee begs to be allowed to go home. All of which goes to show, give me the bittersweet juxtaposition of innocence and sorrow, and you can pierce right to the heart of me.

I first noticed this weakness about twenty years ago, at Land’s End in Cornwall. A little boy was running with his brand new toy sword from the gift shop when he tripped and fell and – SNAP! – the blade broke at the hilt. The look on that boy’s face – the dawning realisation of what had happened, the switch from innocent joy to infinite sorrow as life’s hard truths hit home, and then the tears of impotent despair at the discovery that some things once broken cannot be fixed – it broke my heart.

I mean, sure, it was just a plastic sword costing a couple of quid and his parents could have bought him another one in a heartbeat – hardly a life-or-death experience. But that boy’s face haunted me for weeks after, because in the innocent, uncontrolled emotional state of a child, unable to weigh up comparative value or process cause, effect and consequence, and living solely in the moment, it is life-or-death. Children and animals, their simplicity of thought and emotion, their purity – when they suffer, when they’re sad, when they’re in pain and when they die, it cuts through every barrier I put up to protect myself.

Unfortunately, my toddler is right at that point in her social and emotional development where innocence and sorrow come into contact several times a day.

The evening she made me cry, I picked her up from nursery as usual. It’s always nigh identical to that scene in The Railway Children – she sees me, stops stock still in awe, and then she shouts, ‘Daddy, it’s my daddy!’ and runs towards me, her face filled with elation, leaving me just enough time to drop to one knee before she slams into me and throws her arms around me. So excited to show me what she’s been doing, so proud to show me off to the ladies at nursery – ‘My daddy,’ she says, ‘This my daddy.’

She’s the last to be picked up, after dark, so for half an hour she gets to hang with the grown-ups. I know it makes her feel special. She gets such a look of well-being on her little face as she puts on her school bag like a big girl, waves to the ladies all cocky because she’s heading home to mummy and her little sister. This night was no different but for one thing.

She tripped as she stepped over the threshold, stumbled down the wheelchair ramp and face-planted into the mud.

I stood her up, her hands, coat and face black with dirt. The women from the nursery appeared in the doorway and in the light spilling out past them I saw my little girl’s face – the shock giving way to embarrassment and humiliation as she fought back the tears, struggling to keep control. I told her it’s okay and she’s very brave, but it was all too much and suddenly she was wailing and burying her face in my side so nobody could see her. Ultimate joy to ultimate misery in under ten seconds, her special, sacred moment destroyed. Broke my heart.

But that wasn’t what made me cry.

On the way home, to distract her from her misery, I asked her who had been there today. Turns out it was Tilly, Hugo, Sebastian, Rufus (yes, I know – we’re only a Tarquin away from winning Pretentious-name Bingo), and a new one for me – Jasper.

‘Who’s Jasper?’ I asked.

‘My best friend,’ she replied. Too cute!

Then I asked her what she’d been up to. ‘Me sing Twinkle, Twinkle with my friends.’ Oh my gosh, the sweetest thing ever. But it still didn’t make me cry. No, that came after dinner when I was bathing her.

She was sticking the foam letters to the side of the tub – ‘This mummy,’ she’d say, and ‘This Granny,’ and ‘This Poppa.’ Then she put three together, pointed at the middle one, and said, ‘This daddy.’

‘Who’s this, then?’ I asked, pointing at the figure beside me.

‘This daddy’s friend,’ she replied, and pointed to the other; ‘and this daddy’s friend.’ And then she put another one beside them and said, ‘And this daddy’s best friend.’

And that’s when I cried.

As a master at acting ‘normal’, I hid it well. This is particularly important because my toddler has become very sensitive to other people’s feelings. She’s always asking if mummy’s sad, or if daddy’s sad, and the other night she woke up sobbing because she’d had a dream in which mummy was very sad. So I wiped my eyes, endured that prickly feeling at the top of my nose, and got on with it.

But why did I cry? The juxtaposition of innocence and sorrow.

As somebody with autism, friendship is something I always desperately wanted but was never able to have. I struggle to understand or connect with other people. When someone wants to be my friend, I become paranoid and push them away. When I want someone to be my friend, I approach it so cautiously I miss the opportunity. I don’t know how to make, keep and manage friendships, and I only have the mental energy or focus to sustain one friend or partner at a time. As I’m married, this means I don’t have the social resources to have any friends – no close ones anyway. It’s the way I’m built. It’s one of those things.

But that doesn’t make it any less painful, and it doesn’t mean I’m not desperately lonely.

