The Autism Show

On Friday I attended The Autism Show at London’s Excel Centre. As you travel along the journey that is autism and neurodiversity you soon discover that there is a lot of information out there for people in your situation but the trick is finding it, and finding it at the right time. There is a lot of luck involved and some of our biggest “wins” have come off the back of chance encounters, random conversations and simply being in the right place at the right time. So this year I cleared my diary to spend a day surrounded by people that have been there, done that and are literally wearing the t-shirt. It was a game of statistics – talk to enough people about the challenges you face and sooner of later you’ll find that killer piece of advice that makes the penny drop.

When people say “you make your own luck” they are talking about days like this.

Little white lies

I decided not to tell the girls where I was going. Emily is still struggling with the amount of attention Victoria’s autism gets, and we had a Saturday night coming up that was all about Victoria. And V likes routine and I was concerned news of my day trip about autism would play on her mind, so I played this day down and told the girls I was going to work. “Why are you wearing jeans instead of trousers? Where’s your shirt? Have you lost your work shoes?”. It might have been easier to tell them the truth!

My little white lie did mean I had to leave for the station at my normal time – who needs a lay in on their day off anyway? – which gave me the privileged position of being first in the queue for hall S8 where the show was taking place. And this was important. The show is basically divided into the 3 parts: the stands where businesses, charities and schools share their stories and sell you their wares, the 3 stages where professionals and those with lived experiences tell you their story and the one-to-one clinics where you can book a 30 minute slot for some free, personal, professional advice. One of those clinics related to “Educational Rights”. I needed one of those slots!

The race to the desk

Not only was I now first in the queue, I had a map! I knew exactly where I was going to book my place and so with military precision and the stealth of a cat I shot through the exhibition hall. With the stands laid out in a grid pattern, I had to zig zag my way through to the clinic registration desk, avoid smiling representatives wanting to have a chat and beating the other visitors who had the same idea. This was like a human version of PacMan and my preparations paid off; my nearest challenger got stuck in a dead-end where a sensory display was still be set up and I made it to the desk as the victor and that precious slot was mine! It was only a minute after the doors opened and already I had achieved something… this was going to be a good day!

Practical Classroom Adaptations for Autistic Students

After catching my breath my first stop was a presentation by Aymeline Bel, head of the Queensmill School, who gave a great talk about the approaches her school takes to give the best education to those on the spectrum. She acknowledged that being a specialist school where all pupils have autism means they can spend far more time putting into place changes and provision for autistic children, but these were approaches that could be used elsewhere.

Aymeline started her talk with a comment that surprised me. I have previously spoken about the fact that I never describe Victoria as “autistic”, but that she “has autism”. To many this is semantics but to me it was very important to establish that Victoria’s autism doesn’t define her, it is just one of her many attributes. Aymeline sees it differently and started with a quote from Jim Sinclair, and autism rights activist:

It is not possible to separate the autism from the person – and if it were possible, the person you’d have left would not be the same person you started with.

Jim Sinclair – Don’t Mourn for Us

Given that I have often said that, given the choice, I would not take Victoria’s autism away from her as it is such a fundamental part of who she is, I guess this should have been a pretty obvious statement to hear, but nonetheless it is one that continues to make me think.

For anyone that has visited a school that specifically caters for autistic children (there, I said it!), the adaptations described won’t come as much of a surprise: quiet spaces, calm environment, spacious, space for sensory regulation with OT equipment… but my key takeaways from this session were the description of an “autism-first” approach to teaching which I took to mean this: rather than teach say maths in a fairly standard way but in an autism-friendly environment, the approach here is to change the way maths is taught, for example embedding sensory experiences into learning so students see, touch, smell, hear and taste during their learning whilst the child sits, stands, wobbles and otherwise stims on their seating of choice; changing the teaching methods completely to suit the children in the class whom they have built a close relationship with. The other takeaway from me was a simple phrase:

Being autistic is traumatic

So the last thing schools should do is add to that trauma…

Insights from an Autistic Teacher

Following my 30-minute one-to-one discussion on Educational Rights, which I won’t go into detail on just yet, I then sat down for a 25 minute talk by Chris Bonnello, autism advocate, author, speaker and founder of Autistic Not Weird. Chris spent much of his professional life as a teacher in both mainstream and specialist schools and reminded me very much of a previous teacher of mine in terms of his calm nature, mannerisms and quietly confident ability to relay a story that keeps you listening and learning. The anecdotes were amusing and whilst I will not attempt to do justice to his message by relaying it here (see his website for more of what he is about), I will run through a few key messages that I picked up from his talk.

Like me, Chris is an advocate of giving everyone equally of opportunity. I do not believe we as a society can or should strive for equality of outcome but we absolutely should give everyone the chance to be the best version of themselves. And to achieve this, we have to make those opportunities accessible to those with autism. Taking football as an example, Victoria may not ever play for England, but if there were only mainstream teams teaching mainstream football to mainstream kids, she wouldn’t have the opportunity to try. Or would struggle along, attempting to fit in whilst masking the anxiety it was causing. With Swanscombe Tigers ability team, she is flourishing as the best she can be, and enjoying it too.

