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Autism Awareness Month, Autism All Stars, aspergers, autism, disability, diversity, parenting, special needs, autism awareness, autism acceptance,

Here we are in April, and as all autism advocates know, that makes it World Autism Month. You’ll hear more about autistic people 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 autism 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 to help 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 and its related conditions really does matter, and whether you use the term ‘awareness’, ‘acceptance’, ‘inclusion’ or ‘celebration’ to describe it, if you talk about life on the autism 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.

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Great advice for enjoying Christmas with your autistic loved ones, from Amazon Number One Bestselling author Helen Wallace-Iles.

‘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 autistic children 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 kind of similar.

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 autistic children so I’m definitely 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 is autistic.

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. Focus on what’s staying the same

Although it’s very tempting to focus solely on what’s going to be different at Christmas – and preparing your child for the things that are going to change is hugely important – always remember to focus on everything that’s staying the same.

Remind them that even though their family members might be wearing unusual or brightly coloured clothes, they’re still the same people on the inside, and still love them just as much.
Explaining why people dress up in sparkly dresses and silly jumpers at Christmas will help a lot. Depending on your child’s level of curiosity (and if they’re anything like my children they’ll want to know EVERYTHING) you can explain the origins of the tradition, when people dressed this way to bring light and colour to what was seen as an overwhelmingly dark, grey season; or you can stick to something simpler and tell them people like to dress up because they’re happy that their family members are getting together and the silly jumpers make them laugh.

If you can, get them to play the ‘What’s Staying the Same?’ game, and start with the basics like ‘the sky will still be blue’ or ‘I will still be a human’. Explain how funny it would be if everything had to change just because it was Christmas, and they somehow ended up being a dog! Anything that gets them laughing about the situation will ease the tension no end.
If they’re visual learners, draw or print out pictures of everything you’ve discussed and make a collage they can use to help get the changes into perspective.
I’ve met many parents over the years who feel it’s best to ignore changes and not make a fuss about them, thinking their child will just take it in their stride if they play things down, but that’s definitely not the route I’d take.

Any unexpected changes will disrupt an autistic person’s routine and can make them feel wildly out of control, so reassuring them in whichever way works best for them is vital for their peace of mind. Using social stories and visual timetables to explain things can really help with this process too.

3. 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 25^th 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.’

4. 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.

5. 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 paper-chains 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.

6. 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, they have a genuine physiological reason why they can’t do it – and why they’re unlikely to 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.

7. 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 the 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 earbuds, 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.

8. 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.

9. Keep a sense of humour

Remember to laugh about the funny moments that will inevitably happen when your child is autistic. 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.

10. 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!

And finally…

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 an autistic life, however extraordinary, is very much a life worth celebrating, and that applies not just at Christmas, but all year round.

Four years ago I shared a story on Facebook about my youngest son Aidan, on the day of his college exam results. You can read the original post here: FACEBOOK POST but to recap, Aidan has autism, ADHD, Dyslexia and Tourette’s syndrome, all of which were undiagnosed for years, so he had a dreadful time at primary school and when he started secondary school he had a reading age of five and an absolutely shattered sense of self-confidence.
Naturally I was told he would never amount to anything; that he was naughty and lazy and that he was totally unsuitable for an academic environment, opinions which were, without exception, completely wrong.

Thanks to some outstanding support from his secondary school and college SEN teams and lots of hard work on his part, these are the results he achieved that day: Performing Arts: A*, Politics: B and Film Studies: B! He was then on his way to university to study Film Production, and this is my promised update about his university journey.

As much as I’d love this to be a post about how he sailed through it all, it is, in fact, a very different story indeed.

Aidan studied his chosen subject at Portsmouth and got off to a flying start. He joined several groups and societies, made some great friends, stood up for his beliefs in the Political Union, and even tried his hand at stand-up comedy – all things I could only have dreamed he’d do a few years ago.

Everything was going incredibly well, when out of the blue he was struck down with a case of ulcerative colitis which was so severe that the doctors said it was ‘literally as bad as it gets’. There was no warning at all, so we were extremely shocked when he came home for the holidays looking like a shell of his former self after having suffered the symptoms in silence for a whole term.

He was rushed to hospital after my GP took me aside and told me he was so ill that he wouldn’t last another week, and so began the most dreadful years of his life, as he became progressively more house bound, suffered excruciating pain, and spent weeks in hospital, where he couldn’t even retain a sip of water as the condition flared over and over again, taking a devastating toll on his body.

