Hi, I’m Dave, and I’m the father of Nadia, a 13 year old autistic girl with ADHD. The start of Stress Awareness month and World Autism Day on 2nd April give me the opportunity to share what I have learned about autism, in the hope to go a bit beyond driving awareness but also developing a better understanding.
Before I do this, I should highlight that I am neurotypical. This is a dad’s perspective, and whilst I do struggle to cope some days with trying to be the best dad for Nadia, I am fully aware that these struggles are nothing compared to those that Nadia faces day to day. Born at 25 weeks, spending her first 6 months in hospital, and 3 years with a tracheostomy she has had to battle most of her life. She is incredibly courageous, and we share wonderful moments. But we are human, and it is often not easy. Here’s what I’ve learned:
The ‘S’ in ASD (Autism Spectrum Disorder) is super important. Society can often over-simplify so that 2 stereotypes are often pushed to the fore - someone with a special interest who is seen as a genius, or the mute child who can’t function independently. But the reality is that there is so much in between.
Sometimes I think the easiest explanation for autism is that the brain is simply wired differently to the rest of us neurotypicals. A lot of how society conditions us relies on unwritten rules that are hard for someone with ASD to understand, let alone navigate. The challenges this poses have really started to escalate in secondary school where the pressure to ‘fit in’ can be overwhelming.
Being overwhelmed is a very common experience, but it can come from things that many neurotypicals might take for granted. For Nadia, sensory issues can be a real trigger - simply brushing her teeth or hair is a challenge. Simply going to school can drive huge anxiety often through the sensory overload she can feel. It can be noises, smells, crowds, textures (uniform) that trigger a feeling of anxiety or panic that needs to be released, and often at the end of the school day. I have had to learn to be a lot more patient, and try different strategies to help a resulting meltdown rather than unintentionally fuel it further.
I have seen how being an autistic teen girl can be lonely and isolating. Every social situation can be exhausting, and creates a fear of knowing or saying the wrong thing. Again this might be seen as strange behaviour, but there is an amazing personality waiting to reveal itself.
We need to understand stimming better. What might be seen as weird behaviour is simply a way for an autistic child to keep calm and manage their anxieties. It may be a jiggling leg, excessive playing or even knotting with the hair, rocking backwards and forwards, or running around in circles with a smile on your face, but we need to avoid being too quick to judge.
A lack of eye contact or general lack of apparent physical engagement does not mean the autistic child lacks interest in what someone is saying. I used to think that Nadia wasn’t too interested in or listening to what I was saying, but usually the complete opposite is true.
Nadia wanted me to highlight the lack of representation of autism in the media. We talk about this a lot. We are so much more inclusive as a society these days, but by the same token we also have a long way to go.
I’ve often heard the expression ‘isn’t everyone a little bit autistic?’ - I’m not a fan of this. I feel it undermines the struggles that those diagnosed with autism face every day. Nadia also suffers from OCD (Obsessive Compulsive Disorder) which suffers the same perception challenges, but for Nadia her hand-washing routine can genuinely cause distress multiple times a day, and gets in the way of her leading a ‘normal’ life.
I recognise that there is a generation of adults for whom autism was never really a thing when they were growing up. Clearly there are adults with ASD, some may be diagnosed, some may not be, or even be aware they have this condition. Let’s appreciate people for who they are, it’s far too easy to highlight somebody else’s differences in a negative way.
Above all there are some wonderful strengths that make anyone with ASD the unique and wonderful people that they are. Here are just a few. They can tend to be super honest, have a strong sense of fairness and justice, be very loyal and trustworthy, kind, love learning, are analytical, creative and dependable. Just like anyone, they are different, but will just need that little bit more support to reach their full potential.
With thanks to @commaficionado (aka Pete Wharmby on Twitter) and Siena Castellon (and her wonderful book ‘The Spectrum Girl’s Survival Guide’).