I recently watched Please Stand By, which is the story of one autistic woman’s journey towards independence and follows her on an adventure with the sort of highs and lows we can all relate to. Here are my thoughts on the film…
Played by the brilliant Dakota Fanning, our heroine Wendy is a bright, determined young woman who’s been placed in a group home following the death of her mother and is utterly devoted (like so many on the spectrum) to all things Star Trek. She dreams of returning home, being reunited with her sister and finally meeting her new niece, something which has been denied to her until now due to her unpredictable behaviour and the high cost of caring for her. When she sees an opportunity to change things – in the form of a Star Trek script writing competition with a first prize of $100,000 – she grabs it with both hands and sets about writing a deeply complex screenplay the likes of which only a true super fan could produce, or indeed appreciate.
In the early scenes we see Wendy following detailed instructions and routines covering everything from having a shower to speaking to customers in her job at the local Cinnabon store, where her inner dialogue consists of constantly checking and rechecking whether she’s doing things correctly. There is, however, a wonderful contrast that’s highlighted when she’s alone and working on her script. Her mind is totally focused and at ease; her fingers move at lightning speed across the keys and we hear the story unfold in all its glorious detail without a trace of hesitation or self-doubt. This really resonated with me and is something I’m sure many, many autistic people can identify with.
Everything is going well and the script is complete, but things take an unexpected turn when Wendy realises she’s missed the deadline for posting her competition entry and decides to travel to Los Angeles and deliver it herself. The fact that she’s not allowed to cross the busy main road and can’t catch the right bus without doing so causes her some concern, but with that classic ‘I’m on a mission and I refuse to see any boundaries’ determination that so many autistic people possess, off she sets with her faithful sidekick Pete the Chihuahua who’s dressed, rather appropriately, as a Star Fleet Medical Officer.
There are many twists and turns on their journey together and Wendy meets a variety of people who are either kind and helpful or take advantage of her naivety. While, on a positive note, some of them help her to problem solve without seeing boundaries (look out especially for the policeman who speaks to her in Klingon to help gain her trust) the film also focusses on the difficulties of navigating the world when you don’t see the potential danger in other people’s intentions. I found it a great illustration of why functioning labels can be so misleading, and how autistic people can shine in certain areas while struggling in others. As the film progresses, her main carer Scottie played by Toni Collette and her sister Audrey played by Alice Eve slowly start to understand this about her and begin to appreciate that there’s a lot more to Wendy than just her difficulties.
The film doesn’t sugar-coat the struggles living with autism can bring, including sensory overload and impulse control, and in one very powerful scene we see Wendy in full meltdown, repeating the phrase ‘Please stand by’ over and over again until she’s feeling calmer. At the same time though, it highlights many of the positives of the condition: the talents and skills so many autistic people possess, their kindness and deep connection with those they love, and especially their ‘out of the box’ thinking when it comes to problem solving.
I really enjoyed the film and thought the portrayal of a woman on the spectrum was handled very well. Wendy’s mixture of vulnerability and sheer ‘force of nature’ determination were highlighted in pretty equal measure, and although she doesn’t represent every autistic woman (any more than any neurotypical film character can represent every neurotypical person) there are plenty of common character traits that women with autism will definitely recognise in themselves.
So, does Wendy make it to Los Angeles? Does she manage to deliver her script on time? Does she ever get to meet her beloved niece? These are questions you’ll find answered if you watch the film, so I won’t spoil it for you here. What I will say is that Please Stand By is uplifting and highly relatable on many levels so it’s well worth watching, whether you’re a Star Trek fan or not (which, for the record, I most definitely am).
Live long and prosper, my friends!
Today I’m sharing another extract from my book – The Ringmaster’s Tale – discussing just how useful special interests can be when you’re parenting an autistic child (or adult). It’s perfectly understandable that at times you’ll feel like your child is unreachable, and the struggle to teach them new life skills can be disheartening to say the least, but with some perseverance and a bit of creative thinking, you might just find that the answer’s been right in front of you all along.
By its very nature, your child’s autistic brain wiring will make it seem as if they don’t actually want to learn new things a lot of the time. This isn’t true of course, but what is true is that they’ll have a deep, almost obsessive interest in some very specific things to the exclusion of pretty much everything else, and this can make learning new skills incredibly hard.
Dinosaurs, space, LEGO and trains are all very common fascinations for autistic children and they’ll be quite happy to repeat the same behaviours over and over again as long as they involve whatever their specific interest is at the time. If you want them to progress, you’ll have to entice them out of these rigid routines or they’ll get stuck.
Now, when my boys were young I was told the best way to do this was to take their special interests away, because apparently this would ‘make them’ become interested in something else. It was the ‘he’s got to learn’ mentality and just so you know, this doesn’t work with autistic children so save yourself (and your child) a lot of heartache and use a different approach. Since my eldest son Christopher’s LEGO and my middle son Dominic’s trains were the only things that gave them any peace of mind I thought it sounded downright cruel to take them away and flatly refused to do it, much to the disgust of my family and all the specialists. Instead I used their interests to build a relationship with them and help them learn, and thankfully this is the very advice given to new autism parents today.
So as I said, in the ongoing battle to widen your child’s life experiences you’re sometimes going to have to push them outside their comfort zone, and yes it’s going to seem like you’re in the middle of a war at times, but their special interests can act as a ready-made secret weapon to make the struggle a whole lot easier. You’re going to have to be inventive here but with a bit of creative thinking you’ll soon find ways to incorporate them into the learning process. If you can get to the point where your child’s love for their special interest is stronger than their fear of completing the new task, their motivation will change and you’ll start to get things done.
For example if your child is obsessed with trains but can’t cope with noisy, crowded environments, start by showing them footage of steam railways and build up to taking them for a day out on a steam train. Once you’ve mastered that you can repeat the process using more modern trains and with luck you’ll eventually reach the point where they can tolerate catching a train in the middle of rush hour. To your child this might seem like having fun, which it is, but it’s also a great way to teach them new life skills. It won’t all be plain sailing of course – there’ll be plenty of setbacks, I’m sure – but doing things this way, with your child’s special interest at the centre of it all, will definitely make the learning process a whole lot easier.
You can buy a copy of The Ringmaster’s Tale here: www.tinyurl.com/theringmasterstale
Now, what about those other common interests I mentioned? Well, let’s carry on with the creative thinking and see what we come up with.
Imagine your child is obsessed with space and they’re studying the Vikings at school. How would you engage their interest in something that seems so different from their specialist subject?
I’d start by asking them to look at the different names the Vikings gave the constellations, then work together to find out more about the mythology that surrounded their version of the cosmos. This could lead to a discussion about the Viking gods and goddesses, highlighting which character traits and values their society found most appealing. Which of these values to we still admire today, and which have changed? And so on, and so on.
LEGO, meanwhile, has endless possibilities for helping your child learn new skills; so much so that you can now enrol your child into a course of LEGO therapy, or even buy your own book about it and do it yourself. It can be used to help build language, learn about shapes, colours and numbers, improve manual dexterity and all the obvious things, but it’s also great for building and enacting social stories about people living and working together as a team.
Taking it a stage further, you could look up local buildings together and find one that appeals to your child, then arrange a day out to photograph it so you can recreate it in LEGO at home. This may seem like a simple thing, but can lead to all kinds of new passions emerging. Christopher loved to photograph buildings and went on to graduate from Leeds University with a First Class Masters degree in Architectural Engineering, so you really never know where this kind of thing might lead.
If your child loves LEGO then chances are they’ll also like Minecraft, which will help them no end with their computer skills. The good news is that it’s such a popular interest for people on the spectrum that you can now join the world’s only autism-friendly Minecraft site here: https://www.autcraft.com/
Last but not least come dinosaurs. Clearly the world will always need palaeontologists, just as it will always need Master Builders, so there’s definitely the option of pursuing this as a career, but how can you use it to teach your child about the other possibilities life has to offer?
