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.

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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

Aspie Daddy

Welcome to Aspie Daddy, the website of Gillan Drew, author of An Adult With An Autism Diagnosis: A Guide for the Newly Diagnosed. Here I blog about autism and parenting and whatever else takes my fancy.

I was diagnosed with Asperger’s Syndrome at 28, and now nearing forty, I live with my autistic wife and two infant daughters on the border of Dorset and Hampshire.

If you get the chance, check out my fiction website The Struggling Writer where you can read some short stories and novel extracts and some of my rants about writing.

Thanks for dropping by.

Gillan

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