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I once spoke to the horror author Murial Gray, author of the criminally-overlooked masterpiece Furnace, about an unpublished writer accusing her of plagiarism.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).

Greta the Aspie

There’s a strange assumption I’ve come across of late that, by dint of my autism, I must necessarily be a fan of other people on the spectrum. This is particularly odd when the only point of similarity between us is our diagnosis. As a tattooed, shaven-headed, guitar-playing proponent of punk, rock, metal and grunge, is it really likely that I’m going to listen to Susan Boyle simply because she’s Aspergic? And as a fan of mostly horror and crime fiction, am I going to enjoy Chris Packham’s meandering nature memoir because he, too, is on the spectrum? (Short answer, no).

So, in a week during which 16-year-old autistic activist Greta Thurnberg dominated the headlines by not only arguing her case at the UN Climate Action Summit in New York, but also giving the Leader of the Free World the worst case of stink eye I’ve ever seen, everywhere I go it’s assumed I must be a fan. People keep asking my opinion of her, and of climate change, and whether we should be running for the hills screaming, ‘The sky is falling, the sky is falling!’ all because we both happen to have Asperger’s Syndrome.

On the one hand, it’s rather patronising to presume that, because we’re both autistic, I have specialist insight into a 16-year-old girl from Sweden who has made it her mission to beat everyone over the head with a virtue stick like a real life Lisa Simpson. On the other, it’s nice that people are talking to me, and since, as a result of my autism, I’m a keen observer of the human condition (even if my conclusions are sometimes way off base), it probably makes more sense to ask me than some random weirdo who sleeps on a park bench and smells of cheese.

So what do I think of Greta Thurnberg?

I have mixed feelings. I think she’s done an amazing job almost singlehandedly putting environmentalism at the centre of the political agenda and bringing the issue of climate change to the forefront of everyone’s minds, and there’s little doubt her autism has played a massive part in this – her obsession, stubbornness, and dogged refusal to be put off by any criticism or negative feedback have all served her well. She’s demonstrated in the best possible way that one person can change the world, if only they work hard and believe in themselves enough. And unlike some environmentalists (*cough* Prince Harry *cough*), she practices what she preaches, travelling by trains and yachts instead of cars and planes. Kudos.

However, the same autism that has enabled her to succeed has, I think, exposed her to legitimate criticism in terms of her message, and created genuine concern about the potential impact of being so notorious so young on both her short-term and long-term mental health.

Climate change is clearly her obsession, but as with many people on the spectrum, while we are fabulous at learning facts and figures, we often lack a genuine understanding of the topic – we’re great at studying the trees, but not so good at putting them together to see the forest. You know, big picture stuff. There is certainly a tinge of millenarian hysteria in her rhetoric, and while she has been emotionally restrained in the past, her speech on Monday was dramatic, scathing, emotional and scolding. It risked undermining the good that she’s done since nobody likes being lectured by a know-it-all teenager who thinks they can solve all the world’s problems because they’re better than you. I should know – as a teen I was insufferable, and, human nature being what it us, I never managed to convince anyone that my extensive knowledge of playground social interaction meant anything in the ‘real’ world. Strange.

Now, before you say I’m a climate change denier, I’m not. The science is unequivocal – the climate is changing. And anyone who ignores the impact of man on the environment and thinks it’s all a conspiracy to charge higher taxes simply doesn’t want to face the uncomfortable truth that we are a massive cause of this. That said, predicting the effects of anthropogenic global warming using computer models is on less sure-footing given our inability to accurately measure the influence of millions of different variables on complex weather patterns, ocean currents and ecosystems. I think much of the panic afflicting young people right now is from taking the ‘worst case scenario’ models. It’s ‘end of the world’ stuff, a doomsday cult with scientific backing, so it’s no wonder that schoolkids are crying themselves to sleep over our impending demise.

I’m not so pessimistic. I think we’re going to be seeing a turbulent few decades involving mass migration of people, increasingly frequent extreme weather events, and lots of highly-charged arguments about power sources and a diet containing less meat and more locally-sourced produce, but I don’t think humanity is going extinct. And the accusation that we’re doing nothing to combat climate change is just as selective a reading of the evidence as climate change denial. We’re not doing enough, certainly; we can definitely go further; but the very fact so many people are engaging with this issue shows that it is being taken seriously by large swathes of the population, including consumers, manufacturers, lobbyists and politicians (with the notable exception of Donald Trump).