As if this wasn’t enough to deal with, lockdown then happened, and despite our very best efforts, Aidan went down with Covid 19 at a time before there was any vaccine, and we almost lost him.
It was utterly terrifying, but after many weeks in hospital, years on drugs that didn’t work, and one very heated discussion between myself and his specialist, where I explained the terrible effect this situation was having on Aidan’s mental health (plus the fact that I wasn’t leaving his office unless he agreed to try a different drug) we finally found something that worked, and could tentatively start looking towards his future again.

Despite everything he’d been going through, Aidan had kept up with his studies as best he could from home, but inevitably he missed the majority of his second year. He had the option of giving up at that point and no-one would have blamed him, but in true Aidan style he continued on, steadily repeating his missed courses.

With another year added to his studies when he returned to university, the friends he’d made at the start had already moved on, so he had to work from scratch to build new friendships, one of the things he struggled with the most when he was younger. He took it all in his stride though, and made some wonderful friends, attending socials and joining even more clubs than before.

He worked really hard and did everything from playing an extra on set in his friends’ films to being an assistant cameraman, a boom mic operator and even a director. He was so successful that the film he worked on as his main project was chosen for a special screening at a cinema in London, something which once again made us all very proud.

Eventually his degree course was complete, and on the hottest day of the year we gathered at Portsmouth Guildhall to see him receive his degree.

Aidan’s eldest brother Chris was on his honeymoon at the time, and was really upset that he’d missed the ceremony, so his dad stood in for him in the group shot with a mask of his face on a stick – we called him ‘Cardboard Chris’!

Aidan scored a high 2:2 with honours, which is a superb result, and really shows what he’s made of.
Naturally I was extremely emotional, to the point where the first time I saw him in his robes, which happened to be in an underground car park, I insisted on standing in front of oncoming traffic to have a picture taken, so I could always remember that feeling of unadulterated pride and awe at what he’d achieved against so very many odds.

During his years at university Aidan discovered a love of script writing which is something he’s now working towards as a career, with the same down to earth approach as always.
Meanwhile, I’ve finally been able to hang all three of my sons’ degree portraits in the hallway, which was another very proud moment for me after all the years of uncertainty.
You can read about each of them, and the struggles they’ve all faced and overcome, in my Facebook album ‘Nev er Tell Me the Odds‘.

***Degree Portraits of All Three of my Sons***

Please join me in congratulating my incredible, unstoppable son, written off at such an early age, yet still a shining example to us all. Aidan is a real life example of the fact that no matter what kind of hand life deals you, all that really matters in the end is the way you play it.

As a thank you for all your support over the last year, I’m giving away THREE FREE COPIES of my book, The Ringmaster’s Tale.

Described as ‘a gift to parents’ and ‘the best book on autism there is’, it’s full of advice, information and lots of personal stories that give you a ringside seat to what life on the spectrum is really like.

It’s got some fantastic feedback already, which you can read here:

RINGMASTER’S TALE FEEDBACK

To be in with a chance of winning a copy, simply

LIKE MY FACEBOOK PAGE & SHARE THIS POST

and I’ll draw the winners on the 22^nd, so you’ll have your copy in time for Christmas.

Good luck!

If you’d like to buy a copy, full details of how to do it can be found here:

HOW TO BUY THE RINGMASTERS TALE

Today I have some wonderful (and very romantic) news to lift everyone’s spirits – my eldest son Chris proposed to his girlfriend Georgie, and she said ‘yes’!

Georgie is a huge fan of Harry Potter, so during a recent trip across Scotland they booked a ride on the Hogwarts Express.

They drank champagne, ate vegan chocolate frogs and wore some very appropriate masks.

Next day they visited the Glenfinnan Viaduct, one of the actual locations used in the films. Chris chose the perfect moment to go down on one knee, and popped the question just as the Hogwarts Express went past and blew its whistle.

You can see how magical it was (and how Georgie almost fell over backwards with shock) by watching the video below…

As many of you know, Chris is autistic, has dyspraxia and dyslexia, and was born almost 30 years ago at a time when very little was understood about these conditions.
I was forced to listen to endless dire predictions from ‘friends’, family and health professionals about how he lacked intelligence and would never achieve anything in life, and I watched him struggle with bullying and self-doubt when he was younger as a result. Here he is though, living an amazing life and proving every one of them completely wrong.