Perhaps you could compare several different dinosaurs to the living creatures we have today, and see how they differ. How much food might a dinosaur need and what kind of environment would they require to stay healthy? This could lead to a discussion about environmental change and the care and protection of different species. You could also talk about the fields of Geology, Archaeology and Biology, using examples of how the time of the dinosaurs has influenced modern thinking in these areas.
On a smaller scale, you could use model dinosaurs to help with adding and subtraction, or encourage them to write poems and stories about dinosaurs, exploring how people might feel if they came face to face with one today.
The bottom line is that these special interests really are the key to reaching your child, entering their world and connecting with them on their own terms. Using the things their children love to engage with them is really what all decent parents do (think ‘princess parties’ and ‘football games’); autism parents just need to do it with a bit more flexibility and determination, but if you keep thinking creatively, you’ll get there, and by taking this journey together, you’ll enrich not only your child’s life but also your own.
Lots of people worry about saying the wrong thing to parents when they have autistic children and often end up putting their foot in it when they’re trying really hard to be supportive. With that in mind, here’s my guide to some of the things not to say, and why these supposedly helpful statements and useful pieces of advice can, in fact, turn out to be anything but.
1. He doesn’t look like there’s anything wrong with him.
Well, there’s a reason for that: it’s because there isn’t anything ‘wrong’ with him; he’s autistic, that’s all. Autism can be difficult to handle, goodness knows, but it’s not a disease and it doesn’t mean there’s anything lacking in my child, it just means he’s wired a bit differently to most other people, so he processes the world in his own unique way.
I’m sure this is often meant as some kind of compliment, but believe me, it’s really not helpful at all because it dismisses your child’s identity, and the very real struggles you’re facing every day.
2. Autism is just an excuse for bad parenting.
Interestingly, if you take the time to get to know the parents of an autistic child, you’ll find that far from being bad parents, they’re usually the ones who go the extra mile. Turning up with armfuls of sensory toys and handmade snacks is all pretty standard stuff, whether they’re going to the park or to yet another appointment with a developmental specialist. They also watch their children like hawks, constantly ready to step in and avoid anything that might lead to a meltdown.
Autism parenting is a tough and exhausting business where the normal rules very often don’t apply, so before you judge them, please remember, with autistic children it’s a case of ‘different needs, different agenda’.
3. I know everything about autism; I Googled it.
Ah, if only this were possible! The truth is that no-one – including the world’s leading experts in the field – knows everything about autism, because despite many years of research into the condition it still largely remains a mystery. To an extent I think it always will, because trying to understand what it’s like to be autistic is like trying to understand what it’s like to be human: as much as we learn about the subject, there’ll always be more to know.
What you can find on Google however is lots and lots of misinformation about the condition, so my advice would always be to keep an open mind, avoid stereotyping people on the spectrum, and if you really want to learn about autism, ask an autistic person.
4. Can’t you just make him eat?
Oh, silly me, why didn’t I think of that? Sigh.
If you could ‘make’ an autistic child eat, or indeed, if they’d ‘eat when they’re hungry’ (another one I hear all the time) then believe me, I’d have cracked this food aversion business years ago.
The bottom line is that autistic people aren’t just picky eaters, they have genuine reasons for avoiding many types of food; this stems from the unusual (and often very intense) way they process sensory information like taste, texture and fragrance. Many of them also have difficulty chewing and swallowing, so it’s perfectly understandable that they struggle with certain foods, so forcing a child to eat against their will is definitely something that would cause way more problems in the long term.
What autistic children need when it comes to food is lots of patience, kindness and understanding, plus a willingness to let them lead the way and explore new things at their own pace.
5. Don’t worry, boys always speak later than girls.
Although this is a generalisation, there is some truth to it, so yes, I agree, many boys do speak later than girls, but when it comes to autistic boys it’s a whole different ball game.
By the age of three and a half my eldest son communicated mainly through a series of low growls and high pitched screams, yet still people insisted that he’d speak when he was ready and that his lack of language skills was down to his gender. I therefore met with huge resistance in the family when I put him into speech therapy, but once he got the support he needed he never looked back.
All parents worry about their children, so it’s natural to try to reassure them like this, but if their child has autism, this is one of the main indications, so it’s always better to listen to their concerns rather than dismissing them.
6. What that child needs is better discipline.
Ah yes, of course. Perhaps I could shout at him, or threaten him with dire consequences if he doesn’t stop doing what he’s doing. Maybe I could even smack him, or take away his iPad and computer. Basically what you’re telling me to do here is make my child feel even worse when he’s already upset. Yep. That should do it.
This spectacularly unhelpful advice is often given when an autistic child is in meltdown, which is a very different scenario to a neurotypical child having a tantrum. Although I can understand the confusion here, because they can look very similar, the last thing a child in meltdown needs is more stress since that’s what’s causing the meltdown in the first place.
Parents of autistic children are often accused of being weak and easily manipulated because of their response when their child becomes overwhelmed and distressed, but it takes far more strength to stay calm and treat your child with compassion than it does to throw your hands up, scream and lash out at them.
Autism parenting is very different to regular parenting, and what ‘that child’ actually needs isn’t better discipline but better understanding, which, with luck, will eventually lead to greater acceptance and respect.
7. They didn’t have autism in my day.
To put it bluntly: yes they did. What they didn’t have was an education system that recognised the condition and offered the appropriate support. As a result, countless numbers of autistic people were written off as mentally defective and condemned to lives of intense misery and suffering. Trust me; there was just as much autism around in your day as there is now, but nowhere near as much autism awareness and almost no autism acceptance at all.
There have been autistic people for as long as there have been neurotypical people; it’s really as simple as that. Being autistic is a natural expression of human diversity, and to dismiss it as just a new-fangled idea or some terrible modern epidemic is very insulting to autistic people, as it denies them the right to accept themselves as they are.
8. Everyone’s a little bit autistic.
I know this comment is often kindly meant, but it can come across as a bit dismissive of the day to day struggles that people on the spectrum face. As it happens, you can’t be ‘a little bit autistic’ any more than you can be ‘a little bit pregnant’: you’re either born with your brain wired in an autistic way or you’re not. Lots of people can have social anxiety, prefer their own company, or have a passionate interest in one particular subject, but while these are all recognised autistic traits, having them doesn’t necessarily mean you’re on the spectrum, it just means you’re human. The causes and intensity of these character traits will be quite different in an autistic person to a non-autistic one, but since they’re both human beings, there’s bound to be plenty of overlaps.
A kinder way to put this idea to an autism parent is to say that we’re all more alike than different, however our brains are wired, then work together to find some common ground while incorporating everybody’s individual preferences.
9. Asperger’s is just a mild version of autism.
Trust me, there’s nothing mild about having Asperger’s. The confusion here comes from the idea that people with Asperger’s are ‘higher functioning’ than autistic people, and therefore find life much easier to handle. The idea that the autism spectrum is a straight line, with high functioning people at one end and low functioning people at the other, is a myth, because people’s ability to function can vary wildly in different situations, regardless of whether they have Asperger’s or autism.
The truth is that when it comes to diagnosis, the main difference between the two is that autistic people have delayed speech development and people with Asperger’s don’t. Many people also believe that having Asperger’s automatically means you have a higher IQ than someone with autism, although this isn’t what I’ve found to be true in many cases.
Since being on the spectrum is about SO much more than speech delays and IQ levels, the struggles faced by people with Asperger’s are every bit as real and overwhelming as those faced by autistic people, so they all deserve the same levels of understanding and respect, no matter what their diagnosis.
10. My friend’s son was autistic but he grew out of it.
Well, there are two possible scenarios here: either your friend’s son wasn’t autistic in the first place or he was autistic and he’s learned to mask his behaviours when he’s in public. There can never be a third scenario where he started off autistic and magically outgrew it. Sorry, but autism just doesn’t work that way.