My daughter has already realised the importance of friendship. Watching her making friends is a wonderful relief, because she is not like me. A bittersweet relief, as one day she’ll learn that daddy doesn’t have any friends, and she won’t understand why, and she’ll be sad, because even though I won’t show it, she’ll know that I’m sad too. Because friendship is important regardless of who you are.

Where do innocence and sorrow factor into this? Her innocence; my sorrow.

That’s how my toddler made me cry.

Speaking for Others with Autism

As someone who puts himself in the public eye for a cause, especially on the internet, I’m aware that this makes me a target for criticism. Mostly it’s to do with my opinion on MMR not causing autism (because it doesn’t), my belief that modern, science-based medicine is better than snake oil and superstition (because it is better), and my insistence that people with autism can and do make good parents (because we can and do – although not all of us). These criticisms I can easily brush aside.

Not all criticisms can or should be dismissed out of hand, however. There’s a pernicious idea among the younger generations (and Taylor Swift) that any criticism is trolling, and those who do it are simply ‘haters’ and bullies, which is a great way of avoiding personal responsibility and adopting the mantle of victimhood, but isn’t an enlightened way of viewing people whose opinions differ from your own. So I tend to give my critics the benefit of the doubt – that the criticism was sincerely meant, even though I might disagree with it – and I consider whether there is any merit to it, since this is how we grow as people.

My latest criticism has got me thinking, for despite being worded rather rudely and making some outlandish assumptions, it asks a pertinent question: by what right do I presume to speak for others on the autism spectrum?

I have to first point out that, while I have been told I am an ‘ambassador’ for the autism community, speaking for those who can’t speak for themselves, I have never actually claimed this myself. I recognise, however, that by putting myself out there as a speaker, author and blogger, my words and behaviours reflect upon people’s perceptions of autism, and this is not something that I take lightly. Indeed, I put a great deal of effort into getting it right, especially since I’m currently in a position to influence opinion.

On Wednesday, for example, at an autism conference in Belgium, I spoke to two-hundred delegates about what it’s like to live with autism and how I manage to cope. Also on the bill at Inservice Autisme 2017, in the small village of Oostmalle outside Antwerp, were two other Brits with autism: internationally-renowned opera singer Sophia Grech, and bestselling author of Freaks, Geeks and Asperger’s Syndrome Luke Jackson. So, what right do I have to speak at such an event?

My answer is: I have every right. I talk about what affects me and other people I have met with autism, what has helped me to cope and what has helped others. I point out some of the issues you might face living on the autism spectrum and how these might be overcome. As you don’t cease to be an individual when you’re diagnosed, I am up front about the fact that the things I say will apply to some people more than others, and while some coping strategies might work, they are certainly not for everyone. The important thing is to make sense of your own experience and find out what works for you.

I don’t think there’s anything particularly offensive about that.

I have also been told I shouldn’t speak for others with autism because I have a wife and children, a book and a blog, and I have worked in the past – that my achievement of various life goals makes me ‘atypical’ (i.e. too successful) and thus invalidates my experiences of autism. Inherent in this accusation is a very negative view of people on the autism spectrum, as though to qualify as autistic you must necessarily be unfulfilled, downtrodden and miserable, and this is an opinion that simply does not ring true for me.

I have met hundreds of people on the autism spectrum, and I continue to be amazed by their diversity. In just four months of public speaking I’ve spoken to many Aspies with wives and children, jobs and homes. After every speech I have given, people on the spectrum have come up to me and told me I could have been describing their lives and that what I said really resonated with them. To say that I am ‘atypical’ and cannot relate to others on the spectrum is therefore simply wrong.

It has also been assumed that, because I take a positive, hopeful view of the prospects for those of us on the spectrum, I shouldn’t speak for those who don’t have it as ‘easy’ as me, or the same ‘advantages’, as though I lead a blessed like free of strife and woe. I don’t think anything could be further from the truth. I could offer to show all my self-harming scars from years of struggle, but instead I’ll say what it took to attend the autism conference to show how ‘easy’ it was.

As a stay-at-home dad/unemployed guy with a two-year-old, a seven-week-old and an autistic wife who can’t be left alone with the kids for more than a couple of hours, attending the conference was tough. First, my wife was very abusive when she first found out about it in April because she was scared of me going away and her not being able to cope; despite organising for people to sit with her while I was away, and for her to stay at her mum’s, she remained hostile about it right up until the time I left, telling me I would likely be killed by terrorists in Belgium and that I didn’t love my family, etc., etc. This is what she does when she is feeling vulnerable – she goes on the attack.

