Some Very Good News About Autism

In 1990, when computer scientist Tim Berners-Lee invented the World Wide Web, I was expecting my first child, and the mysteries of computers and the internet were completely beyond me. I didn’t realise it then, but this lack of technological ability would prove to be a real blessing not only to me but also to my four amazing children.

Twenty-six years ago when my son was born, followed a few years later by his younger brothers, dire predictions for their future were all I ever heard: ‘He’ll never find employment when he leaves school’; ‘The best thing to do is think about putting him in a home’; ‘Don’t you wish you’d had an abortion rather than having another one of those children?’ Yes, this kind of blatant negativity (and much more besides) was pretty standard stuff for me to deal with back then, and although it hurt a great deal, I completely disagreed with it and never once let it stop me doing everything I could think of to help my boys learn, and grow up into happy, independent adults.

But I wonder: would I have been quite so determined if I was faced with the torrent of doom and gloom that today’s autism parents have at their fingertips? Would I have held my nerve after reading endless stories of depression, bullying, murder and suicide? And would I have pushed quite so hard if I’d been presented with studies full of flawed ‘evidence’ that my boys would never progress? The answer, as it happens, is ‘yes, I would’ because (as anyone who knows me will tell you) I’m ridiculously stubborn like that, but I’ll guarantee there are plenty of parents out there who’ve given up hope and given in to despair in the past after looking autism up online.

Seven years ago I started a charity called Autism All Stars, with the sole intention of offering positive and optimistic news to autism parents and to autistic people themselves. For the first couple of years, I’d spend hours every day trawling through websites and social media posts looking for encouraging stories, and believe me, they were few and far between. Can you imagine what I’d have come across if I’d searched the internet twenty six years ago? Sadly, I can.

The good news is that nowadays I have a permanent backlog of happy, uplifting and inspiring articles waiting to be posted on our Facebook, Twitter and Pinterest pages: autistic adults receiving sacks and sacks of cards and presents on their birthdays after online appeals by their relatives; children on the spectrum whose lives have been transformed by service dogs or even by the family cat, and a whole array of sensory-friendly experiences for families to enjoy – from relaxed theatre and cinema performances to ‘quiet hours’ at supermarkets and shopping centres.

It’s not that the bad news isn’t still out there doing the rounds of course, it’s just that so much more is now known about the incredible potential of autistic people. Not only that, but so many more members of society are willing to accept and embrace them now in ways I could only have dreamed of all those years ago.

So, in the interests of spreading the good news even further, here are twenty of the thousands of heart-warming stories I’ve shared in the past. Each link opens in a new page so you don’t have to worry about losing your place, just click and enjoy!

The simple moment an autistic man was treated just like everybody else.

The introduction of autistic engines on Thomas the Tank Engine.

A mother thanking the staff of a Tesco store who helped her during her son’s meltdown.

The work of Michael McCreary: a successful and incredibly funny comedian with Asperger’s.

How Harry Potter character Luna Lovegood helped an autistic woman accept herself just as she is.

The time that Mothercare sent a whole box of shoes to an autistic boy whose mum couldn’t find them in store.

The Asda staff who found an adorable way to help an autistic schoolboy cope in their busy supermarket.

The announcement of the first autistic Power Ranger.

The stranger hailed a hero after helping an autistic boy on a train.

The series on CBBC featuring an autistic character in the starring role.

Sir Anthony Hopkins talking about how being on the spectrum has helped him as an actor.

The autism-friendly music festival held in Reading.

Sesame Street introducing a new character with autism.

The non-verbal autistic boy who uses sign language to communicate with his deaf shelter dog.

Susan Boyle talking about her relief at being diagnosed with Asperger’s.

The wonderful barber who’s helping autistic children cope with haircuts.

The story of why the inventor of Pokemon credits his autism with helping him create the whole phenomenon.

The hotel that employs a full staff of autistic people.

The company that made 500 of their discontinued cups for an autistic boy who loved them.

The autistic man who dresses as Santa and runs a sensory-friendly grotto for children with special needs.

These stories are just a small example of what’s happening in the world today, so as you can see, slowly but surely, attitudes towards autism are changing for the better, and that’s very good news indeed.