Autistic brains are wired differently to neurotypical ones and always will be, but they’re no less incredible and complex, and can certainly learn coping mechanisms that make a person seem almost ‘normal’ to the untrained eye. It doesn’t mean they’re not autistic any more, just that they’ve learned to ‘pass’ as a neurotypical person in their everyday life.
There are a whole variety of genetic factors involved in the origins of autism, and although the way those genes express themselves is directly affected by a person’s environment (meaning the right support can be crucial when it comes to learning and evolving) their genetic makeup still remains that of an autistic person, and always will.
Again, this statement is often made as a way of offering hope to parents of autistic children who are struggling, but it’s actually far better to accept autistic people for who they are and embrace their differences, rather than aiming for a ‘normal’ life at the expense of their happiness and unique identity.
My Top 5 Runners Up…
1. Autism is totally over-diagnosed nowadays.
No. No it’s not. It can still take years to get a formal diagnosis.
2. Autism is caused by vaccines.
Autism has been around as long as humanity has existed; it didn’t just appear when we started vaccinating our children.
3. Asperger was a Nazi; does that mean you have Nazi syndrome?
Stop. Just stop.
4. Oh, I’m so sorry!
Please don’t be; I’m not.
5. Don’t you wish you’d had an abortion?
Yes, this has been said to me more than once, and no, I most definitely don’t.
Here we are in April, and as all autism advocates know, that makes it Autism Awareness Month. You’ll hear more about the condition on the news, see more shops offering ‘quiet hours’ for autistic customers and generally get a sense that the public are being given more information than usual about what it means to be on the spectrum. Naturally this would seem to be a positive thing and you’d be right to celebrate the increased publicity surrounding the condition, but within the autism community itself you might notice something else too: a war of words between those who promote ‘autism awareness’ and those who prefer to promote ‘autism acceptance’ instead.
When I was new to the autism world, I found the intense passion behind people’s arguments about this a bit confusing, and since I wanted my book – The Ringmaster’s Tale – to answer as many questions as possible, I included the following passage which helps explain the origins of this difference of opinion…
On 1st November 2007, the United Nations General Assembly passed a resolution making 2nd April ‘World Autism Awareness Day’, the idea being to make it a focal point of the year when people across the globe could learn about the struggles faced by families living with the condition. They could also use it as an opportunity to raise funds to finance research into the causes of autism and create changes in their communities that would lead to a more accepting, increasingly autism-friendly world. ‘What a great idea’ you might think.
In reality of course, when it launched on 2nd April 2008, very little was known about the true nature of autism and most people still thought it was a disease. As a result, a lot of the day’s focus was put on how terrible it is, how autistic people are a burden to their families and a drain on society and how the condition should be cured by eradicating autism from the face of the earth as quickly as possible.
Unsurprisingly, lots of autistic people didn’t like these ideas very much.
Over time, the autism community began to see the term ‘autism awareness’ as meaning being aware of autism with a view to curing it, leading to the introduction of another term later on: ‘autism acceptance’. The idea behind this one is that autism should be accepted as just another part of the diversity of human life, and society should be encouraged to adapt and make things easier for autistic people without patronising or pitying them.
Personally I have no problem with the term ‘autism awareness’ because to me, being aware of something represents the first step towards accepting it. If you’re not aware something exists, how can you accept it? Believe it or not, I’ve spoken to plenty of people over the years who are outraged at the idea that anyone still exists who hasn’t heard of autism. People like this spend their time complaining that there’s no need for autism awareness because everybody should already know all about it. Since this clearly isn’t the case, I prefer to spend my time accepting that many people don’t know much about it and helping them understand it a bit more so they can make their own minds up about the best ways to handle it.
I suppose a good way to differentiate between the two terms is to think about how young children learn to play with their peers: first they’ll play alone, then once they become aware of other children, they’ll play alongside them, until eventually they’ll gain enough confidence to interact with them and will start to play together – in other words, they’ll accept them as equals, and in turn be accepted as part of the friendship group. In essence this is all autistic people are asking for when they advocate promoting acceptance rather than awareness: the chance to be recognised for who they are, and to be treated with the respect and consideration they deserve by the wider community.
The important thing to remember though is not to get so hung up on the terminology that it stops you wanting to spread the word in the first place, for fear of offending someone. Every voice that’s raised in the positive promotion of autism, Asperger’s and their related conditions really does matter, and whether you use the term ‘awareness’ or ‘acceptance’ to describe what you’re promoting, if you talk about life on the spectrum with love, compassion and optimism, you’ll be helping to make the future a happier and more welcoming place for autistic people of all ages and abilities.
Let me point out right away that laughing about something (autism included) is definitely not the same as laughing at it.
Laughing at someone because they’re different and may be struggling with things other people find straightforward is cruel, unnecessary and, in my opinion, downright repulsive. We’ve all met bullies in our time who use laughter to isolate and belittle others, and I’m sure it won’t surprise you to hear that I have absolutely no time for people like that.
What I’m talking about here though, is laughing about the funny situations living with autism can bring, and learning to laugh about your own behaviour quirks if you’re on the spectrum yourself. Also, appreciating the kind of humour that appeals to autistic people, who are so very often portrayed as having no humour at all, when in fact nothing could be further from the truth.
Laughter itself is, as I’m sure you know, one of the most powerful forces on the planet. It’s a fantastic way to release tension and boost your ‘happy hormones’ which is something that’s very much needed when your life is touched by autism. Autism itself is a serious business, no-one’s denying that, but there are always some funny moments to be found along with the difficult ones if you have the right outlook.
Many people think it’s offensive to laugh about anything to do with disability or difference, but I can honestly say that without a sense of humour, I would have gone under years ago. It’s always such a pleasure to meet other people who think the same way, and are prepared to find a light in what’s often an overwhelmingly dark existence.
Being able to share a joke about the absurdities of life is a wonderful way to bond with others, and can make you feel like you’re part of an extended group or family. The ‘inside jokes’ that only autism parents or autistic people can identify with, are what makes them your tribe, and goodness knows we could all do with one of those to help us through the long, hard and often terribly isolated days.
Parents of children with additional needs don’t stop finding things funny just because their lives have turned out differently to other people’s, and in just the same way, those children themselves aren’t born without a sense of humour, so trust me, there’s nothing offensive about enjoying life and not taking yourself, or your supposed ‘disability’, too seriously.
While it’s true that autistic people very often struggle to understand the meaning of jokes, in my experience there are usually very specific things that make them laugh. Word play and puns, like this one from the wonderful Gemma Correll, can be very popular with people on the spectrum…
…as well as humour like this, which allows them to laugh about the literal way they interpret the world…
I always make a point of including lots of fun posts alongside the serious ones when I’m running my charity’s social media sites because I understand the value of lifting someone’s spirits, which has led to the Autism All Stars page being described as ‘the happiest place on Facebook’.
Someone else I can highly recommend if this is the kind of thing that makes you smile is a young autistic man called Michael McCreary. Known as ‘AspieComic’ he dedicates his life to making people laugh and for that he has my undying respect. He’s well worth a follow on Facebook and his posts, like the one below, are guaranteed to brighten your day.
Autistic people can also be the masters of inappropriate humour – think Ricky Gervais, South Park, Rick & Morty etc. – although obviously not all of them, because everyone finds different things funny, and all autistic people are individuals, as I explained in my post Why No-one Represents the Autism Spectrum. The bottom line is that if you look past the stereotype of autistic people being humourless, robotic oddities, you’ll find genuine warmth, compassion and an unusual, quirky way of looking at the world which can be downright hilarious once you learn to appreciate it.
Even something that’s caused pain in the past, and continues to create difficulties and struggles every day, can still be used in a positive way if you inject a bit of humour into it. For example, as well as being autistic my youngest son Aidan is dyslexic, and thanks to some unforgivable treatment at the hands of his primary school teachers, he lived for years with a deep sense of shame about it. I’d always done my best to help him see the funny side of things, but understandably this wasn’t something he was prepared to laugh about when he was young. In his own time though, he learned to stand a little straighter, and embrace who he is and the way his brain is made.