Likewise, I fundamentally disagree with many climate change zealots who seem to think we can save the world by going backwards, banning cars and air travel and returning to a pre-industrial-type lifestyle. That genie is out of the lamp, and it’s not getting put back in. Through the natural earthly cycle, climate change is going to happen whether or not we change, so preparing for it is far better than trying to hold back the tide. We need more technology, not less. Look at how digital streaming services have massively reduced the manufacture of CDs and DVDs. Look at how 3D printers prevent the need for transporting goods from the other side of the world. Look at the new Sabre oxygen-hydrogen hybrid engine, which promises far greener air travel. These are the things that are going to let us reach a carbon-neutral society, not a bunch of Luddites throwing their shoes into the machinery.

When it comes to effecting change, I think Greta Thurnberg is right in targeting the young and will reap the rewards of this stratagem, but not in the way that she thinks. Far too many pressure groups and protesters (like Extinction Rebellion and many of Thurnberg’s student activists) seem to prefer standing on the outside shouting at ‘the Establishment’, and I have no truck with that that way of thinking. If you want system change, you do it from within the system. You train hard and work hard, you become an expert, you get into a position where you have the power to change things – you don’t piss and moan on a street corner. I don’t think the student strikes will change the world, but I think ten years from now, when those same students move into government and academia and industry around the world, that’s when things will change – from the inside.

As far as Thurnberg’s mental health goes, I do worry what kind of support she’s receiving. This is a person with diagnoses of autism, OCD and selective mutism who, by her own admission, has battled depression and anorexia and who is right now at the very centre of world affairs and media scrutiny. Of course, I’m not saying that this in any way detracts from her message or that she should be denied the right to express it, but as someone who has experienced breakdowns and burnouts throughout his life, I wonder how long she can keep it up. My saying this probably comes across as patronising in itself, and if so, yeah, I am, but that doesn’t change that, from my experience of those of us on the spectrum, her mental health is a legitimate concern and she should not be mocked by the President of the United States simply for being herself.

So, in summary, I think Greta Thurnberg should be applauded, not only for highlighting the issue of climate change, battling her way into the corridors of power, and ensuring the next generation of lawmakers and decision-makers will be concerned about the environment, but for practising what she preaches, even if I’m not entirely on-board with the severity of her message, and I have more hope about the future than she seems to be.

The way I see it, while climate change makes the future a terrifying unknown, we’re humans – we’re creative, adaptable, resilient and determined, and I have no doubt we’ve got this. Of course, climate change fanatics, and Greta Thurnberg herself, might call this hubris, since humans can also be stupid, selfish, backward-looking and incredibly resistant to change. It all depends on your perception of humanity, and whether you believe we are collectively a good or an evil. I’m prepared to think we’re better than Thurnberg thinks.

I hope humanity doesn’t prove me wrong.

Fingers in the Sparkle Jar review

About eighteen months ago I was asked to review Chris Packham’s nature memoir, Fingers in the Sparkle Jar, by an autism charity with links to the man himself. Presumably they thought that, as an autistic writer who lives in the New Forest like Packham, I would give it a glowing review. But I didn’t. So they didn’t publish it.

In honour of World Book Day, here it is:

Chris Packham is a man who divides people. I have met those who adore him and his animal activism, and others who cannot abide him. It should come as no surprise, therefore, that Fingers in the Sparkle Jar, his idiosyncratic memoir of his childhood, is just as divisive.

The title is, without a doubt, the best possible description for his work. A jumbled collection of vividly-drawn vignettes and intimately-rendered impressions, some magical, some shocking, all peculiarly individual, it will surely disappoint those looking for a straightforward autobiography. To read this book is to delve into a mixture of memories and imaginings, poetry and pain, as though shaking up a jar of recollections and drifting through the resulting chaos. This is the book’s main strength, and one of its key weaknesses.

While there is an overall progression – it’s the story of a boy taking a kestrel chick from a nest and raising it, in the process learning about life and death – to try to impose a linear narrative to the text seems to be to miss the point. Indeed, it has an obsessive focus on the details rather than the ‘bigger picture’, clearly representing how Packham interprets the world and mirroring the workings of the autistic mind. As a reader, however, and an autistic one at that, I found this wandering style more alienating than inviting, especially the multiple shifts from first- to third-person, and craved something – anything – that might give me a sense of direction.