On a personal note, if you’d like to see what my boys are up to now, you can read more about them in my Facebook album ‘Never Tell Me the Odds’.  The title is, of course, a Star Wars reference, because as I’ve mentioned before: I’m a nerd and always will be.

This then, is the post you need to share with anyone who’s struggling to get to grips with a new autism diagnosis, and with anyone whose bad days far outweigh the good. This is the post you need to share everywhere across social media, because you just never know who might see it and feel a little less alone.

You see, this is the post I so desperately needed to read when my boys were small, and the only voice I heard saying anything positive about their future was my own.

 

 

When Laces Tie You up in Knots

If there’s one sound that’s guaranteed to strike fear into the hearts of autistic people across the land (and their parents too, of course) it’s someone uttering the word ‘shoelaces’.

Now, I’m quite certain that somewhere on the planet there’s an autistic child who’s never struggled to tie their shoes, but I can honestly say that in all the years I’ve been dealing with the condition I’ve never actually met one. This tells me that one of the most common battles autistic children (and adults) face is learning to successfully wrestle their laces into submission. To anyone thinking of leaving a comment saying ‘Not all autistic people have problems with shoelaces, you know…’ I say this: “Thank you for your input; I guessed as much. Now please go about your business because this post is clearly not for you.”

So why do so many autistic people get tied up in knots over something as simple as fastening their shoes? Well, the answer is that there’s really nothing simple at all about tying laces – they’re fiddly, slippery and just plain complicated to deal with – and that’s without having to handle autism at the same time.

People on the spectrum have problems with their fine motor skills which affect things like the strength of their grip, and making specific gestures such as the ‘pincer’ movement – the one you need to work out before you can fasten and unfasten buttons, brush your teeth, hold a knife and fork or use a pencil. Parents often get exasperated by how slowly their child is picking up these skills, but it’s important to remember that they’re not just dawdling or being awkward if they don’t get it the first (or even the one hundred and first) time, because they’re actually working very hard at it, it’s just that their brain wiring makes it particularly tough to learn new skills in this area.

Another thing autistic people have trouble with is ‘sequencing’ – understanding the concept of cause and effect – which also makes learning new skills decidedly tricky. Instead of instinctively noticing and remembering all the steps in a sequence, they have to learn every step individually and consciously memorise their place in the sequence. Needless to say, this can be extremely hard work and takes quite a bit of extra time to master.

Needless to say, never were these two skill sets required more than when taking on our old adversary: the dreaded shoelace.

All four of my children have struggled valiantly with this challenge over the years and many tears of embarrassment, frustration and rage have been shed in the process. I’m pleased to say though, that as my youngest turns ten, we’ve almost cracked it. ‘Almost’ being the operative word there.
When one of my sons was nine, he came home from school with a face like thunder. ‘Why am I such a baby?’ he demanded to know. ‘Why can everyone else tie their shoelaces and I have to get my friend to do mine? I must be an idiot!’ As tough as this was to hear, I took the opportunity to explain to him that this was part of the way autism affected him, and encouraged him to look at it in a more positive way instead. I pointed out that lots of his friends (who could already tie their own laces) struggled terribly with maths problems, whereas he could solve them in his head in a fraction of a second, and this was because being autistic made some things really easy for him and some things really hard. We talked it through and agreed that the best way forward was to be grateful for, and enjoy, the things he was good at, and work a little bit harder on the things he found difficult – just like all his friends did. It took us another six years, but we got there in the end.

Meanwhile, if you’re having trouble with lace tying, what can you do to help sort things out? Firstly I’d recommend watching a video on YouTube by the wonderfully named ‘Unstoppable Mother’ that describes a very simple way to tie laces. If that method doesn’t work for you, lots of other videos showing different approaches will pop up down the right-hand side, so have a look through those and see what you think. Hopefully with a bit of luck and a whole lot of patience you’ll solve the problem once and for all.
And if you don’t? If there’s just no way it’s ever going to happen? Don’t despair, because the days of having to resign yourself to a life time of slip-ons are long gone. Unlike twenty-odd years ago when my boys were small, the internet can now offer all kinds of ingenious answers.

First of all, there are rubberised clips called Hickies. They’re wipe-clean which is always a bonus, and as well as solving the problem of doing your laces up, they also offer something else that’s bound to be popular with autistic people: variable pressure when they’re fastened, so you don’t end up with parts of your laces feeling too loose and other parts too tight. Brilliant stuff.