The turning point came one day at college when he stood in a room full of strangers and tried to dance to ‘YMCA’. As he struggled, and completely failed, to form the shapes of the ‘Y’, the ‘M’, the ‘C’ and the ‘A’ with his arms, he realised people were noticing, and instead of being embarrassed, he announced to no-one in particular ‘Yes, I’m dyslexic, now you can see why I failed GCSE English!’ Everyone fell about laughing, including Aidan, and as a result several of those strangers became his very good friends.
In the same way, my book, The Ringmasters Tale, is full of serious advice and resources, because I wanted it to be the book I wish someone had handed me when my eldest son was born and autism seemed like such a dark, impenetrable mystery. It’s also liberally sprinkled with humour though, because back then, when things seemed so completely, overwhelmingly negative, I could definitely have done with something to make me smile too.
It’s available from Amazon now in paperback and Kindle if you’d like a copy. I’ll leave you with an extract that perfectly describes pretty much every day in my house, and is, I’m quite sure, something lots of you can identify with.
A Day at the Circus
Child 1 (age 6) decides to dress himself for school. Full instructions have been given the previous evening, so am feeling confident of his success.
7:30am: Hear dreadful choking sounds coming from bedroom. Discover Child 1 strangling himself with school tie. On further investigation, realise my direction to ‘slide your tie up until you reach your top button’ have proved useless as his top button is in fact missing.
Hastily explain that reaching one’s neck is also an excellent time to stop tightening. #AlwaysCheckTheButtons
8am: Child 2 (age 3) has recently started returning from nursery each evening with dirt under his fingernails. Ask nursery staff why, and am told he plays in the same muddy spot outside every day, saving his place each night with a specific stone.
6pm: Collect Child 2 from nursery. Frazzled nursery teacher informs me Child 2 has in fact been digging escape tunnel under fence for some time, using stone as entrance marker once loose soil has been replaced.
Having finally completed tunnel, Child 2 has today led daring band of small children out onto pavement, getting three toddlers through fence before staff noticed anything was amiss.
Teacher assures me playground is now scheduled to be tarmacked.
Explain Child 2’s latest obsession is Chicken Run (film about group of militant hens constantly plotting escape from farmyard prison).
Conclusion: Child 2 may not have any speech yet, but has plenty of imagination, leadership and strategic planning skills. #ProudMummyMoment
To celebrate International Women’s Day I’m sharing an extract from my book The Ringmaster’s Tale which has a whole chapter full of advice and resources for girls on the autism spectrum…
Similarities and differences
The interesting thing about girls on the spectrum is how they can appear similar to, yet distinctly different from, both autistic boys and neurotypical girls, which is what makes them so fascinating, complicated and notoriously difficult to diagnose.
When it comes to boys…
In the same way autistic boys do, girls on the spectrum have challenges with processing sensory information, handling emotions, dealing with change and understanding social rules, but how they respond to these challenges will often be quite different. In addition to the usual five senses, girls will often seem to have a finely tuned ‘sixth sense’ that allows them to intuitively know things other people don’t.
Although girls are likely to ask endless questions about the world just as boys do, their questions will often focus on deeper issues than the mechanics of how the world works. Subjects such as animal abuse, the destruction of the natural world or even what happens after death can fascinate autistic girls because of their heightened sense of empathy, which gives them a deep connection with, and concern for, these types of issues.
They’ll usually enjoy collecting and categorising certain objects, something that’s very common in both genders, but whereas boys will arrange their favourite items in long straight lines, girls will often sort them into size, shape and colour order, making beautiful displays and becoming distressed if they’re changed in any way. Cuddly toys and stationery are both firm favourites with girls on the spectrum, but they’ll be organised and admired rather than being played with or used as they’re designed to be.
Autistic girls tend to be ahead of boys when it comes to communication skills, but may show some unusual traits such as singing rather than speaking or developing an intense interest in language, including writing stories and poetry or studying the rules of grammar. They can find it easier to stand up and address a group of people rather than having a one to one conversation, and often have a serious aversion to speaking on the phone, a trait they definitely share with a large number of autistic boys.
When it comes to girls…
Like neurotypical girls, they’ll often have an interest in fantasy fiction and can sometimes take things to the extreme and retreat into a complicated fantasy world filled with imaginary friends. They frequently have a deep love of nature and animals, particularly horses, which aren’t uncommon in girls, but it’s the intensity of their interests – bordering on obsession – that’s unusual rather than the interests themselves. They’re likely to become experts in the subjects that fascinate them, reading everything they can find and memorising large amounts of information about them just for fun. Autistic girls are often hyperlexic too: learning to read very early and enjoying books generally considered far too advanced for them to understand.
Many have quite remarkable creative talents and show a great flair for theatre, art or dance, which they’ll practice tirelessly until they’re happy with the results. Another area where girls on the spectrum can excel is in the STEM subjects (science, technology, engineering and maths) as many of them prefer ‘purposeful play’ where everything is categorised, ordered and investigated. Jigsaws, LEGO and gaming are all very popular pastimes too.
Having an interest in clothing is very common in girls, and those on the spectrum are no exception, but their interest can be expressed rather differently. They’ll either tend to be tomboys who’ll happily wear the same clothes day after day, being uninterested in fashion but still very particular about what they like and dislike, or they’ll be intensely feminine ‘princessy’ types who love to dress up in the latest styles and can’t bear getting dirty. Whichever is the case, they like their clothes to be a certain way (more often than not with all the tags removed!) and can become very distressed about any suggested changes.
Shyness is also something a lot of young girls experience, as is separation anxiety, but for autistic girls these feelings can be so powerful they become a full blown social phobia. On the other hand, some neurotypical girls have a tendency to be bossy, and again, in the case of autistic girls this can be exaggerated by their need to control things, often meaning they form better relationships with adults than children when they’re small, because adults are better at following the rules. This can lead to them being labelled a ‘teacher’s pet’ and make finding friends of their own age even more difficult.
Society tends to expect girls to be quieter, neater and better behaved than boys when they’re young and this can be a real struggle for girls on the spectrum who often have trouble with manual dexterity (doing up buttons or shoelaces) and bilateral coordination (learning dance moves or riding a bike). This can cause a lot of unnecessary stress for autistic girls, as they’re usually total perfectionists who can’t rest until they’ve completed every task flawlessly. As a result they may avoid trying new activities due to how much anxiety the fear of failure causes them, and can be diagnosed as having pathological demand avoidance (PDA) as a result.
Whether you’re male or female, autistic or neurotypical, the most important part of living a happy, productive life is learning to like, love and accept yourself for who you are. The world will be very quick to point out your supposed flaws (you’re too fat, too thin, too tall, too short, too loud, too quiet etc.) so having a good, strong understanding that in actual fact you are enough, just as you are, really is vital if you’re ever going to flourish.
Girls on the spectrum are notoriously hard on themselves and it can be heart-breaking to watch them pull themselves apart trying to be perfect, but there’s plenty you can do to help them feel better, so don’t despair. Telling them to ‘just stop caring about what other people think’ isn’t really going to help much because they’re simply not wired that way. Instead, point out the fact that caring about other people’s ideas and opinions is a wonderful quality to have but isn’t the same thing as letting other people’s attitudes rule your life, because everyone’s opinions and ideas matter including theirs. It may seem like a small point to make, but believe me, when an autistic girl has spent her life trying to be like everyone else, she can quickly lose sight of herself as an individual and see herself instead as some kind of inferior, faulty reflection of the other girls around her.
The Ringmaster’s Tale includes lots of practical advice about how to increase the self-esteem of girls on the spectrum and help them live more fulfilling and productive lives. You can buy it in paperback or on Kindle here: www.tinyurl.com/theringmasterstale
I know it might seem an unlikely comparison, but when it comes to being restricted by the label society has given you, there’s more common ground here than you might think.
Here’s an extract from my book The Ringmaster’s Tale discussing things in more detail:
Does a label really limit what someone can do?