He’s worked incredibly hard and now has a Masters degree from Leeds university, a fantastic job in central London and a wonderful partner to share his life with.

Obviously I’m writing about this because I’m absolutely thrilled for them both, but I’m also sharing it because I realise that a lot of people still believe, quite wrongly, that autistic people can never have successful, loving relationships.

Only other parents of autistic children will truly understand just how much it’s taken for Chris to get where he is today, but I’m sure everyone can appreciate that he’s a genuine example of why, no matter what anyone tells you, the only real future is the one you make for yourself.

Today is Mother’s Day here in the UK, so I’m sending you a heartfelt message from me: one mother who decided that since it was her day, she’d do exactly what she wanted, so she sat down and cried.
Times are tough, but as always, we mothers are so much tougher. Feel free to share this with anyone who needs to remember that no matter what, a mother’s love will always remain completely and utterly unconquerable.

Mother’s Day 2020

Today the mothers cried.

They cried for the beauty of the words and pictures their children sent: for the cards, the photos, the texts; the spiky letters and wobbly drawings, offered on crumpled, sticky scraps of paper. Words from young hearts declaring their love; pictures of favourite things to make them smile.

But today the mothers cried.

They cried as the pain and fear that tore and splintered their hearts begged them to hold their loved ones close like never before, yet cautioned them to hold back for fear of spreading disease.

And the mothers, as is their way, cried too for those they would never meet, but whose pain they felt as intensely as if it were their own. They cried for the mothers whose children were far away; for those whose families were shattered, beyond all hope and expectation of repair.

The mothers cried for the broken world their children would inherit. They cried for the confusion they saw in their children’s eyes, felt in their children’s hearts and heard in their children’s words as they watched them prepare to face the tumultuous, uncharted waters of a terrifying tomorrow they never wanted or deserved.

And then the mothers dried their tears, and they too began to think of tomorrow.

Because tomorrow the sun will rise and the mothers will stand strong, and teach their children courage, even though they’re still afraid. They’ll smile and laugh and speak words of reassurance, though their voices may shake and their lips tremble; offer encouragement and comfort, and plant the seeds of a different future, full of endless, wonderful tomorrows they could never dare to imagine today. And the mothers will teach their children patience, and explain how to nourish those seeds with kindness and hope and goodwill, and to appreciate their beauty and uniqueness when eventually they flower.

And the mothers will do what mothers have always done: they will simply love their children. An easy, uncomplicated love, yet one more ferocious than any illness, more expansive than any distance, and more devastatingly powerful than anything , anything at all, life could ever throw at them.

And their children – those precious fragments of light, chaos and stardust they share so selflessly with the world – will one day teach children of their own to look for the light when things seem darkest.

And the mothers will smile, as they hear their own wise words come echoing across the years, and remember the desperate days when they were spoken.

Then the mothers will cry again; this time with joy.

Helen Wallace-Iles

If you’re suffering today or you know anyone else who is, please follow this link where for a limited time you can download any of my popular therapy programmes for just £1 each: THERAPY PROGRAMMES
All profits go directly to Autism All Stars.

Hi Everyone,
Sorry we’ve been so quiet on here recently but things have been pretty chaotic behind the scenes.

As you know, we’re a charity who relies solely on the goodwill of our supporters for our funding, the majority of which comes through our public events, so things are pretty tight financially for us at the moment.
As always though, we’re determined to keep shining through these dark times and continue spreading our message of autism acceptance and inclusion, just in ‘non-contact’ ways for the foreseeable future.

All clubs and public events have therefore had to be postponed until the coronavirus pandemic is under control, but we’ll be running regular online raffles, selling more goods through our Ebay store and opening our own online shop selling exclusively designed autism-related products including t-shirts and note books to help raise funds as well as everyone’s spirits.

We also have plans to provide practical help and emotional support to autistic people during the current health crisis, so anything you can donate towards this goal, no matter how small, would have a huge impact.