Secondly there’s a product called U-Lace which offers all the same benefits as Hickies, with the added bonus of looking exactly like normal laces. Both products come in every colour you could possibly need, plus of course the usual black or white, and once they’re fitted (which only takes a few minutes) they turn any lace-up shoes, trainers or boots into slip-ons. Both products are available on Amazon too.

What I would’ve given to have been able to choose from the whole range of styles in the shoe shop instead of just those that fastened with Velcro or didn’t need to be fastened at all.
I’ve lost count of the number of meltdowns I’ve dealt with and low-flying shoes I’ve dodged during the delightful ‘learning to tie our laces’ years. You know what would’ve been really useful back then? A blog post explaining my options!

Why No-one Represents the Autism Spectrum

What if I told you that one of my three sons was diagnosed as the most profoundly autistic child several specialists had ever seen; that he had no spoken language ’til he was almost five and regularly mutilated himself, smeared poo round the house and physically attacked me every day for many years: bruising, scratching and biting me with all his might? Would that represent autism to you? Maybe, maybe not.

What if I told you that one of my three sons graduated from a highly prestigious university with a degree in Law and Politics; that he lives in his own house, has a great job in central London and is engaged to a beautiful young woman who genuinely adores him? Would that represent autism to you? Again: maybe, maybe not.

But what if I told you these are both descriptions of the same son? Then what would you think? Perhaps you’d believe he must have grown out of his autism, or maybe that he’d been misdiagnosed when he was younger. Possibly you’d decide that he had to be a one-off – a freak of nature unlike any other person on the planet. In each case I can totally understand your thinking, but in each case you’d be mistaken.

My son’s story might be unusual, but it’s far from unique, and since there are millions of people living with autism across the world, there are millions of different stories too, each representing a living, breathing person with their own thoughts, feelings, experiences and ideas. So how can we ever hope to represent it?

That’s the thing about being autistic: it can’t be represented as either one thing or another, any more than being human can. It also can’t be represented as something that affects a particular person in the same way all the time, because autism simply doesn’t work like that; it ebbs and flows, sometimes staying quietly in the background, and at others becoming quite overwhelming.
Since it’s described as a ‘spectrum’ condition, it’s easy to understand why people might think it’s a straight line running from severe to mild, with everyone having a fixed place somewhere along it, and being affected by it in the same way every day, but in reality the autism spectrum is a very different thing indeed.

In my book I describe it as an ever-changing kaleidoscope, and say:
“Although every kaleidoscope works using the same basic mechanism, each one produces an endless variety of different shapes, patterns and colour combinations which is what makes them all so unique and fascinating. In the same way, while people on the autism spectrum might show similar behaviour traits because they have a similarity in brain wiring, each individual autistic person will develop their own unique personality, perspectives and ideas. Autistic people don’t experience life in a straight line any more than neurotypical people do; their sensitivity grows and shifts, expands and contracts depending on the tiniest of details and the smallest of changes.”

Representing one person with autism is difficult enough then, because of the way its effects change from moment to moment, but when it comes to the entire autism spectrum, it’s pretty much impossible.

One of the criticisms I hear most often from autism parents – and autistic people themselves –  is that a particular article ‘doesn’t represent my experience of the condition’. They’ll complain it’s either too positive and doesn’t show the seriousness of just how disabling living with autism can be, or too negative and doesn’t highlight the fact that autistic people can achieve great things in their lives. The truth is, when it comes to autism, if you’re going to describe anything or anyone specific, you’re absolutely going to fail to represent a lot of autistic people, because everyone’s experience of the condition is so unique.
Think about it this way: is there a one-size-fits-all description that sums up what it means to be human? Of course not, but does that put anyone off trying to describe it? No; instead it inspires people to explore every aspect of the human condition, doing their best to unravel its mysteries in new and intriguing ways, in the hope of giving us a deeper understanding of who we are.

I watched a great documentary recently called ‘Chris Packham: Asperger’s and Me’ about the life of one of our much-loved TV presenters and wildlife experts. In it, Chris describes how he fought against being autistic in the past but has now come to accept and embrace it, and makes the very important point “I’m not a typical autistic person, because there is no typical autistic person.” There are those who’ve criticised the programme for its failure to highlight the more severe nature of the condition, believing it gives people the wrong impression of what autism is, but that’s not how I feel about it at all.