The short answer to this one is: only if they believe it does.
Take the label of being female for example: Nowadays, women of all ages achieve incredible things. I see them succeed every day in the kind of extreme physical feats, academic breakthroughs and creative triumphs that would’ve been considered impossible for them not so long ago; impossible, I might add, for no other reason than the fact that they were born as women.
I remember a time when being labelled a woman was most definitely considered a restrictive thing. Women were expected to ‘understand their own limitations’ (whatever they were supposed to be) not challenge them, and to accept they would never be allowed to do some of the things men did because they simply weren’t capable, so there was no point even trying. Women were considered unable to vote, serve on a jury, work while pregnant and even get a credit card by themselves, but were they really incapable of doing these things? Of course not.
Those supposed limitations were just ideas that people associated with the word ‘woman’ at the time and really had very little to do with what women themselves were able to achieve.
These ideas had everything to do with what women were expected to achieve though, and as a result, society put so many restrictions on them that it was almost impossible for women to do anything other than what was expected of them: a potential self-fulfilling prophecy if ever there was one.
Yet women, who as it turned out weren’t actually incapable at all (hey, who knew?) did what women always do: they overcame the restrictions, they persevered through the prejudices and they succeeded. In fact, they exceeded every limitation society had placed on them and they fought, each in their own way, a slow and sometimes bitter struggle to change society’s ideas about what it meant to be female.
I appreciate that for many women across the globe the struggle is far from over, but things here in the UK have certainly changed a great deal since I was a child. I had a conversation with my daughter Isabelle a while ago about why an older female relative had never followed her dream of becoming a dancer. When I explained that during the 1950’s the majority of women were brought up to believe they couldn’t do anything else but be housewives and mothers, it literally stopped her in her tracks. She took a while to process what I’d said, then a huge grin spread across her face, followed by a fit of uncontrollable giggles. ‘But Mum,’ she said ‘that’s just so stupid! How could anyone believe that about themselves? Women can do anything!’ I smiled back at her and said ‘I know, right?’ leaving her to shake her head about just how ridiculous people were in the ‘olden days’ as she calls them. Being one of the golden oldies from the olden days myself of course, I can completely understand why so many women believed it.
As I look at today’s society I can see a lot of autistic people facing a similar struggle when it comes to being labelled. Just as society in general needed to acknowledge what women were capable of, women themselves also had to realise that however much negative and discouraging feedback they received from the world in general, they really were every bit as ingenious, creative and incredible as men. Not only that but because they were different, they brought new ideas to the table which, once given a chance, helped to create and shape a better future for everyone.
Different, not less
The ongoing battle for worldwide gender equality isn’t a pretty one. Nor has the process been fast or fair or easy, but you know what? It’s happening anyway. It’s happening because women aren’t just going to disappear if they’re being treated unfairly or their lives are difficult, since the bottom line is that they simply don’t have the option to all suddenly transform into men. Women are here, they’ve always been here and they always will be here, and despite society’s best efforts to keep them down in the past, they’ve proven time and time again that being different to men doesn’t mean they’re worth any less.
By the same token of course, men are also worth every bit as much as women, which is something that can often get overlooked nowadays, I feel. When it comes to this kind of thing there will always be extreme views on both sides, but true equality can never be achieved while either side is trying to dominate the other. Being equal isn’t about competing to see who’s the best, it’s about recognising and celebrating each other’s differences and being brave enough to wonder whether combining them might lead us in new and more positive directions.
Autistic people have been fighting a similar struggle for recognition and acceptance for as long as anyone can remember. They may not have been called autistic in the past but, just like women, autistic people have always been there, and in the future they always will be. They’re not suddenly going to transform into neurotypical people, which is a good thing of course, because the best way for them to gain the acceptance they deserve is to carry on being themselves and achieve things anyway, whether society expects them to or not. Autism really does bring some incredible gifts with it, but for them to be recognised as such, autistic people need to be diagnosed, otherwise it will always be assumed that it’s only neurotypical people who are out there living successful lives.
I would love to think that maybe in years to come my daughter will have a conversation with her own child about when she was a little girl and most autistic people accepted they couldn’t do what other people did because that’s what society told them, and that her child will giggle uncontrollably at how silly people used to be. Society’s attitudes won’t be changed overnight, but hopefully they will be changed, and I think more than anything they’ll be changed by ordinary people witnessing the small, everyday triumphs of those on the spectrum who are busy living happy, productive lives in their own unique ways.
Whether their children have autism or not, ever since humanity began, parents have swapped stories about their offspring. Each conversation would have its purpose, whether that was to raise the spirits or look for guidance, but make no mistake: the need to speak to others about our offspring is woven deep within our collective consciousness, and for very good reason.
One look at the internet, and particularly the blogosphere, and you’ll be in no doubt whatsoever that millions of parents of all races, religions and nationalities are happily sharing information about their children’s experiences (good, bad or somewhere in-between) and just as many other parents are benefitting from reading them: laughing, crying, sympathising and gaining both knowledge and confidence as a result. When it comes to parenting then, the Global Village dynamic is alive and well; unless of course your child is autistic.
You see in the autism community, when it comes to talking about your children, there’s a very negative undertone – one that tries to shame parents into silence and deny them the right to express their views – and sadly this mainly comes from a very small percentage of autistic adults.
While the very nature of autism guarantees that no two people will have the same experience of living with it, there are still a small but rather vocal minority who believe they have the right to speak for all autistic people just because they happen to be on the spectrum themselves.
Their opinion is that no parent should ever discuss their autistic child’s experiences, because to do so disempowers that child and removes their voice. They believe that while parents may think they’re doing something positive by spreading the word about autism, they are in fact abusing their children’s rights by discussing them in public. It probably won’t surprise you to hear that this isn’t an opinion I share.
Now, there’s no question there are a few parents who over-share when it comes to their children, but that applies across the board and has nothing to do with autism (or any additional needs) and everything to do with people having different boundaries. The vast majority of parents, however, simply wish to share their stories in the hope of finding common ground while living an often achingly lonely lifestyle, and that’s something we need to encourage for a whole variety of reasons.
I was born in 1966 and when I was growing up, having a child with any kind of difference was sadly considered an embarrassment, and something you just didn’t talk about. Many, many autistic people were locked away in asylums and the overriding attitude towards them was one of shame, yet even then there were autism parents who refused to play the game. Parents like the ones who founded the National Autistic Society, and those such as Bernard Rimland and Lorna Wing whose work changed the lives of untold millions of people. They refused to be silenced and instead spoke out about their children’s struggles, helping the world to understand what autism really is, and thank God they did, or where we would be today I dread to think.
Where we are today, of course, is in the unique position I described earlier: able to give help, and receive it too, from people all around the world, and I believe we have a responsibility to stand up too, each in our own small ways, and let our children’s stories be told. Even though each one will be different, there will always be the common thread of autism running through them, and by speaking up – by putting ourselves out there and pushing back against the small minority who disapprove – we’re helping people to understand the many different faces of autism, and accept it in all its diversity – something I talked about in my post Why No-one Represents the Autism Spectrum.
Some autistic people, like the inspirational Carly Fleischmann, eventually find their own voice and share their stories with the world, while others choose not to. There are those of course who don’t have a choice because they’re not able to communicate in that way, but that doesn’t mean they should be invisible like they were years ago, or that you can automatically assume they object to their parents discussing things openly. In some cases parents can ask their children how they feel about having their stories told, and in others they can’t, but either way, it’s got to be up to each individual parent to decide what’s best for their child and tell their story with respect and compassion.
Whether they choose to identify their child or use a pseudonym, and which details they choose to share, parents need to set the boundaries they feel are appropriate and simply keep on talking. The world has room for everyone’s voice to be heard, whether they’re autistic themselves or an autism parent, and we owe it to our children to speak up, speak out and make the world a more understanding, accepting place as a result.