It is also a particularly difficult read, both in terms of form and content. From the first page, you are struck by Packham’s individualistic writing style – long sentences packed with adjectives and multiple clauses that create a wonderful sense of a place or a feeling but make literal understanding almost impossible. Some of his sentences I had to read a dozen times to even come close to getting the gist of what he was trying to say, and this added to my frustration with the book. Furthermore, the brutal, unsentimental honesty of his writing is at times deeply uncomfortable; the depictions of bullying and animal cruelty, for example, some of it by Packham himself – a passage where he describes his fondness for eating live tadpoles stands out – are markedly unpleasant and not for the squeamish.

All of which makes Fingers in the Sparkle Jar an incredibly difficult book to review. On the one hand, it is revealing and brave, beautifully illustrating the isolation, confusion, and bullying often experienced by those of us on the Spectrum while we were growing up; and on the other, I found it both a challenge and a chore to read. Having discussed it with others, some really liked the lyricism and free form of the structure, while others, like me, struggled to cope with the poeticism and formlessness of Packham’s style. I can understand why, as a dark, individualistic depiction of a childhood living with autism and nature, it has earned bestseller status, but if you’re expecting a straightforward autobiography about how a naturalist became a TV presenter and was subsequently diagnosed with Asperger’s Syndrome, this is definitely not the book for you.

Fingers In The Sparkle Jar at Amazon

My Life With Autism

For anybody in the Dorset area, I am doing a talk tomorrow night for DAAS (Dorset Adult Asperger’s Support) at the United Church in Dorchester (49/51 Charles Street, DT1 1EE).

The same talk was very well received in July at a similar event at Bournemouth University. Doors open at 6.45. It would be great to see some of you there.

Gillan

 

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!

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

 

Support for Parents With Autism

This is a long one, so brace yourselves.

There’s plenty of support for parents with autism. There’s also a total lack of support for parents with autism. Weirdly contradictory, I know, but read on and I’ll explain.

While Lizzie was pregnant with Izzie, we received plenty of support on account of our autism. They gave us a consultant at the hospital, sent us to a nutritionist, referred us to the ‘special’ community midwives and introduced us to our future health visitors. We also had an outreach worker from a local children’s charity who visited us every few weeks to make sure we didn’t need anything extra and were up to speed on the processes of labour, birth, and what comes next. Pretty nifty.

The ‘special’ midwives visited us every few weeks in the safety of our own home, and gave us extra time to explain things and iron out any problems. The team was so good that when Lizzie was sent home from hospital because they didn’t believe she was in labour, three community midwives turned up when the emergency shout went out, and two of them accompanied Lizzie in the ambulance.

We had meetings involving social workers, the local autism charity and representatives of the local council to offer their help and support, too. The unborn baby was assigned a social worker and our competence was assessed (and found to be fine). We were given a fake baby to look after for a few days and attended both NHS and NCT courses on pregnancy, childbirth and breastfeeding. The midwife team could support us for 28 days after birth; the health visitors could start from 11; and they’d see us every single day if they had to. Promises were made, support was offered, and our hands were going to be held right through the pregnancy and birth and into the future.

But it hasn’t worked out like that.

The main problem we had before the birth was getting Lizzie ready for her two nights in hospital. As a medically high-risk individual, she and the baby had to remain under observation for 48-hours. Trouble is, they wouldn’t allow anyone to stay with her overnight – visiting hours ended at 8pm and partners had to be gone by midnight, not to return before 10am – and as a highly anxious person with autism, a fear of hospitals and difficulties adjusting to new situations, Lizzie was terrified of being alone, particularly with a new baby.

Various people contacted the maternity unit on our behalf, and we were even given a tour of the birthing suite, postnatal ward, Special Care Unit, Neonatal Intensive Care Unit (NICU), and Transitional Care Unit (TCU) – all of which we unfortunately got to use – but they wouldn’t budge an inch: despite Lizzie not spending a night by herself for years, having six hours of support from the autism charity each week and a hell of a lot more from family, friends, and me, and struggling to communicate when stressed or with strangers, both of which she was going to be, they would not make any exceptions for anyone. The best we got was that the hospital would try to give her a side room on the postnatal ward, or a place in the eight-bed TCU, depending on space and circumstance. So she’d just have to grin and bear it.