I very much hope we can rely on your support through our various online options, including The Giving Machine, Amazon Smile and of course Facebook Fundraisers. You can raise funds for us without having to leave the house or spend anything extra in several different ways, and can see all your choices here: FUNDRAISE FOR US

It would also be incredibly helpful if you could spread the word about us on social media – it’s a vital source of communication and advice at the moment so it’s more important than ever.
Autistic people and their loved ones need all the support they can get at this awful time, so please make them aware of our work by following this link:
SPREAD THE WORD ABOUT AUTISM ALL STARS

I’ll also be looking for ways our supporters can help us by using their talents and skills, so if you have any ideas about how you could contribute, now is the time to let me know about them.

Wishing you all a safe, calm and peaceful path through all the chaos 💖

Keep shining, Lovely All Stars ✨🌟✨

Best wishes,

Helen and the Team xx

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 desperately trying to communicate her feelings to you, or even 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 often see, hear, taste, touch, smell and feel things far more acutely than other people, 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 that’s been building inside them for a while but 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’, ‘masking’ 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 autistic girls (and on being one yourself, of course).

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.

Regardless of their age or ability, it’s my belief that ‘Home’ should be every child’s soft place to fall in the world: somewhere they can lower their barriers, remove their masks and know for certain they’ll be accepted exactly as they are.
If your child is on the autism spectrum, this is doubly important. It can also be doubly difficult if you have no previous experience of this style of parenting.

One of the most common challenges you’re likely to face is getting your child to go back to school after the long summer break. Assuming ‘Home’ really is their favourite safe space, can we blame them for being reluctant to leave it after six weeks away from the noise, confusion, bright lights and overwhelming social expectations of the schoolroom? Not at all; but if this is the education path you’ve chosen for your child, they’ll have to learn to manage it somehow, and the good news is that there’s lots you can do to help.

The complex and often baffling needs of each individual autistic child could never be explained in a single post (or in a thousand posts, for what it’s worth) so these strategies might need a bit of adapting, but the tips listed here will definitely give you a framework to use that’ll help ease your child back into school after the holidays. Whatever your child’s age or ability, the basics are the same: establish a routine and do a whole lot of preparation.

What’s staying the same?

When you’ve got any kind of adjustment coming up, it’s very tempting to focus solely on what’s going to be different. Preparing your child for the things that are about to change is hugely important, but always remember to focus on just how much will be staying the same.
Remind them that their family will still be there at the start and end of every day, that they can still enjoy their favourite pastimes, and that the wider world outside school will carry on as usual.
If you can, engage them in a game of ‘What’s Staying the Same?’ and start with the basics like ‘the sky will still be blue’ or ‘my eyes will still be brown’. Point out how funny it would be if their eyes changed colour every time they changed classes and encourage them to come up with some outrageous suggestions for eye colours like ‘pink polka dots’. Anything that gets them laughing about the situation will ease the tension no end.
If they’re visual learners, draw or print out pictures of everything you’ve discussed and make a collage they can use to help get the changes into perspective.
I’ve met many parents over the years who feel it’s best to ignore changes and not make a fuss about them, thinking their child will just take it in their stride if they play things down, but that’s definitely not the route I’d take.
Any period of transition will disrupt an autistic person’s routine and can make them feel wildly out of control, so reassuring them in whichever way works best for them is vital for their peace of mind. Using social stories and visual timetables to explain any changes to their routine can really help with this process too.

How do we prepare for their first day?

Autistic people are very sensitive to their environments, so they often need a bit more time to process changes.
Gradually reintroduce their school sleep routine (prepare to be unpopular if you have to move their bedtime forward or wake them up earlier). Start dropping school-related topics into your conversations like ‘What would you like in your packed lunch when you go back to school?’ and if you can, drive past the school and talk about what happens during the school run.
Inevitably as the time draws nearer, you’ll have to face something all parents dread: ‘back to school’ shopping, and my advice here would be to do as much of it online as you can.
My children don’t cope well with department stores and crowded shopping centres, which is much less of a problem than it was years ago, as so many organisations offer free delivery and returns nowadays.
Once you’ve survived getting them into their new uniform, encourage them to wear their school shoes around the house so they can get used to the different sensory input they’ll experience. Remove all tags if these are an issue (these are a HUGE issue in my house), open and close any buttons until they stop being stiff, and wash everything using plenty of fabric softener to stop their clothes being scratchy or ‘smelling wrong’. If their sensory issues are very severe, you could use specialist clothing from various retailers including Marks & Spencer – their Easy Dressing Range is very good.
If possible, go and see their new classroom, meet their new teacher, take a tour round their new school, college or university and explain your child’s specific needs to the relevant staff. Push through any feelings of embarrassment about being ‘that’ parent, and focus instead on building a solid working relationship with their teachers where you team up and provide the individual support your child needs in order to thrive.