As autism parents we’re already silenced enough, whether it’s by endless disapproving looks or an unsympathetic education system, and with more and more children being diagnosed, there’s never been more need to let new parents know what to expect and to let new grandparents know how much things have changed since their day.
Personally, I will carry on writing about my children (with their permission before anybody asks!) and I very much hope other parents will find the courage to do the same. Autistic people are exceptional, unique and endlessly fascinating and the vast majority of them welcome interaction from parents as well as others on the spectrum. When it comes to autistic children, far from being voiceless victims, when spoken about with love, they are in fact the heroes of their parents’ stories and long may that continue.
Today I’m sharing something from my book, The Ringmaster’s Tale, which is full of funny, sad, poignant and thought-provoking stories as well as lots of great advice about finding the positives when you’re living with autism.
This is a light-hearted look at some of the social situations autistic people can struggle with. I’m sure lots of people on the spectrum will recognise them – we certainly do them all in our house!
Top Ten Social Tips for People with Autism
Never, under any circumstances barring an absolute emergency, speak to anyone on the phone.
Always use the ‘Self Service’ check out at the supermarket to avoid unnecessary human interaction.
If a person has repeated themselves three times and you still haven’t understood them, just nod, give a small laugh and hope to God it wasn’t a question.
Make sure everyone understands that even though you won’t actually attend them, you’d still appreciate being invited to parties.
Resign yourself to the fact that if something amusing occurs to you while you’re alone in a public place, you will have no option but to laugh hysterically for no discernible reason, making you appear to be clinically insane.
Should the doorbell ring unexpectedly when you’re alone in the house, remain perfectly quiet and still until whoever’s there has left.
Spend at least 99% of your time planning witty conversations in your head and the remaining 1% forgetting everything you’d planned to say when the chance to use them arises.
When someone you know approaches you in the street, pretend you’re sending a text and haven’t noticed them, then walk quickly in the opposite direction.
Be continually prepared to have your day ruined by a random passing thought about something embarrassing you said or did several years ago.
Should you ever find yourself at a social gathering, always do your best to locate an animal of some sort and spend the evening petting it to avoid making small talk with other humans.
One of the main criteria for receiving an autism diagnosis is having ‘problems with verbal and non-verbal communication’. These problems (or complications as I prefer to call them) can take various forms, but without question one of the most widely recognised is the way autistic people seem to take everything literally. So, why does this happen?
Well, first it’s important to recognise that it doesn’t come from a lack of understanding of what’s being said to them, but from a difference in processing the information they’re taking in.
All language has two layers of meaning: what words actually mean (their literal meaning) and what we want them to mean (their figurative meaning) which is where the expression ‘figure of speech’ comes from (when someone says one thing but means something else).
Sometimes it’s easy to spot this kind of thing, for instance when someone says ‘it’s raining cats and dogs’ or ‘I laughed my head off’. Now, I say it’s easy to spot, but actually this kind of language is one of the things autistic people can have real difficulty making sense of.
Dyslexic people always ask ‘Why can’t words just be spelled the way they sound?’ while autistic people ask ‘Why can’t people just say what they mean?’ It’s one of the main reasons people on the spectrum struggle so much with social situations, but with a little understanding and patience, it’s easily resolved. The best way to deal with this is to remember that autistic people don’t automatically understand what’s implied, only what’s actually said.
Why? Well it all comes down to brain wiring.
All brains collect information from their environment and process it the best way they can in order to make sense of the world around them. The way a brain usually works is to create a filing system that groups similar objects and instructions together so it can respond to them in roughly the same way whenever it encounters them in the future.
For example: Four legs + fur + teeth + waggy tail = Dog. Once it’s been identified, anything representing a dog (a picture, sculpture, toy etc.) will be filed in the same group, making it easier to react to dogs in an appropriate way in the future.
Autistic brains, however, don’t automatically group anything together, and instead file everything as a separate piece of information with no apparent similarity to anything else. This results in two distinct character traits in autistic people when they’re young: either they appear to have no sense of danger whatsoever (because they can’t predict what might happen if they run across a road, for instance) or they have greatly heightened anxiety for the very same reason.
When it comes to following instructions, unless something is mentioned, an autistic brain won’t bring it into the equation, whatever that happens to be. See the image below for a classic example of perfect autistic thinking…
Rookie mistake. Did you mention moving the cat? Well, did you? No; moving the cat was implied, not actually said.
After countless scenarios just like this one, I taught my children to ask themselves ‘How likely is that?’ before following an instruction they thought seemed a bit unusual. On the whole it’s worked really well, although my husband still gets caught out by it every now and then.
Here’s an actual conversation from my house:
‘Nigel, did you ask Aidan to put the clean towels upstairs in the bathroom?’
‘Did you mention anything about putting them in the airing cupboard?’
‘Er…no, I don’t think so. Why?’
‘Oh, no reason…’
The other thing we’ve done is introduce the children to puns, metaphors and figures of speech by pointing out how funny they can be. There are some really good books available on Amazon, and working through them together can be a great bonding experience. Expect lots of misunderstandings and most likely a bit of frustration during the learning process, but do persevere because if they can get to grips with this kind of thing, you’ll find autistic people can turn out to be masters of dry humour.
The fact that people on the spectrum start off with such a disjointed filing system yet manage to not only function but in many cases achieve wonderful things, is just one of the many reasons I think they’re so incredible.
I talk about this in much more detail in my book, and also tell one of my favourite stories about literal thinking, which I’ll leave you with here:
When my son Dominic was sixteen his friend’s brother had open heart surgery and he asked how the operation had gone. His friend said ‘Well, they were in the theatre much longer than expected’ to which Dominic replied ‘Wow! They went to the theatre? He must have been feeling better.’ Without missing a beat, his friend said ‘Not that kind of theatre, Dom’ and they carried on with their conversation.
That it was an operating theatre was clearly implied by the fact an operation had just taken place, so Dominic’s friend didn’t bother to say the word ‘operating’, only the word ‘theatre’.
To Dominic’s mind though, a theatre is where you watch a play, and because he couldn’t add the right context to what he’d been told, it seemed perfectly logical (if rather surprising) that the lad must have suddenly gone on a night out.
Instead of making fun of Dominic for this, his friend realised he actually hadn’t explained himself clearly enough, and dealt with it as if it was the most natural thing in the world. Autism acceptance at its best!
It’s fair to say that we live in a world where the path to success is constantly changing. When I was a child in the 1970’s, success meant getting good grades at school, and as a young woman it meant getting a ‘proper’ job working in an office. These were seen as the quickest, most reliable routes to achieving ultimate success, which was defined as earning lots of money and being well-respected in the community.
Today you can become a celebrated YouTube millionaire by playing video games or putting on your make up. It’s beyond anything my generation could’ve imagined, but as different as it appears, scratch the surface and you’ll find the same dynamic at work: success is still generally defined as being popular and earning lots of money.
All decent parents want their children to succeed – to see them happy and fulfilled in the lives they’ve chosen – and before they’re born, we often assume our children will have the same desires to create roughly the same kind of life as everybody else. When a child is autistic however, their parents become aware, long before any diagnosis takes place, that sometimes this simply isn’t the case.
When autistic children don’t seem to be engaging with the world, their parents often worry that they’ll get left behind: that they’ll never find a job, or marry, or raise a family of their own, and when they then experience the perfectly understandable feelings of loss that follow, they’re overcome with a terrible sense of shame. They convince themselves that feeling this way means they don’t like or accept their child for who they are, and beat themselves up for being the worst kind of pushy parents.
Take it from me: there’s absolutely nothing wrong with feeling sad about the things your child might not be willing or able to do – things you’d imagined would make them happy – and in fact, working through this sadness and sense of bereavement is a really important step towards accepting your role as an autism parent.
People will tell you otherwise: they’ll tell you that you shouldn’t feel sad. Don’t believe them. These feelings are there for a reason and that reason isn’t because you’re a bad parent, it’s actually because you’re a good one and you want the best for your child, so it’s vital to grieve for the imagined future that’s lost before you can start working on the real future that’s ahead of you.