As I tried and failed to book a flight to Belgium (I found it too difficult, for while I am capable of some things, I’m incapable of many others), I sought help from my dad, who agreed to drive me. He wanted to take the Channel Tunnel, but as I’ve been on it before and found it claustrophobic, I asked for us to take the ferry because I was worried I might have a panic attack.

On the day of the journey I was up at 3am with the baby and didn’t return to sleep. I left home at seven and it took more than twelve hours of travel to reach Oostmalle. Upon arrival, I was terrified, had an upset stomach, and struggled to keep my anxieties in check.

Entering the conference centre, I was confronted by 200 Dutch people eating dinner, drinking in the bar, and milling about in a noisy, dark environment. The organisers sought me out and directed me to the ‘English Corner’ where Sophia Grech sat with Luke Jackson, two titans of the autism community. So I dug deep, swallowed down my fears, and introduced myself.

After an hour of trying to hear people over the noise and hiding behind a bottle of Coke, my father drove me to the hotel. I rang home to check on things, to find my wife sobbing, the baby screaming, and my toddler crying down the phone, ‘Mummy very sad! Mummy very sad!’ Not easy.

After my dad went to sleep, I worked on my speech, as this was the first opportunity I’d had to be in a clear headspace – or as clear as it could be.

In the morning, I was really panicking. I had to take pills for my upset stomach, struggled to breathe, and wasn’t sure if I’d be able to keep my heart inside my ribcage. As we arrived I puffed out my cheeks, blew out my breath, and flapped my hands like a baby bird trying to take flight. And then I forced it all inwards and painted on my mask, my happy, confident face, and entered the fray.

The speech went well, very well, in fact. I really felt as though I made a difference, and the feedback afterwards showed that it went down a treat. For the next few hours I hung around with Luke and Sophia, and despite my fears, they were two of the coolest, nicest, most down-to-earth people you could hope to meet, with stories and experiences and ideas very similar to my own. In fact, to find myself in such agreement with others was both a rarity and a validation of my own views on autism.

The next day, exhausted and headachy and socially hungover, dwelling on every word I’d said in my speech and worrying if I’d done justice to the wider world of autism, I got up at six to leave at seven for the twelve hour journey home, whereupon I immediately resumed my parenting and caring roles.

I mention this to show that while things might be hard, those of us with autism can achieve amazing things if we have the courage and drive to confront our problems and refuse to let them hold us back. And if people still think I don’t understand what it is to struggle, that I don’t find things difficult enough to be a ‘proper’ Aspie, and that my life is too easy to be relatable, then it says more about them, I think, than it does me.

So why do I do it, if I find it so hard? I do it because I can do it, and I genuinely want to help. My life has been so hard I want to make things easier for others, and if sharing my experiences, opinions and coping strategies can make an autistic person’s life just a little bit easier, that’s what I’m going to do, regardless of whether critics think I’m entitled to or not.

I’ll leave you with the comments of a girl in my village who also has autism. She has struggled all her life but is now doing voluntary work and trying to make something of herself. She’s quite open about the fact that she isn’t articulate enough to describe what it’s like living on the spectrum and doesn’t have the confidence to speak in front of people anyway. Here is what she wrote on my Facebook page a few weeks ago:

‘You’re amazing and you’re doing a great job for everyone else who has autism like you and me and everyone else. I’m really proud of you.’

And the other day she wrote:

‘I and everyone else with autism is going to look up to you. You change people’s lives. Congratulations.’

Am I entitled to speak for others on the autism spectrum? I’ll leave you to decide.


The Hidden Disability and the Hands-On Dad

I’m a pretty placid guy, I think. I take as I find, try to treat others as I’d like to be treated myself, and generally endure massive amounts of abuse before I fight back. I can be irritable, sure, and I can be a dick, but I try to make the world a better place by being in it.

All that being said, there’s one thing that drives me freaking insane: when people assume I’m somehow less of a parent because I’m a man.

Yesterday, I arrived home from nursery at around 6pm with my little girl in tow and unloaded her from the back of the car. A neighbour was out in the street and asked me how I was.

‘Knackered,’ I replied.

‘Well, if you’re knackered, imagine how your wife feels,’ she replied. ‘It’s harder for her – she’s the mother.’

Wow. Considering we’ve only ever exchanged a couple of words before, it seems awfully forward to express such derision for my physical and mental state.

Allow me to respond.

‘Well, actually, my wife has autism and a learning disability and I’m practically her carer; I can’t leave her alone with the kids more than an hour or she becomes overwhelmed; she goes to bed at 9pm and sleeps right through till morning, so until 8am, I am a single parent; and every time the baby cries, she passes her to me.

