One Mother Shares Her Experience With Neurodiversity

Admittedly, Sonny was a bit of a wild child. But I was too, so Jamie and I thought it was simply an inherited personality trait. I had a very stereotyped image of what autism and ADHD looked like and Sonny didn’t exhibit any of those symptoms. Of course, that’s why so many people go undiagnosed – no one thinks to dig any deeper. My first suspicion that Sonny might be different came when one of their first school reports said they had a higher-than-normal grasp of the English language for a child of their age. They said Sonny was using that to avoid doing what teachers wanted them to. Now, I know that’s a very common neurodivergent trait – but back then we just felt our child had above-average intelligence.

Then came the meltdowns and a lot of emotional deregulation. Again, because I had a similar disposition, we never thought to question it. Both Jamie and I had what’s referred to as ‘familial blindness’ – where your own perception of inherited traits and personalities stops you from seeing certain behaviours or actions as signs of neurodiversity. You just think ‘they take after you’.

The turning point came when Sonny started stimming. Stimming is a self-stimulating behaviour that people with autism will do and while it can sometimes look like a tick, it’s not – they use it to regulate. It can be something as small as wiggling their feet or playing with their hair but for Sonny, it was hand flapping. The saddest thing was they would hide to do it because they didn’t think it was “normal”.

Once the stimming started, I suspected Sonny might be autistic. That’s when our journey to diagnosis really started and I started doing a lot of my own research around 2019. Sadly, it showed me that children’s challenges are rarely taken seriously – oftentimes parents just aren’t believed and the whole thing can be so unfair and inhumane. It also takes up so much time – we spent years trying to get a diagnosis for Sonny, and that’s time children just don’t get back. All the admin and paperwork turned it into my full-time job – plus, you have to completely re-learn how to be a parent to your child without any support or assistance.

We were eventually referred to our local authority for an assessment. Although we were lucky enough to have private healthcare insurance at the time, many providers don’t cover private assessments for autism or ADHD – although ours did cover OCD, which was part of the mix with Sonny. Then, Brighton Council said they wouldn’t accept a private assessment anyway, so we were effectively forced into joining this enormous waiting list. They told us Sonny didn’t present with the usual autistic symptoms – my own research had already shown me a dual-diagnosis was going to be more likely – and when the assessment came back as ‘not autistic’ it was so frustrating. They just couldn’t see what Jamie and I were seeing.

I issued a complaint and they agreed to reassess Sonny. But they’d already lost my trust and I knew we were going to be forced to prove them wrong, which didn’t feel great. Instead, I asked them to accept a private assessment and they agreed – something I wish they’d agreed to in the first place. It would have saved so much time and it would be the one piece of advice I’d give parents of neurodiverse children: don’t ask for permission. Tell them what your child needs and they will listen.

There’s an interesting dichotomy when it comes to diagnosis. Often, the authorities are only interested in diagnosing neurodiverse people if they’re causing a problem – i.e. they’re disruptive at school or to society at large. However, if their struggle is more internal, then the powers that be turn a blind eye. It all comes down to how problematic you are. That said, more and more people are now realising that while neurodiverse people might not be problematic for a neurotypical society, a neurotypical society can be very problematic for them.

2020 was an especially challenging year. My mother died right before lockdown, my relationship with Jamie broke down and I had Sonny at home during lockdown without a formal diagnosis. I also lost my best friend and received a skin cancer diagnosis – plus, I’d completely worked myself into the ground. It’s little surprise I had a breakdown and had to go to therapy. During one of those sessions, my therapist suggested I get my own assessment to see if I was neurodiverse, too.

Around this time, Sonny had developed ‘urges’. The new behaviours included tapping their head repeatedly and they also developed a fear of knives and started swearing a lot. We tried to find our own strategies to cope with it, like asking them to cut a tomato when we were making dinner and when we did go for our private assessment, the psychologist told me we’d developed our own form of cognitive behavioural therapy (CBT) for Sonny. As parents, though, we’d just followed our instincts.

At the end of the private assessment, they said Sonny had autism with ADHD and OCD. By this time it was 2021, and I remember both Sonny and I cried with relief – it was hugely validating to feel like the last two years hadn’t been in vain and that our instincts had been right. The same psychologist also did my assessment (only about a month apart) and he said he was amazed I’d gone this long without a formal diagnosis. At 48, I was finally diagnosed with ADHD/autism and dyscalculia, and everything suddenly made so much more sense.

Sonny and I are still very much on a learning journey – together. Luckily, children have such high emotional intelligence, so our conversations around neurodiversity are now very open and we tend to follow a low-demand parenting strategy. It’s been game-changing to find this new level of understanding with each other. There’s so much self-awareness now and we’re careful of how we broach certain subjects with each other. There’s also a lot of self-auditing, so we pick things apart to understand how we can do better in the future.

Medication for my ADHD and anxiety has been very beneficial. It’s made me much more aware of my stress and anxiety and I’m able to tell what’s normal and what’s not. For years, I’d normalised my nervous energy, but medication has made me realise how unsustainable that was – no one can live in a state of fight or flight all the time. Today I feel so different – so content, less impulsive and less angry. My emotions are far steadier and my patience is much better. Whether we go down a medication route for Sonny is still an open question – really, I think it should be their decision, and I’m reluctant to rush into anything while their brain is still growing. 

Right now, education is our biggest challenge when it comes to Sonny. They found it difficult to sit still in class, to ask for permission to go to the toilet, to hide to stim. The energy Sonny put into hiding their autistic traits at school for fear of bullying has come at a great cost to their mental health. When Sonny started senior school, I asked the teachers whether Sonny could do a four-day week to give him a better chance of success, but they said no, and it’s been a downward spiral from there. I’m not sure what the future holds in terms of schooling – it’s a journey, but I’m hoping some like-minded parents where we live might come together to find an alternative solution. The bottom line is the education system largely fails children like Sonny and there’s very little support available.

Generation Alphabet started life as a small Instagram account a couple of years ago. I launched it during what was quite a dark and isolating time, when it felt like our family was the only one going through all of this. We wanted to connect with other families and specifically, children Sonny could relate to, to share information and advice. Very quickly, I started receiving lots of emotional messages from other parents in similar situations. The power of a support network like this is so important – especially when there’s virtually zero official support on offer. Now we run social get-togethers, holidays (we did a camping trip last year) and I also host regular talks with Soho House. I also consult with lots of brands and businesses on how to they can be more neuro inclusive.

One of the biggest things this whole experience has taught me is the changes and support we’re advocating for won’t just help neurodiverse people – it will benefit everybody, and society overall. Learning, living and working in a neurodivergent way means everybody thrives.

For more information, advice and support, follow @GenerationAlphabet on Instagram.