It seems to me that the only way to truly represent autism is to keep on putting a whole variety of information out there for everyone to see: writing about it, talking about it, making films and plays about it – anything and everything that represents all the different characteristics of the condition: the positives, the negatives and everything else in-between. Let’s look at it from every angle and introduce the world to our own personal experience of autism, whatever it might be. The more we do that, the greater chance there is of allowing people to put the pieces together and see the bigger picture, and ultimately of autism being understood and accepted in all its incredible diversity.

None of us can represent the whole of the autism spectrum, so instead of complaining when something doesn’t resonate, I’d much rather hear people applaud each other’s courage in sharing their stories with an often hostile world.

Here’s to recognising every lifestyle that’s highlighted, no matter how diverse, and appreciating them all for what they really are: different strands of the rich, vibrant and often breathtakingly beautiful fabric of life on the autism spectrum.

Why is my Daughter Such a Drama Queen?

 

Why does my daughter throw a massive tantrum when I brush her hair or put her socks on? Why is she incapable of hearing bad news without working herself up into a frenzy? Why does she have a hissy fit whenever there’s a change of plan? And why, oh why, can she behave perfectly at school all day, but turns into a screaming she-devil the second she gets home? The answer is simple: my daughter is a drama queen.

Or is she?

If you can identify with everything I’ve described in the first paragraph, there’s a possibility your daughter might not be a drama queen at all, but might instead be on the autism spectrum. If we remove terms like ‘tantrum’, ‘frenzy’, ‘hissy fit’ and ‘screaming she-devil’ and replace them with the idea that she could be having a meltdown (something that’s easily mistaken for these things but is very, very different) there’s a much better chance of finding some solutions and forging a positive way forward that works for both of you.

When it comes to hair brushing and sock wearing, it’s important to realise that being overwhelmed by the input they receive from their senses can be one of the biggest day-to-day challenges autistic people have to face. It’s caused by something called sensory processing disorder, or SPD as it’s known, which means that not only can they see, hear, taste, touch, smell and feel things other people can’t, but they find it almost impossible to prioritise these sensations, so more often than not they’re experienced as being incredibly intense and even painful. Brushing tangles from your daughter’s hair might be agonising for her, and the seams on her socks rubbing against her toes could make her feel like she’s treading on razor wire. My advice would be to invest in a Tangle Teezer and a good quality detangling spray, and think about buying some seamless socks. In my experience these can be pretty expensive though, so if you can’t afford them, I’d suggest turning her socks inside out – it’s always worked like a charm in our house.

Handling your daughter’s explosive reactions when she hears anything distressing can seem impossible, but when you understand what’s making her respond this way, her behaviour can actually make a lot of sense. Autistic girls are sometimes referred to as ‘little philosophers’ because of their deep, almost mystical connection with nature, animals and the world as a whole, and not only are they connected with it, but they feel its pain as if it were their own.
Far from lacking in compassion as many people believe them to be, girls on the spectrum (and boys too, for that matter) often have something called ‘hyper-empathy’ where they experience the suffering of others at such a profound level that they’re overcome with grief at the very thought of it. This means handling bad news is definitely not their strong suit, and just for good measure, they can sometimes experience a delay in processing difficult feelings, which leads to what looks like a massive overreaction to a very minor incident, but is in fact a sign that they’re expressing their grief for something else entirely – something they simply found too painful to process at the time.

Meanwhile, dealing with change is something everyone on the spectrum struggles with. There are so many different reasons for this, but in a nutshell, their world is often too big, too bright, too fast and way too confusing to handle at the best of times, so throwing unexpected changes into the mix will inevitably upset them and make them feel out of control. What your daughter needs in these situations is for you to stay calm (believe me, I know it’s hard) and help her find ways to overcome her uncertainty and reduce her anxiety.
One of the best ways I’ve found to achieve this is to help my children learn relaxation techniques – my therapy programmes are ideal for this – because as we all know, the only certain thing in life is change, so with the best will in the world you’re not going to be able to shield your children from it all the time.
Other than that I’d suggest using countdown timers to help the transition from one thing to another, because sometimes all your daughter will need is a bit of extra time to mentally prepare herself when things change. Visual timetables are really useful too and can make it much easier to understand what you’ve got planned; they’re also a great way to show how events can be moved around without disappearing entirely from the day’s activity list.