‘For every five nappies I change, she changes one; I cook four nights a week while she cooks twice, unless she decides she’s not in the mood, in which case I have to throw something together or we go hungry; I look after the dog, the cat, the chickens, the fish; I do all the driving; and if I try to nap in the afternoon, I’m told I’m selfish and don’t care about the family.

‘When the baby cries, my wife cries; when my wife cries, the toddler cries; and then the toddler tells me I’m naughty for making mummy cry. So I soothe the baby, then soothe the toddler, which soothes my wife.

‘I’m the only one who baths our toddler; I put her to bed every night, even when she’s screaming to stay up because the baby’s still awake, which is every night; I take her to nursery twice a week and pick her up; I hold her hand when she wakes crying in the night; I cuddle her because since her sister arrived she needs three times the love and reassurance; I console her when mummy’s too busy playing with her phone to pay her any attention; and I’m the only one who disciplines her, gives her stability and clear boundaries, and remains consistent in my behaviour.

‘I haven’t had a good night’s sleep in two years, while my wife gets ten hours a night; haven’t had more than a few hours in a row ‘off’, while my wife goes out several times a week; bear the full responsibility for everybody in this household; and I am not allowed to get ill, or feel tired, or have a headache, or else everything falls apart.

‘If I go out, I have to arrange for someone to come in and sit with my wife; and everywhere I go, everybody asks me how my wife is coping, and how we can make things easier for her, and whether she needs more time away from the children.

‘My life revolves around my kids, as though I’m in a bubble of childcare; I don’t have the time, energy or inclination to do any of the things I used to do; I eat all the time and am so tired I barely know the day of the week; I feel as though I’m just going through the motions; and I read a pamphlet that said these are all signs of postnatal depression in women, but, damn it, this is just normal for me.

‘And now let me tell you why I’m knackered today. Between feeding and changing the baby last night, I worked on my speech till 1am. The baby was up at two, four and six this morning, an hour each time, and then my toddler once again got up at seven. I have had three hours of sleep in snatches of 45 minutes a time, and that’s the way it’s been for a month.

‘After breakfast I took my toddler to nursery, where she spent all day because I was out this afternoon and my wife wasn’t capable of looking after them both. After making lunch, I packed everything up for my wife and drove into Bournemouth. I then set up the pushchair, loaded the baby into it, and bid my wife adieu as I headed for a hotel.

‘Upon arrival, I was seated at a table beside best-selling author Kathy Lette and her son, Holby City actor Jules Robertson, and across from comedienne Rosie Jones. I was both overwhelmed and terrified, but I hid it well.

‘After a bit of chit-chat, I got up and gave a speech to 140 local business leaders, the mayors of Poole, Bournemouth and Christchurch, an MP and a Lord, encouraging them to provide work placements for people with special educational needs. After my speech, several people approached me and told me they had been sufficiently moved by my words to offer employment to people with autism.

‘Oh, did I forget to mention that I’m autistic too? And that I’m also susceptible to depression and have been on a high dose of antidepressants for fifteen years? And that nobody seems to give a damn about whether I’m coping?

‘So, my speech over, I picked up my wife, loaded the baby and pushchair into the car, and drove home. The baby apparently hadn’t woken up at all, but she was wet as my wife hadn’t changed her. I changed her clothes and nappy and fed her, then went to pick up my toddler from nursery.

‘On the way back, I thought how exhausted I was and how desperately I needed some rest, but I knew I still had to make tea, put my toddler to bed, and then, after my wife went to bed, get up up at least three times in the night to see to the baby.

‘And then I saw you, and you asked me how I was.

‘”Knackered,” I replied.

‘”Well, if you’re knackered, imagine how your wife feels,” you replied. “It’s harder for her – she’s the mother.”

‘Now, I’m not going to tell you how offensive your assumption is that my wife works harder at parenting than me. I’m not going to harp on about how while from the outside we might look like a nice, normal family, you have no freaking idea what goes on inside. And nor am I going to roll out that old adage that to assume makes an ASS out of U and ME. No.

‘To assume makes you an ass, period. And that’s all I have to say about that.’

That’s what I could have said. Instead, I dug deep, took it on the chin, and said, ‘Yep, it’s much harder on the mum.’

Because the situation in my household is the situation in my household. It’s not ideal, sure, but I’m surviving, and I’ll be damned if I’m going to allow my neighbours to know what’s really going on, and talk about it among themselves, and judge us.

They call high-functioning autism the ‘hidden disability’, and it really is – in every way that matters.