As I have mentioned before, the labour and birth were a bit of an ordeal. Lizzie lost almost three litres of blood, the baby spent the first two days in an incubator on NICU and the next two in the special care unit, and then another three on TCU. I would like to say that the midwives and nurses and healthcare assistants were great, and they were, but one deep problem overshadowed that whole week: where was our special dispensation for being autistic?

‘Ah,’ I hear you say. ‘Why should you get extra attention for having autism? Never happened in my day. The midwives and nurses should have been able to support perfectly well.’

And yes, they should. But there are a couple of problems with that.

Staffing is the first issue. They don’t have the time to provide the extra support a person with autism needs. On the Postnatal Ward one night there was one midwife to cover 25 beds – so presuming one baby per child, that’s one person to care for fifty people. And Lizzie was in a side room. Did the midwife have the time to check on Lizzie, explain things to a greater depth, make sure Lizzie understood, and, more importantly, that she had understood Izzie? Of course she didn’t.

Things weren’t any better on TCU. You’d think that with eight beds supported by one midwife and one healthcare assistant, you’d be seen when there was a problem. But one night, it was ten o’clock, the staff had changed over at seven, we hadn’t seen anyone for four hours and my taxi (also named ‘Dad’) was due at eleven. We were worried about Izzie as she was jaundiced and not going to the toilet, and I was worried about Lizzie, who was freaking out, and I’d buzzed three times already, so I went to find someone. It turned out the two staff were feeding two sets of twins, and they told me to wait my turn. Hardly supportive of two desperate and terrified new parents, particularly if they both have autism.

Another issue is therefore understanding. I don’t know if they’ve had training in autism and Asperger’s – they should have done as a result of the Autism Act – but I had to explain to every one of them what it was and how it affected people. They all said the same thing – ‘Oh, if she needs anything, all she has to do is ring the buzzer.’ Even without a three hour wait, the simple fact is that Lizzie isn’t capable of asking for help. She shuts down when there’s a problem, goes into herself and stops communicating. And she pretends she understands things, or thinks she understands them, when she doesn’t. I watched midwives ask if she was okay and she smiled and they walked off when I knew there was actually something wrong. And I watched as people explained things to her and she nodded intelligently and then afterwards said to me, ‘What did any of that mean?’ This is why she needed someone who knew her to advocate for her, to talk to people on her behalf as the support workers and social workers had been doing. But they still wouldn’t let me stay.

Now, imagine you’re a twenty-nine year girl – perhaps not the easiest of things. Imagine you hate hospitals and have had to have counselling from various sources to face up to the fact that you have to spend two nights away from home. You’ll be away from your partner and your regular support network, and in addition, you’ll have the responsibility of a newborn baby that you have to look after alone, without your partner backing you up.

Now imagine that you have the baby, only it’s a terrifying nineteen hour ordeal involving ambulances, blood, screaming and pain, a spinal injection, episiotomy, failed ventouse and forceps delivery. Imagine you then haemorrhage and have to have two blood transfusions, while the baby is rushed off to Intensive Care in an incubator. Imagine that instead of the two days you’ve prepared for, you have no idea how long you’ll have to stay. Imagine that they put you in a side room and ignore you for eight hours at a time while you plod back and forth to NICU, where your baby is being fed through a tube in her nose.

Now imagine you get transferred to TCU after four days, and are handed your baby and expected to get on with it. They’re too busy to sit with you and show you how to breastfeed, so they give you advice and leave. Now that the baby’s not being fed through the nose, she’s desperately hungry, and won’t stop screaming and sucking on your breast even though there’s nothing in them.

Imagine she’s been feeding for five hours, and you’re weak, and sore, and tired, and you haven’t recovered from the blood loss, and you’re in a strange place with strange people and nobody is responding when you buzz. And then they tell your partner, the one who has been standing beside you all day, supporting you, giving you strength, that he has to leave and come back almost eleven hours later.

Now imagine that you have autism.

I think that warrants a little special dispensation.

