This year I am taking part in autism awareness month to share some things I have learned over the last 6 years and raise funds for BrightSparks SCIO. The saying goes ‘when you’ve met one person with autism, you’ve met one person with autism’ . This has taught me to be curious and always to question and reflect rather than judging or assuming.

Ben was diagnosed with ASD and Global Development Delay when he was two years old. I still remember being shocked when we were told these were life limiting conditions. His challenges are complex, he is unable to attend a mainstream school and many daily activities families enjoy are simply inaccessible to us. He is also a wonderfully happy boy. There are three main things Ben has taught me about autism that I’d like to share this month.

Autism and communication:

Did you know that 25-35% of autistic people are non-verbal? This blew my mind when I first heard it. Think of the (real and fictional) people you know who are autistic, does this proportion ring true? For many people it probably doesn’t, highlighting the large group whose voices are literally not heard.

Ben is non-verbal. He has never used speech. He has a handful of recognizable words – mumma, dad, da (for granddad). We don’t know why his speech never developed, and doctors have no answers. Given his age, the chance of him every having speech as a primary method of communication is unlikely. Many people make the (wrong) assumption that if he can’t speak, he can’t understand. Anyone who has ever spent significant time with Ben knows this is not the full story. He may be non-verbal but he is certainly vocal. He may not use speech to communicate but he has no problem communicating. Whether it’s taking you where he wants, gesturing loudly or by using his AAC (Augmentative and alternative communication) device, Ben will happily tell you what he wants, how he feels or what he thinks of something. He is fluent in two languages. If we’re discussing what to have for dinner and he has an opinion, he’ll let us know. When his Slovenian cousin says: ‘Ben, daj mi ljubcka’ he will give her a kiss. Which leads on to my second insight.

Autism and affection

Just like I never knew it was common for autistic people to be non-verbal, I also had a stereotypical view about eye contact and affection. I’ve had people say to me ‘Ben can’t be autistic; he makes eye contact’. Whilst I'm fairly sure that assumption has no medical basis behind it, one of the many things we love about Ben is his caring nature. He loves to make people’s day by giving them a big kiss and a cuddle. One of his favourite requests on his AAC device is to ask for a tickle. He’s a cheeky, fun loving wee guy with a big heart who enjoys making people smile and is well known for his cheeky grin and giggles. Indeed it’s often his downfall – it's the same giggle that will give the game away when he’s doing something he shouldn’t be (ie climbing into a cupboard to reach the chocolate spread). And you can guarantee that if he gets in trouble, the first thing he will do, is say sorry (on his AAC) and give you a cuddle. And to be honest, he gets in trouble often. He has no impulse control. He literally can’t help himself with certain things. This usually involves stealing food, climbing on something or trying to escape. Or sometimes it’s more a compulsion or fixation like opening and closing gates, pouring water from one bottle to another, putting stones down drains or running.

Autism and Energy

We suspect Ben's lack of impulse control and hyperactivity is due to ADHD – although he has no formal diagnosis, research suggests that 50 to 70% of autistic people also have ADHD and Ben certainly presents many of the typical traits. Which links to the final part I wanted to share around autism and energy. Another stereotypical view I often hear is that autistic people are very structured, need routine and like to hyperfocus on tasks which are often relatively sedentary. Ben does indeed crave routine – he has routines I don’t even know are routines until we break them. But he also has a huge compulsion to move and has higher energy levels than anyone I’ve ever met. We were going on long bike rides when he was 4. He will happily spend the whole day on the go, in parks, at the scooter track, on trampolines, at soft play. Days stuck in the house are really hard. Even if he’s engaged on a device, his brain is still on the go, he’s flicking from video to video, screen to screen, nothing is watched for more than a few seconds. In activities, it’s not about playing the sport or enjoying the game, it’s about moving and the sensory feedback he gets from running, swinging and jumping. From this perspective, doing 10,000 steps a day will be very easy. ‘Walking’ 10,000 steps is more challenging as he doesn’t really do walking!

Bright Sparks SCIO

Bright Sparks SCIO supports families across Midlothian who have children living with additional and complex needs, including autism. Ben attends their youth club every week and the staff and children there are like family. There is no other facility like Bright Sparks in our area. They are a local charity made up of a small number of people who do their best to raise funds to support the community they proudly serve.

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