Finally, as many parents are all too aware, one of the most difficult things about having a girl on the spectrum can be getting a diagnosis in the first place. This is partly due to the fact that despite some improvement in recent years, diagnostic tests aren’t really designed to accommodate girls (so they don’t tick all the right boxes to qualify as autistic). Girls tend to be better at picking up social cues than boys, and more focussed on relationships rather than objects. They’re also more interested in pretend play, so it’s easy to see why so many of them ‘fail’ their autism assessments.
Another reason however, is that girls very often exhibit behaviour called ‘passing’ or ‘camouflaging’ – in other words doing whatever it takes to be invisible in a crowd no matter how much stress it’s creating inside them, and the reason for this – put simply – is that they’re hard-wired to want to fit in.
As a result, autistic girls are often model pupils: neat, organised, polite and beautifully behaved, while struggling to hold things together on the inside and becoming gradually more and more overloaded with the stress of following all the rules. This leads to something known as the ‘delayed after effect’ when all their pent-up emotion comes rushing out in an overwhelming torrent as soon as their brain feels it’s safe to relax. ‘And when might that be?’ I hear you ask.  Yes, you’ve guessed it: when they get home from school.
I explain why this happens in much more detail in my book, as well as outlining what to expect if your daughter is autistic. If she is, then Jennifer O’Toole’s ‘Sisterhood of the Spectrum’ and ‘Aspergirls’ by Rudy Simone are both great books that offer plenty of advice on living with female autism.

Probably the best piece of advice I can give you though, if you’re parenting a girl on the spectrum, would be to accept her as she is and let her be herself. Help her to manage strong emotions without making her think she’s ‘just being silly’ or ‘making a fuss about nothing’. Find the strategies that suit her personality and help her incorporate them into her daily routine, so she grows up understanding the importance of self-care.
She might need lots of high-energy activities to help her let off steam, or she might prefer to curl up with a good book and enjoy her own company, quietly processing her thoughts in the privacy of her room. She could be obsessed with fashion and adore anything pink and glittery, or be more comfortable in well-loved t-shirts and worn out joggers. Either way, as long as she’s happy, let her get on with it and teach her to be proud of her choices.
The world will come along way too soon and try to push her into thinking she’s not clever enough, not thin enough, not beautiful enough, and not plain good enough, and when it does, make sure her self-esteem is so high that she pushes right back and stands her ground. There’s no ‘right’ or ‘wrong’ way to be a girl (check out the excellent A Mighty Girl for inspiration and female role models galore) so whoever she is, encouraging her to be proud of her individuality and showing her how to handle the challenges it brings are two of the most important things you can do for your daughter, whatever her age or ability.

5 Healthy Foods Your Autistic Child Won’t Eat

If you’ve been living with autism for any length of time, you’re going to be very well aware of the term ‘food aversion’ and have plenty of experience of exactly what it means. If you’re new to the condition however then brace yourself, because we’re not talking ‘picky eater’ here, we’re talking full on refusal to eat the ‘wrong’ foods, to the point of illness and eventual malnutrition. Seriously.

This is a light-hearted look at some of the most common forms of food aversion, but it has a serious message too: if you’re living through this kind of thing then don’t panic – it’s completely ‘normal’ for someone on the spectrum to behave this way. There’s nothing wrong with your child and nothing wrong with your parenting skills, no matter how much helpful advice you’re getting from other people telling you otherwise.

If the question ‘Can’t you just make them eat?’ seems familiar to you then trust me, you’re definitely not alone.

