Children with autism become adults with autism

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

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

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

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

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

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

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

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

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

Ever get the feeling you don’t exist?

An Adult With an Autism Diagnosis

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

Here is the blurb:

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

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

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

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

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

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

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

Happy reading!

Gillan Drew

 

Failure and success in writing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for reading,

Gillan Drew, author (yay!).

MMR and Autism

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

There. Now we can get started.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Autistic Building Blocks

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

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

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

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

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

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

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

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

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

Izzie is ten months old.

IMG_1252
That’s the wrong colour, dumb ass!

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

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

And Izzie has NONE of them.

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

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

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

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