People with autism don’t like change, and with a different midwife or nurse every few hours, and no consistency from one day to the next, hospitals aren’t designed to be easy for us. With the additional problems with communication, understanding and anxiety, people with Asperger’s Syndrome and other forms of autism really need someone to advocate for them in hospitals. Ideally, a family member or partner should be allowed to stay with them to act as go-between. Hell, I’d have slept in a chair – I even asked to – if it meant I could stay and support Lizzie. It would free up nurses and midwives, provide far better care for new mothers, and be less cruel on people who have just been through a traumatic experience.

But they don’t make exceptions for anyone, apparently.

Once we were eventually out of hospital, we had great support from the midwives and health visitors. Until, unfortunately, a few weeks ago it was decided that as our village sits on the border between Hampshire and Dorset, all the people formerly looked after by Dorset health visitors (like us) must be transferred over to Hampshire health visitors. So the Dorset health visitors have washed their hands of us, but Hampshire haven’t picked us up yet. After seeing the health visitor every week since the birth, we’ve not been seen now for a month. I spoke to Hampshire and they said they’d be happy to see us, two towns over, in a year. So I rang Dorset to say that doesn’t sound right and they told me to speak to Hampshire. Again, for people who don’t respond well to change, to have support and then take it away seems like calculated cruelty.

So all in all, there are great support services out there for expectant parents with autism, and some great support services for parents with autism, but don’t expect to get much support inside hospital, because it all ends at the door. Equally, the provision of services in the community is terribly inconsistent and seems to be dependent on postcode and not need. I guess it’s lucky we’re doing so well, and nowadays don’t really need that much support, but for people further down the autism spectrum, I dread to think what could happen.

The Autistic Elephant in the Room

When you look at your baby it’s impossible not to wonder about inheritance. My daughter has her mother’s eyes, ears, nose, lips, hair and fingers. The only thing she seems to have inherited from the Drew family’s genetic legacy is the bum chin that I don’t even have. And despite being less than a month old, she still has more hair than me.

Luckily, her behaviour is more equally shared between us: she slurps her milk like her daddy, spills it down herself like her mummy, and is as noisy and uncoordinated as the both of us. I imagine the incontinence must come from elsewhere.

When you have autism, and so does your partner, the question of what your children might inherit from you takes on additional weight. While Lizzie and I were trying for a baby we were often asked if we were worried our child might be autistic. Whilst there’s no convincing evidence that autism runs in families – around one in twenty people with autism have siblings on the spectrum – anecdotally, many of us with Asperger’s can see autistic traits in at least one of our parents. So what if we create an autistic child?

As an individual, autism infuses the whole of my being. It is who I am, and my ways of thinking and feeling are inseparable from my condition. The same is true of Lizzie. I love her in spite of her autism, and because of it. We would not have achieved the things we have, in the ways we have, if we did not have Asperger’s Syndrome.

So would I want Izzie to be autistic? That’s an impossible question to answer. If I say no, it does a disservice to all the people I know with autism who would not be who they are without it. If I say yes, I am setting her up for a lifelong struggle in addition to the regular trials and tribulations that come with being human. In truth, whether she has it or not, it doesn’t matter at all. Aspergic or neurotypical, she will be uniquely herself and I will love her just the same and be there to support her regardless.

And yet I keep watching her for signs. You can’t tell below six months, apparently, but I thought the other day, ‘She makes good eye contact, she can’t be autistic.’ We gave her a bath for the first time last week. She sat in silence until we wet her head when she absolutely screamed the house down; I cannot abide anybody touching my head. But she loved her second bath. It’s just too early to tell.

I think it’s only natural for parents to want to wrap their children in cotton wool. Knowing the life I have led, spending a quarter of a century bouncing from misdiagnosis to misdiagnosis, doped up to the eyeballs on various mood stabilising and antidepressant medications, and suffering several breakdowns to boot, my family didn’t want me to have children. There was too much risk the child would be autistic. How would I cope? What if Social Services took her away? What if, what if, what if?

Deep down, I probably don’t want Izzie to have autism: I know firsthand just how hard it can be. But as I said to my parents, by protecting me from the bad things in life they’re also protecting me from the good. If I didn’t have a child, my life would be easier, but emptier; avoiding the risk of things going wrong means you avoid every opportunity to better your situation. And I wouldn’t change having Izzie for the world.