Which suggestions should I make?

Since all autistic people are different, there are endless suggestions you can make that will help their school day run more smoothly; here are some of my favourites:

1. Do your best to arrange a buddy system and/or a quiet place they can use at break times. Filling unstructured time can be very difficult when you’re on the spectrum.

2. Give your child a notebook and encourage them to write down anything that bothers them during the day – this can be a great way to reduce their anxiety levels. Make sure their teacher understands what they’re doing and that the book is private, then if possible, read through it together in the evenings to give you ideas about what to work on next.

3. Make sure your child knows who to speak to if they’re lost or if something unexpected happens like a fire drill. Explain how your child responds to stress – perhaps they ask endless questions, or maybe they shut down and say nothing at all – so their teacher is able to spot the signs and diffuse the situation before it gets out of hand.

4. Help your child’s teachers make their classroom environment more autism-friendly. There are hundreds of suggestions for making this happen here: Autism-Friendly Classroom Checklist

5. Organise somewhere your child can go and chill out if they get overwhelmed. Many schools have great pastoral care nowadays and offer quiet rooms for children to use if they’re in distress. If the room doesn’t have any sensory toys, bring in your own and leave a bagful in there for emergencies.

What about after school?

All parents know their children need to let off steam when they come out of school, but for autistic children this time of calming down and processing the day’s experiences is absolutely vital.
To make the transition from school to home a bit easier, start the cool-down process in the car or on the bus: take snacks and drinks, fidget toys or handheld games. Resist the urge to push them for details about their day, because their brain will be overloaded and exhausted from processing all the new information. Instead, let them unwind in their own way, whether that be watching TV, playing video games, reading quietly or stripping off their clothes, shouting, bouncing and running around at top speed.
The following image (which was only the beginning of the nightly trail of discarded ties, socks, shirts etc.) will probably be familiar to many of you…

Clues discovered by the front door would indicate that Aidan
came home from school and promptly evaporated.

The bottom line here is that different children have different needs when it comes to unwinding, so whatever they prefer to do, give them the space to get on with it. This isn’t giving in to your child, spoiling them or letting them get their own way, it’s understanding and accepting them for who they are. They can’t ‘just deal with it’ like most children do, and by letting them be themselves for a while, you’ll notice their anxiety levels reduce significantly.
If you need some extra help handling stress, I can definitely recommend using a relaxation programme called Increasing Inner Calm. It’s helped thousands of families including my own, and focuses on being more relaxed, confident and calm under pressure, as well as improving the quality of your sleep. Anyone can use it, whether they’re autistic or not, and it’s great to fall asleep to at night. It also includes a trigger you can use afterwards to instantly reduce your stress levels – something I’ve found absolutely invaluable on the school run.

No amount of advice will make every school day plain sailing (I have four children on the spectrum so I’m the last person who’d suggest something like that) but hopefully this post has given you some ideas you can use. Let me know how you get on, and if you have any tips of your own, I’d love to hear them. Good luck, and remember to keep your sense of humour!

Today I’m shining a light on a truly inspirational club, aptly named ‘Inspiration Drum Line’. It’s a drumming group for children with additional needs, founded in 2016 by the unstoppable Nev Latimer, his wife Iris and their son Luke. They’re based at Cedars Academy in Gateshead, Tyne and Wear – a specialist school for pupils aged 3 to 19 years with a wide range of complex needs including autism, ADHD and Down syndrome.

This is their story…

Where it all began…

Nev first started drumming in the local jazz bands way back in the 70’s and 80’s; they were groups of youngsters who marched round nearby villages playing music during the summer, competing in carnivals and entering competitions. He then went on to join the Territorial Army and played in their Corps of Drums, performing at military events all over the country.
This led to him working with youngsters in the Northumbria Army Cadet Force from 1994, where he took over their drums as a drum instructor with the grand total of three drummers! Undeterred by the very small numbers, Nev set about recruiting from all over the county and eventually had a complete Corps of Drums along with flute and bell lyre players. He was duly promoted to both Sergeant Major and Drum Major.