This is such an important issue that I’ve dedicated a whole chapter of my book to it, so if you’re struggling with this kind of thing, do check it out. In the meantime, I’ll do my best to explain what the secret to successfully parenting autistic children really means to me.
When it comes to autism parenting, if you truly want to succeed, you’re going to have to start by redefining what counts as ‘making progress’.
Over time you’ll need to let go of any conventional ideas you had about what success actually means, and learn to recognise your child’s own unique achievements, as and when they happen. It’s important to remember that building a future that works for them instead of one that conforms to everyone else’s standards isn’t about lowering your expectations, it’s about changing them to suit who your child is as an individual.
The secret then is to decide what success means for your child, then celebrate and encourage those things that inspire them, fill them with enthusiasm and make their eyes shine with wonder, because that’s how you’ll discover who they are and what makes them tick. Using these special interests as a starting point, set realistic goals for them and put everything you’ve got into achieving them together. Expect delays and setbacks, and don’t compare their progress to anyone else’s, just make a note of all the little steps they’re taking and remember to celebrate each and every one.
I have four children on the spectrum and my five ambitions for all of them were as follows:
Learn to speak
Learn to use a toilet
Learn to eat with a knife and fork
Learn to read and write
I realise these goals might be unrealistic for some of you, and for others they might seem impossibly simple, but in our case I felt they were a pretty good place to start. Once they’d mastered these I saw anything else as a bonus, and whenever possible, I let them take the lead in deciding the direction they wanted their lives to take.
My son Christopher, for example, had some very serious behavioural challenges when he was young, but he always seemed to find peace in drawing and building things with LEGO, long before he was able to speak or interact with other people. He was fascinated by architecture and took endless pictures of buildings wherever he went, so when he got older he decided to pursue his passion and took a degree in Architectural Engineering. A few years ago he graduated from Leeds University as a Master of Engineering with a First Class Honours degree, which is nothing short of miraculous when you consider he’s also seriously dyslexic.
Academic success against the odds isn’t the only thing we’ve celebrated though, so I’ve chosen some of my favourite moments of success to share with you here. Enjoy!
From a very early age my eldest son Christopher was a fantastic artist, but my second son Dominic had never shown any interest in drawing whatsoever.
When Dominic was four he had virtually no spoken language and we really had no idea whether or not he understood what was going on around him, let alone anything we said to him. One thing both brothers loved though was watching Power Rangers, so one day Christopher decided to make him a hat, and set about drawing each of the characters, cutting them out and attaching them to a headband for him.
When Dominic was given this gift, we genuinely thought he’d either scream and rip it up or try to eat it, but instead he picked up a piece of paper and carefully drew his own version of the Power Rangers, placed the paper on Christopher’s forehead and said ‘Kisfer’. Not only had he understood his brother’s kind gesture, but he’d also worked really hard to return it.
To say I was in a state of shock as I hurriedly stuck his drawing to a headband and took this picture would be an understatement.
To this day it remains a pivotal moment of success in my eyes, when Dominic was first able to show us his caring, compassionate nature, something which very much defines him as an adult.
By the time my daughter Isabelle was born, Christopher was sixteen. He’d always had the most appalling problems with sleep – far worse than his two younger brothers – and as a baby I’d spend hours comforting him using every technique I’d ever heard of, none of which seemed to have the slightest effect on him: he was fourteen before he eventually slept through the night.
Sadly, Isabelle’s sleep disorder was every bit as ferocious as her eldest brother’s, and when she arrived, the whole family was soon back in the familiar grip of severe sleep deprivation.
This particular example of success came at 3 am one morning, when I stumbled towards Isabelle’s room to find that Christopher had got there first. He was cradling his sister in his arms and making a very distinctive noise known as ‘loud shushing’ to calm her down. It was something I’d done to him many times as a baby and toddler, but I had no idea he’d remembered it.
‘I always used to like this, so I thought she might like it too’ he said, and in that moment, seeing this display of compassion towards his tiny, helpless sister, I realised that no act of kindness is ever wasted, whether you realise it at the time or not.
Like many autistic people, my youngest son Aidan has terrible exposure anxiety. He’s always been so self-conscious that even at three years old he’d curl into a ball and smash himself in the head when his nursery school put on a stage production for the parents. He found being looked at utterly overwhelming, so when he announced at sixteen that he was going to study Performing Arts and become an actor, I was taken aback to say the least.
It’s not been easy, but he’s worked tirelessly to overcome his fears, and this photo of him was taken after he gave a superb performance as Mr Myers, the teacher from Fame, at a well-respected theatre in Sussex. Several people thought he was a professional actor, and that surely counts as a success for any eighteen year old lad taking to the stage for the first time.
Incidentally, he’d spent three months growing that moustache for the part, and when I mentioned he could’ve worn a fake one instead, he said with disgust ‘And what kind of dedication to the role would that show, Mum?’
Who am I to argue with commitment like that?
Earlier this year, Dominic graduated from Cardiff University with a degree in Law and Politics. Having been told by several specialists that he was the most profoundly autistic child they’d ever seen and would never make any progress, I definitely had my concerns about him being so far away from home.
By the time this picture was taken, not only had he successfully lived an independent life for three years, he’d also made some wonderful friends and got engaged to a beautiful girl who thinks the world of him. I was, without question, the proudest (and most emotional) mother on campus that day; but Dominic’s successes weren’t the only ones I was celebrating.
One of the things Isabelle struggles with most is sensory processing disorder, and as a result her choice of clothes is very restricted. She wears things that are comfortable, stretchy, soft and most importantly familiar, meaning she lives in a variety of grotty old t-shirts, leggings and trainers, all of which have seen better days.
When Christopher’s graduation was approaching a few years earlier, no amount of reasoning could persuade her that it might not be appropriate to wear these outfits to the ceremony. After some serious meltdowns I was on the verge of giving up, but the turning point came when I explained to her the reason why we dress up on special occasions. I told her we make an extra effort with our clothes to show the person we’re celebrating with that we appreciate them and everything they’ve achieved. She thought about this for a while, and decided it was worth being uncomfortable for a few hours to show her support for Christopher.
For Dominic’s graduation she put on a dress without complaint, and even agreed to wear one with lace on the shoulders, to show just how proud of him she was. On both occasions, her love for her brothers overcame her aversion to wearing a dress, and that’s got to be a success by anyone’s standards.
In conclusion then, success isn’t just about your child hitting the major milestones, although no-one should ever make you feel guilty for celebrating them if they do. It’s also about the thousands of tiny moments of undiluted joy when your child surprises you, and more importantly, themselves; the small steps forward that make up the journey of life, whichever path it takes.
As I say in my book: “It’s vitally important to remember that achieving their potential is about so much more than gaining academic or financial success. There are countless ways to live a fulfilling life, and endless possibilities to be explored and enjoyed along the way, so above all else, always encourage your child to be happy and fulfilled in their own exceptional way.”
‘Tis the season for sparkly decorations and festive music in shops; for school nativity plays, visits to relatives and the excitement of opening presents on Christmas morning.
While for most children these things bring a sense of anticipation, magic and wonder, for children on the spectrum they can just as easily trigger confusion, sensory overload and full-blown meltdowns.
But fear not, autism parents, for I bring tidings of comfort and joy! Well, okay, I bring my top ten tips for an autism-friendly Christmas, but I’m sure they’ll bring a bit of comfort and spread a bit of joy in their own way, so it’s basically the same thing.
While I appreciate these tips won’t work for everyone, I’m hoping they’ll give you all some ideas and inspiration to make your holiday season go a bit more smoothly, so without further ado, here they are…
1. Be good to yourself
I’m not suggesting you start taking long baths or even put your feet up once in a while – I have four children on the spectrum so I’m perfectly aware this isn’t an option, particularly during the holidays.
What I’m talking about here is the importance of understanding how it’s perfectly okay to feel upset, disappointed, frustrated and sad when you think about all the traditional Christmassy things you’d like to do but can’t because your child has autism.