I have to remember this going forward. As a parent, I’d rather Izzie had an easier life and thus didn’t have autism. But perhaps autism would open up opportunities for her that she’d never have without it. It is not for me to say who she ought to become. I just have to make sure that, whatever issues Izzie might face in her life, she knows that her dad is behind her all the way.

Bursting the Baby Bubble

Despite my best efforts to forestall it – ignoring my diary, avoiding the newspaper and keeping the calendar on last month – time is marching inexorably onwards. Izzie has been registered and is now a member of a wider community to which I must soon return, and although I’m still swimming against the current, I can’t delay the inevitable much longer.

For the past week I’ve lived a wonderfully wholesome routine. I rise around 7.30 and prepare a bottle, and while Lizzie feeds Izzie I feed the animals, make breakfast, and have my sacred first coffee of the day. Then I load up the car and take Izzie and Ozzie for a walk in the forest. When I return, I sort out a few things, have lunch, deal with visitors, have a nap, and then all of us go for a walk around the village, which is the closest thing to heaven I can imagine.

After dinner I prepare the night feeds, Lizzie has a bath and goes to bed, I work on this blog or watch something while cuddling the baby, and head upstairs around 22.30. It generally takes till midnight to settle Izzie, with a couple of nappy changes and feeds overnight lasting around an hour each. This is my routine, and I love it.

People with Asperger’s Syndrome live by routines and struggle to cope with change. This is to be expected, given our rigid thinking and the difficulties we have processing new information, but Temple Grandin has an alternate theory. A remarkable woman with autism who designs slaughter houses, she believes that those of us on the spectrum are like prey animals with an overactive nervous system no longer useful in modern life. If a cow hears a sudden noise, it could be natural but it could be a predator, so it reacts. If it sees something new, it could be nothing or it could be the cause of its death, so it avoids it. The cow is happiest doing its usual thing of chewing cud and pooping pats because that keeps it safe.

People with autism are those cows. When we encounter anything new, different, unexpected, it sets off a fight or flight response disproportionate to the reality. Our bodies are flooded with adrenalin, increasing our stress levels and making it even more difficult to think clearly and cope with the situation. Hence we structure our lives to keep the unknown to a minimum and avoid stressful encounters.

Unfortunately, people with AS are also highly susceptible to forming obsessions, and when these combine with our love of routines and aversion to change, we can lose ourselves in a ‘perfect storm’ of self-imposed dissociative isolation.

I am in a baby bubble and I don’t want to come out.

Ten years ago I was part of a crew of fifty that sailed a tall ship across the Atlantic from the Canary Islands to the Caribbean. Those four weeks were some of the best of my life. Not because I was popular – I was unanimously voted the person most likely to be thrown overboard and they even printed me out a certificate that said as much – but because time was divided into a rigid, unchanging rotation of the watch system and the whole world existed in a space less than two-hundred feet long and thirty feet wide. I knew where I was meant to be, what I was meant to do, and who I was meant to do it with. I ate, worked, slept, in a fixed, tireless routine. And it suited me just fine.

As we neared our goal, after eighteen days with nothing between us and the horizon but whales, dolphins, flying fish and the occasional distant tanker, the rest of the crew looked forward to seeing land again. But I was so happy in my perfect bubble i wished there was no such thing as land and we could keep sailing forever. That first sight of Barbados, an ugly smudge between sea and sky, broke my heart.

The past three weeks my life has revolved around being the best dad and partner I can be. Even as I write this, Izzie is asleep in my arms with her mouth wide open, ‘catching flies’. The outside world has ceased to exist. I haven’t worked, paid any bills or checked my bank balance; I haven’t opened my post or returned my library books, and my emails remain unanswered. My life has become routine and obsession.

But there are smudges appearing on the horizon. If you lock the world out it has an insistent way of banging on the door until you have to let it in. I’m lucky in that I’m a (starving) writer so can work from home; if I had a regular job I’d have been back last week. But I can’t bring myself to send off another chapter to the publisher, another article to a magazine, write something that isn’t about Izzie and Lizzie and me. Not yet.

My baby bubble is going to burst and the real world is going to come flooding back in. But for today, at least, I have all that I need right here.

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I mean, why would I want anything other than these two darlings?