If people think differently, let them do differently

To give access to education, we have to teach autistic kids in a way that enables them to access the subject at hand. The challenge is that every autistic child is different so the way each is education needs to at least be adapted to suit their needs. It may be that for many, mainstream school with some interventions and altered practices work well. For others a specialist provision will be required to get the best from that child. Others still will thrive with one-to-one or home schooling. Working that out is one thing, getting it in place is quite another!

Something we don’t like to think about is that autistic children are far more likely to be bullied that their neurotypical peers. We don’t like to think about it because it’s a horrible thought. But mention it to a school and they will usually say:

Student wellbeing is paramount

Every school everywhere

Google the phrase and you will see school upon school that has that phrase front and centre on their website.

Paramount: adjective. More important than anything else.

I wonder if that really is true of every school and for every student.

A very modern family

A real highlight for me was to listen to Carrie Grant MBE given an amazing talk/presentation about her family and what she and husband David had learnt raising a very neurodiverse, culturally-mixed family, stories that are told more fully in their book with the same name as this session. There was so much to digest in these 40 minutes where she described the challenges and struggles, but also the successes and achievements she and her family has experienced, but this was genuinely one of the most inspiring, thought-provoking presentations I have witnessed. A few key memories from this session were:

How come we [parents of autistic children] can diagnose another person’s autism in 60 seconds, but schools often can’t see it?

It’s very true that as a parent of a child with autism, you become tuned in to spotting others on the spectrum.

Fix your face! Be ready for those big announcements

I’ve heard this said before that autistic people are far more likely to announce that the are gay, trans-gender, bi-sexual or otherwise far more diverse than the normal population. One school of thought is that they are desperate to find their place in the world, so joining an otherwise minority group gives them a sense of belonging. I’m not sure myself, but there’s probably something in that. But Carrie’s point here was that those announcements are likely to come and despite the commonly-held belief that autism people struggle to read faces and body language, if your face says horror when you mouth says “that’s nice dear”, that will stick with them for a long time and they will be less confident to speak up next time. I guess this goes for all kids…

Normal is an idealogy

Who decides what is and isn’t normal? Your normal will be very different to mine, yet we shoehorn our kids into normal behaviour, normal schools, normal aspirations. Why? Brilliant creativity and genius comes from the abstract, the different… the abnormal. Let’s embrace it!

Anxiety <-> Toleration <-> Demand

If you lower a child’s anxiety, their ability to tolerate change increases, so you can increase the demands you put upon them. Increase those demands too much and their toleration levels decrease and anxiety rises. Simple stuff really.

The opposite of belonging is fitting in

If your child is spending all their energy trying to fit in, then they don’t really belong no matter how it might look from the outside.

Stands and stalls

A spent a bit more time in the afternoon wandering around the many, many stands at the show. I have to admit the freebies were a bit thin on the ground, but what these stalls lacked in free pens and gadgets they more than made up for in knowledge, expertise and information.

Several schools were in attendance to describe how their approach to education works for their students which, whilst none of the schools were within a reasonable travel time or reasonable cost, were thought-provoking nonetheless. I particularly enjoyed speaking with the head at one academy group of “SME” schools; Special Mainstream Education that is looking to bridge the gap between mainstream and specialist schools.

I had a fascinating chat with Richie Smith of Awesometistic CIC after I was drawn to his stand by the very nice Lotus sports car sitting next to a table of information and copies of his book The Art of Weeing in the Sink. After briefly telling me his story of growing up undiagnosed in the north east of England I had to ask the obvious question: what’s with the sports car? He described how he takes this car to schools and deprived areas where he talks to children with all sorts of challenges and all sorts of backgrounds before inviting them to sit in the car and feel awesome. After all, if an autistic bloke with his background can have such a fine motor, then so can they! A truly inspiring story that I look forward to reading fully as I stuffed a signed copy of his book in my bag along with dozens of other leaflets and brochures.

Overall Impression

I was the first one in and one of the last to leave. As I said, this was an opportunity to meet, speak with and learn from others and I grabbed it with both hands. And I left with a headache, a need for a beer but an overall feeling of optimism and that alone was worth the entry fee and the 13,000 steps! I’ve seen some criticism that it is not particularly “autism-friendly” as it is busy, a little noisy and a sensory overload waiting to happen. Whilst this is true to a degree, a number of things were put in place to assist. You can come and go as you please once you have a wrist band (and the Excel centre itself is pretty quiet, all the action taking place in a number of separate halls). There were quiet rooms if needed too. And each of the 3 theatre areas utilised Silent Seminars’ wireless headsets, which was great for being able to listen to the speaker without distraction but slightly strange for them as they couldn’t hear themselves as there was no loudspeaker connected to their microphones!

There is so much information out there if you know where to look, some good, some not so helpful, some hidden away so you have to have more than a dose of luck to uncover it. But I would recommend this show as an opportunity to make your own luck… you never know but in a room of hundreds of like-minded individuals with lived experience of autism, you might just find that one contact, that killer piece of knowledge or that small ray of hope that makes things that much better going forward. Maybe I will see you there next year…