Passing on the passion

Luke was born in early 1994 and was Iris and Nev’s only son among four daughters. Nev introduced Luke to drumming when he was just two years old and was delighted to find that it always calmed him down when he’d been having a rough day.

When he was younger, Luke attended mainstream school and sadly because of his autism he was what Nev describes as a ‘walking target for bullies’. He was regularly beaten up, which could (understandably) make him agitated and aggressive, yet something in the music always seemed to soothe him. Slowly the seed of an idea began to grow, and Nev and Iris started wondering whether drumming might improve the lives of other children with similar needs to their son’s.

Later on Luke joined Cedars Academy and found the help and support there that he’d so desperately needed in mainstream. Like many people on the spectrum, before joining Cedars he was horribly bullied for being different, labelled as naughty and hopeless and even told he had no chance of a decent future.
Nev described how the negativity and pain he went through very nearly destroyed him, yet out of something so dreadful would come something quite remarkable.

Luke follows his dreams

Although he was a very nervous boy when he started, the staff and pupils at Cedars eventually gained Luke’s trust, and as he opened up to them, his real talents began to shine through. Cedars made Luke feel safe and instead of being ridiculed he was encouraged to follow his dreams. Even his quirks, including his life-long obsession with hats, were understood and accepted as simply part of who he was.
He became very active in sport and music and started playing the guitar, going on to achieve a first diploma in lead guitar and first diploma in music technology through Gateshead College.
Luke and his partner Elle had two sons together, Oscar and Tyler, and he became a devoted and much loved dad.

Inspiration Drum Line is born

Nev, Luke and Iris wanted to do everything they could to help build the confidence of other youngsters who were going through the same challenges Luke had faced, so they used their incredible passion for drumming and founded Inspiration Drum Line together, running the club twice a week after school.

Nev describes the way the club took off and how much it helped the children who attended as ‘our greatest achievement’.

The youngsters in the group have a whole variety of complex needs, and the effect on them has been nothing short of miraculous. To begin with it was very difficult to get any conversation out of them, and eye contact was impossible, but after a while they started to open up. Now when Iris and Nev do the school run, the children run up and give them high fives, telling them about their day and how much they love coming to drum club.

Staff often let them know how the children’s schoolwork has improved, with their concentration, motor skills, memory and teamwork all having been enriched by their drumming experiences. Parents are equally amazed at the difference in their behaviour at home and their eagerness to get to school, especially on a Tuesday and Wednesday when the club runs.

Finding the strength to carry on

Things were going from strength to strength, but tragically in December 2017 the family’s world was shattered when, without warning, Luke suddenly died at the age of 23 from undiagnosed rapid onset diabetes.

Heartbroken by his loss, Nev told me “I didn’t want to carry on the drums after we lost Luke, but he would never have forgiven me if I’d ended what we started.” Somehow he and Iris managed to find the courage to keep things going, and although he considered giving up, he now says “I’m so pleased I never did because Luke is with Iris and I at every session.”
Some of the original children in the group still remember Luke and often talk about how much they miss his antics and the rapport he had with them because they were on the same wavelength. Nev says simply “He made us proud every single day.”

In September 2018 Iris and Nev were presented with a community award to honour the way they carried on after losing Luke, which was a real achievement, but he says “We get the biggest sense of achievement at the end of every session when the kids go out the door smiling and telling parents what they’ve been doing and waving to us. That itself is worth all the awards in the world.”

It’s clear that drumming is helping these children in many different ways, including giving them a safe, controlled release for their frustrations when things get tough. If you’d like to know more about how it all works, there’s a fascinating article by Michael Drake about the emotional, physical, psychological and spiritual benefits of drumming which is well worth a look: DRUM THERAPY

Looking to the future

Nev’s ambition for the club is to eventually have a drum line in every special needs school in the Borough and for them to compete every few months or so to show off their skills, but it would be a competition with a difference: no losers, all winners; allowing them to focus on what they can do, rather than what they can’t manage just yet.

His message for anyone who’s struggling is simple yet incredibly powerful: “Never give up; you can achieve anything you set your mind to. Life is like a drum, you only have to find your own beat; find YOUR beat and you’re halfway there. Every person with special or additional needs is inspirational to us all, that’s why I called our drum line ‘Inspiration’.”

You can find out more about Inspiration Drum Line
by following them on Facebook here:

INSPIRATION DRUM LINE

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