1. Anything Vaguely Resembling Fruit or Vegetables

Before my children were born, I had no doubt whatsoever they would eat their ‘Five a Day’ without the slightest complaint. What fun I would have designing visual delights such as the cute ‘tomato and olive ladybirds’ and charming ‘banana and raisin sausage dogs’ that came so highly recommended by other creative parents. How could they possibly resist? Well, as it turned out, they could (and did) resist most loudly and with extreme violence, in just the same way they did when it came to pretty much everything else I suggested.
Not only could fruit and vegetables not be cunningly disguised as appealing insects or animals, they could also never be chopped, mashed, pureed or otherwise broken down and inserted into their food without the risk of instant detection, followed by all the dire consequences such a thing would bring down upon my head – often quite literally.
The best advice I can give you here is firstly to look for added vitamins and minerals in any of the foods your child will eat (sliced bread and cereals can be a great source) and secondly to invest in a good quality liquid multi-vitamin which you can gradually – very gradually – add to their favourite drink.
Mostly it’s going to be the shape, colour, smell or texture of the fruit and veg that’s upsetting them, so there’s going to have to be a bit of trial and error when it comes to finding out what your child prefers. They might also have trouble with chewing and swallowing which could be putting them off, but do persevere because these skills will improve with practice. Just make sure you introduce new foods one at a time, and never commit the unforgivable crime of letting one food item come anywhere near another.

2. Foods that Touch on Their Plate

All autism parents know from bitter experience that allowing any foods to touch will instantly turn them into the most deadly form of poison, no matter how healthy they were to begin with.
When my eldest son was small, his idea of eating a ham sandwich was to demand three separate bowls: one containing ham, one bread and the other butter. These he would sit and happily devour, but put them together on a single plate and he’d unleash the kind of fury you’d expect from a Viking berserker going into battle.
It took me years to get him to progress to eating them at the same time, and many more years to find out why on earth he was so upset by the idea of them being put together in the first place.
It turns out autistic people have something called sensory processing disorder (SPD) and when it comes to food, the way each individual item is visually processed actually affects its flavour. Who knew? Well, not me, obviously. Christopher needed to be able to see and understand different foods one at a time, because seeing them placed too close together was confusing his senses, mixing the flavours and making them taste completely different.
Fortunately you can buy special divided plates nowadays, or I’d suggest buying lots of small plastic pots and grouping them together. Keep working on mixing foods though, and with luck you’ll get there one day – we did.

3. Something They’ve Eaten Somewhere Else

Picture the scene: You arrive to collect your fruit-and-vegetable-hating child from his grandparents’ house, only to be told that he ‘always eats his greens for Nanny.’ Delighted, you secure the recipe and excitedly make the same dish at home, only to have it unceremoniously thrown across the room at you. Clearly you’re just completely rubbish at this parenting lark; there can be no other possible explanation.
Except that there can. Phew.
The answer to this particular mystery lies with our old friend SPD. You see, your child’s senses are busy taking in information from their surroundings all the time, and because this information is different when they’re at someone else’s house, it actually makes the same food, prepared in exactly the same way, taste very different depending on where they are when they eat it. I know: strange, but true.

4. Fancy Food in the Finest Restaurants

Yep. You’ve guessed it: no matter how appetising something looks or smells to everybody else, or how beautifully it’s being presented to them, your child will have absolutely nothing to do with it. Tutting, eye-rolling and even the odd gasp of disgust from the other diners will have no effect whatsoever on their refusal to eat, although it will have plenty on your peace of mind.
When my middle son was on holiday in his early teens, his father took him to one of the best restaurants in Portugal, where he quickly earned the nickname ‘Pasta Boy’ thanks to his insistence on eating only plain, boiled spaghetti, much to the horror of the cordon bleu chef who was asked to prepare it for him night after night.
As you’ve probably realised by now, this was thanks to SPD yet again. Restaurants are noisy, smelly, bright and crowded places, full of potentially overwhelming sensory input, and the only way Dominic could cope without going into overload was to eat something soft, white, easily digested and very familiar.
If you’re going to eat out, I’d suggest taking some ear defenders or headphones for your child, as well as plenty of distractions. I’ve put together a whole list of different ideas in my book, covering what to take with you in your ‘survival kit’ when you’re venturing out together.

5. That One Item You’ve Just Stocked Up On

You know the score: You finally find something your child likes to eat (Halleluiah!) and they don’t just like it, they absolutely love it. Actually, they’re obsessed with it, to the complete exclusion of almost every other food group imaginable, but who cares? They’re eating!
Feeling like you’ve got this parenting business sussed at last, you rush off to the supermarket and clear the shelves of every available packet, tin or bottle of this miracle product while other parents look on in horror at your excessive bulk-buying of tomato ketchup, frozen peas or chocolate ice cream. Do you care what they think of you? Of course not; you’re way too exhilarated to notice.
But rookie parents beware: this scenario will last just long enough for you to let down your guard. The second you’ve finished packing them away in the cupboard, your child will be gripped by a strange aversion to the very sight, let alone the taste, of them. Why? Now, if I had the answer to that one, I’d be a millionaire by now.