Lots of parents I’ve spoken to beat themselves up about feeling this way – as if they’re somehow betraying their autistic child and wishing they were someone they’re not – but that’s not what’s going on here at all. The truth is that it’s completely reasonable to expect that when you have a child, they’ll understand what Christmas is all about, know who Santa Claus is, enjoy opening piles of presents on Christmas morning and eat Christmas dinner with the rest of the family, so feeling a sense of loss when these things don’t happen is absolutely normal.
Far from being a sign that you don’t like or accept your child as they are, it’s more a case of wishing your child could share the joy that other people do at this time of year, and that just shows how much you love them and care about their happiness, so please remember to cut yourself some slack over this and allow yourself to feel down sometimes if you need to.
On a positive note, there are now more festive traditions that autistic children (and adults) can join in with than ever before. When my boys were young there was no chance of taking them to the pantomime or visiting Father Christmas at the shopping centre, but thanks to an increasing number of relaxed performances and sensory-friendly grottos, all that is changing and autistic people are now being accommodated more than I could ever have imagined all those years ago.
2. Explain, explain, explain
However you celebrate Christmas, or even if you don’t celebrate it at all, your child is bound to see a lot of Christian references when they’re out and about. From choirs singing carols to endless images of a baby in a manger, the sudden appearance of Christmas symbolism everywhere can be very confusing if you’re not sure what’s going on.
I’d suggest investing in a simple picture book about the nativity and keeping your explanation about why we celebrate on December 25th very straightforward. Something along the lines of ‘Jesus said we should all love one another, so lots of people like him and celebrate his birthday on that day’ keeps religion out of it if you’re not that way inclined, while still explaining the basics.
Another thing worth talking about is why we have a Christmas tree inside the house and why we put lights on it. When you think about it, suddenly finding a brightly-lit tree standing in your front room must seem quite bizarre if you don’t know why it’s there or where it’s come from. There are lots of articles explaining where the tradition started and what it represents, so if you’d like to find out more, Wikipedia’s article is a pretty good place to start.
If you’re religious there’s obviously a lot more to it, but if not, keep things simple: ‘Fir trees are green all year round so they remind us that even in the winter things are still alive and growing, and lights remind us that although it can get very dark at this time of year, the sun will always rise in the morning to light our way.’
3. Spread the joy
Christmas advertising seems to start earlier every year, but as a general rule, things still go into overdrive around the start of December. There’s no right time to start preparing your child though, so it’s worth checking with their school to find out when their celebrations begin, and use that as a rough guide.
Rather than making your child wait for Christmas day, it might be a good idea to spread the joy by making it Christmas week, Christmas fortnight, or even Christmas month in your house, and leaving them a present under the tree every morning. Chances are that if they get all their gifts at once they’re going to be overwhelmed and nothing will get played with anyway, whereas having one a day means they’ll have time to explore and enjoy them all at their own pace.
Make sure your child understands that once Christmas is over they won’t keep getting a present every day though. You could use an advent calendar to help illustrate this if you’re doing it over the course of December, or perhaps take the tree down to show that things have gone back to normal. However you do it, please give them plenty of warning that the gifts are going to stop, otherwise they could become very upset. Visual timetables and calendars are definitely your friends here.
4. Decorate at your own pace
While my children love to put up yards of tinsel, fairy lights and anything else they can distribute round the house or cram onto the tree, for lots of autistic people this sudden burst of colour and light can cause a serious amount of sensory overload.
If this is a challenge for you then decorate the house as slowly as you need to. Displaying Christmas cards as they arrive is a great way to start celebrating gradually, and using paperchains instead of tinsel can really reduce the amount of sparkling light your child has to process.
When it comes to the tree, consider making the fairy lights static rather than twinkly or alternatively don’t have lights at all, and instead make your own decorations that you can add to year after year.
5. Get to know each other
Put together a photo album of relatives you’ll be meeting over Christmas and include a bit of information about what their names are and how they’re related to you.
Make it clear to everyone that your child might not want to be hugged or might hug a bit too much. Explain why they won’t eat the same food as everybody else – that they’re not just being picky – and why they can’t dress up in scratchy new clothes for the day. Most importantly make sure no-one scolds your child for their behaviour, and let your relatives know that if they’ve got any questions, you’d be only too happy to answer them – preferably out of your child’s earshot. Just for the record: if you can get through the holidays without anyone giving you unwanted parenting advice then you’re doing better than I ever have.
6. Remember your survival strategies
Walking into a house full of tipsy relatives can be terrifying if you’re on the spectrum (and even if you’re not) so when you’re visiting, it’s best to arrive before everyone else if you can. Talk about ‘safe zones’ with your child and explain how they can always retreat somewhere if things get too much, even if it just means sitting outside in your car for a while.
Take a pack of familiar things with you too – trust me, doing this can be a real life-saver. I list a full ‘Survival Kit for Days Out’ in my book which includes, among other things, a visual timetable, your child’s preferred foods, their own cutlery and crockery, fidgets, a small weighted blanket, a phone or tablet (with charger and spare batteries), sunglasses, ear defenders or an iPod with ear buds, and a hoodie or hooded coat/cardigan to create a kind of portable safe space.
It’s also a good idea to record your contact details for them to carry in some way in case they wander off, and take a basic first aid kit for the inevitable bumps and bruises.
Last but not least: take some bribes! Be prepared with some of their favourite things to offer as rewards for good behaviour or in the case of an emergency.
7. Practice some give and take
Autistic people can be incredibly blunt if they don’t like a present and this can be very hurtful to relatives who don’t know them well. To minimise the risk of this happening, ask people to buy your child sensory toys if possible. There’s no guarantee they’ll buy the right ones of course, so preparation is key when it comes to the giving and receiving of gifts.
The idea that the thought behind a gift is more important than the gift itself can be a really tricky thing for an autistic person to grasp, so if this is too abstract for them, just focus on something else.
Social stories can be very useful for explaining how it feels when your gift is rejected, as well as learning why saying thank you and being polite are so important. If your child struggles with this, it might be a good idea to explain it by pointing out that just as stimming makes them happy, but seems confusing to other people, manners make other people happy even if they’re a bit difficult to understand.
8. Keep a sense of humour
Remember to laugh about the funny moments that will inevitably happen when your child has autism. It’s a great way to relieve tension and it doesn’t mean you’re laughing at them, just that you’re enjoying and celebrating their uniqueness. For instance, forget about them eating Christmas dinner or dressing up to be in the annual family photo, and instead accept with a smile that when your relatives share their pictures on Facebook, your child will be the one holding a McDonald’s Happy Meal while dressed as Batman.
9. Practice painless unwrapping
If your child hates surprises, opening presents can be a real challenge. To help overcome this you could put a picture on the outside of their gifts showing them what’s inside, or even leave them unwrapped. Whatever you do, make sure everything has been removed from its packaging, because wrestling toys from their plastic and cardboard prisons can be virtually impossible even if you don’t have manual dexterity problems. Also, if anything needs batteries, make absolutely sure they’re already in place and every item is in good working order.
Lastly, if you have decided to give your child everything on Christmas morning, don’t insist they open all their presents at once. If they decide to open one a week and Christmas ends up lasting ‘til July, who cares? Like I said before: spread the joy, people!
10. Remember what Christmas is really about
In the end, the most important part of making your Christmas autism-friendly is to remember what it’s really about: sharing love and being grateful for what you’ve got; and the easiest way to do that is to simply accept your child – and yourself – exactly as you are. Recognise that the way you celebrate will be as unique as everything else you do, so not everyone will understand it, but that doesn’t make your experiences any less valuable.
Whatever happens, always remember that a life with autism, however extraordinary, is very much a life worth celebrating, and that applies not just at Christmas, but all year round.
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 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 story of why the inventor of Pokemon credits his autism with helping him create the whole phenomenon.
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.
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!
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 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.
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 lots of different 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.
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?
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.
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!