 

The Appropriation of Autism

Since, at 51, I’m officially an ‘Over 50’ – and really should be finalising my funeral arrangements by now according to the adverts suddenly appearing on my TV and Facebook feed – you won’t be surprised to hear that many terms used today are completely new to me. ‘Cultural appropriation’ is definitely one of them.

When I was young, people were free to dress up in any costume that took their fancy – from geisha to Apache warriors – without ever having to worry about being accused of some dark, hidden agenda. For many, many years, wearing these outfits was seen as a tribute to a different culture, and a sign that you actually liked what they stood for, but now, thanks to the usual highly vocal minority, those days are rapidly disappearing.

The concept of cultural appropriation, like political correctness, certainly has its place. When people mimic the appearance of other cultures with the sole intention of ridiculing and devaluing them then there’s something seriously wrong, and of course it needs to be addressed. Other than that though, as someone whose life is devoted to celebrating the acceptance of diversity, I’ve got to say that I still see this kind of thing as very much a positive.

On my travels round the internet, I’ve recently noticed an increase in the number of discussions about how autistic people are having their ‘culture’ shamelessly appropriated by people who’ve adopted the ‘Geek Chic’ and ‘Gamer Chic’ lifestyles. Hmm…I think someone’s kind of missed the point here: Autistic people don’t become gamers or geeks to be part of any specific peer group; it’s other people who decide to categorise them this way. The truth is, they’re simply being themselves and doing what they love. If others have seen something attractive in them and it’s turned into a way of life worth copying, shouldn’t we be pleased? Personally I think it’s fantastic that the nerds, the weird kids and the outcasts (people of all ages, not just children) who’d give anything to feel a little more accepted – a little more (Heaven forbid) ‘normal’ – are now being seen as potential role models instead of the peculiar oddballs they were when I was growing up.

While we’re on the subject, here’s another popular term that’s new to me: ‘sapiosexual’. In a nutshell, it means you’re attracted to intelligence, regardless of looks, social skills and so on. This is now a well-recognised thing apparently – Benedict Cumberbatch’s portrayal of Sherlock Holmes being a good case in point – and if anyone thinks autistic men’s (and women’s) love lives haven’t benefitted from it then they’re very much mistaken. Do you think they felt their culture had been appropriated when they became attractive to other people and found love and happiness as a result? I’m quite sure they didn’t give it a second thought.

What prompted me to write this post however, was reading various people’s outrage about the ‘cultural appropriation’ of none other than the humble fidget spinner. Yes, you read that correctly: the fidget spinner. ‘Oh, now you want to play with my son, just because he’s got a fidget spinner…’ complained one woman. ‘Where were you when he was alone and friendless? You have no right to play with his things.’ ‘It makes me so angry’ whined another ‘to see neurotypical children appropriating sensory toys like this…’ Resisting the urge to gouge my own eyeballs out with a blunt spoon, I decided to share my thoughts about this horrifying cultural crime wave with you here instead.

I genuinely believe that there’s nothing wrong and everything right about the idea of children (and adults) finding common ground and connecting across society’s complicated and often confusing divides, whether they’re based on nationality, religion, sexuality, neurological wiring or anything else.

In my book I talked about how things have changed over my lifetime and said: ‘Autism-friendly cinema and theatre performances, vast social media support networks, Special Educational Needs departments in mainstream schools and custom-designed toys, clothing and equipment to help make life easier for families living with autism are just some of the positive steps I’ve noticed and celebrated along the way.’
These things are gradually becoming more and more accepted in mainstream culture, and God knows it’s been a long, hard road to get them there. Surely – surely – we shouldn’t now be trying to keep these things exclusively for our own use, while excluding anyone who doesn’t fit within our understanding of ‘being autistic’. Isn’t this precisely the sort of divisive and discriminatory behaviour so many of us have been fighting against for so long?

My charity Autism All Stars provides a portable sensory den at lots of its events that’s really popular with people of all ages and abilities. Seeing autistic children playing happily alongside children who’ve never even heard of the condition doesn’t make me angry; it makes me happy. Should I start banning neurotypical children from using the sensory den on the grounds that autistic people’s culture is being appropriated? I think not. I might ban the occasional neurotypical kid for being a little git and lobbing the toys at other children’s heads, but to tell them they can’t play with autistic children because they’re not autistic themselves seems completely counterproductive to me.

Sensory toys are becoming more and more widely available on Amazon and EBay nowadays, and even weighted blankets are making the jump into mainstream consciousness, with a Kickstarter campaign for ‘Gravity: The Weighted Blanket for Sleep, Stress and Anxiety’ recently raising over four and a half million dollars. Wow! Is this an outrageous example of cultural appropriation? Does this mean that everyone will soon consider themselves to be autistic? Should we be concerned?
Well, no.

What we should be doing is celebrating the fact that society at large is finally getting to grips with something many of us have been saying for a very long time: we are all far more alike than different. All of us.

In conclusion then, if you’re going to shout about the need for autism acceptance (and goodness knows I shout about it all the time) then please don’t take offence when autistic needs are finally accepted and embraced by the general public. Not only does it make no sense, but it perpetuates the myth that autistic people should be seen as somehow separate from everybody else, and that can only serve to delay a truly integrated and accepting society for us all.

Conversations with Crystal

So today I’m starting a whole new chapter of my life (excuse the pun) by becoming a blogger. It’s something I’ve toyed with for years but somehow have never found the time to pursue, but today all that’s changing and I’m taking the first of many small steps on what I’m sure will be a challenging, enlightening and ultimately very fulfilling path towards a happier future.

The first bit of advice I’ve been given is to always imagine that I’m talking to one particular person – my ideal audience member – and basically have lots of conversations directly with them, to stop me second-guessing myself and constantly wondering about whether or not I’m going to offend anyone by challenging their ideas about ‘Autism, the Universe and Everything’. Well, there’s your first clue as to who my ideal audience member might be: they’ll have to be just a little bit nerdy and understand references like that one (which for the uninitiated was a play on the title of a famous Douglas Adams book). Yes, I am a giant nerd, and proud of it too, so you’ll get used to that about me very quickly.

Secondly they’ll have to have a bit of curiosity about autism and be prepared to do some research if I mention anything they haven’t come across yet. One thing I can’t stand is being patronised, so I can promise you I’ll never talk down to you or over-explain anything. The down side of this is that after a whole lifetime of living with autism every day, I’m bound to forget sometimes that not everyone knows the meaning of every single autism-related expression, and I might therefore also forget to explain something important. Apologies in advance if I do this at any point, but a quick trip to Wikipedia should sort it out for you, so no harm done.

I’m guessing the majority of my readers will either be autistic themselves, or be autism parents or grandparents, special needs teachers or carers (although it’s not essential of course) so my ideal audience member is definitely living with the condition every day in one way or another. They struggle at times because that’s just the reality of the condition, but they’re always on the lookout for ways to improve their situation, and are probably doing a much better job than they give themselves credit for.

Finally, and most importantly of all, they’ve got a great sense of humour, and even when things are at their toughest they can still find a reason to smile and keep their head above water. They understand the difference between laughing at something (which is never acceptable) and laughing about something (which is essential on the front lines of the autism world unless you want to totally lose your mind on a daily basis) and equally, they know when it’s okay to break down and cry, and that crying can often make you stronger, not weaker.

I’ve named my ideal reader ‘Crystal’ because to me it represents something with many different facets which are all equally interesting and beautiful. Crystal could be young, old, black, white, gay, straight, strictly religious or the world’s most devoted atheist, I really don’t mind. You’ll find no prejudice here, only a desire to help every single one of you to live a better life in your own unique way. I appreciate that sounds like the slogan from some dreadfully cheesy inspirational poster, but I mean it from my heart nonetheless.

Welcome, then, to my brand new blog. Please bring your sense of humour, curiosity and a genuine interest in improving the world for people living with autism, and I can promise you we’ll get along just fine!

I'm Helen: Autism advocate, psychotherapist, charity founder, author, public speaker and mum to four amazing children on the autism spectrum. About Helen

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One woman’s remarkable journey from desperation to hope, successfully parenting four children on the autism spectrum.

 

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