Penny Hooper MBCS, cybersecurity professional, author and UN Women's Delegate, shares her experiences of neurodivergence — specifically, the little known area of selective mutism.
Let me paint a picture. Back in the late 90s there was a girl who, at the age of about four, went to a typical primary school of the time. It was a christian school with concrete walls, large, cold windows and everything else you might expect: computers weren’t yet readily available, but there was a typewriter to play on; the headteacher had a name the kids made fun of; there were coat racks in the hall to hang your wet coat after a typical British autumn day. And of course, there were assemblies and lunchtime prayers — which the little girl vehemently refused to take part in. This girl also struggled to fit in. She didn’t know it at the time, but she would spend longer learning ways to socialise and make friends, and certain subjects would be difficult for her.
One day, the impact of the constant bullying from the other children — or at least one in particular — and the feeling of being misunderstood finally caused her to withdraw into herself. In her still-developing mind, she decided that if she wasn't being listened to, if the grown-ups weren't helping her, if she couldn't find a way to explain her needs and frustrations (which she didn't yet understand herself) — then she might as well just stop trying, and thus stop talking.
She was labelled shy.
This 'shyness' lasted through to secondary school. Having reached the age of 11, she had every intention of breaking out of this now well developed, persistent lack of talking, which had evolved so far that she spoke in a whisper even with friends outside of school — but, thankfully, not at home. Her breaking out of her silence was supposed to come in the form of beginning a new school, different to her peers — but when a few children also went to the new school after all, it didn't happen. The girl eventually broke out of the clutches of her self-made cage when she went to college. Not many of her peers were interested in software development, apparently; it wasn't even her own favourite subject, either.
Even then, she wasn't entirely free. Yes, she did finally begin to speak in an educational setting, finding her confidence to speak up for what is right (although, not always — as you might imagine from a hormonal teenager), but was anxious to hide the earlier part of her life from her peers in order to seek out acceptance. She had a long road ahead to learn the social necessities she should have learned at school, and she had an even longer road to overcome the trauma that came with it.
At the age of 30, after battling to pass a Master's degree which she nearly failed, blaming it on her persistent mental health issues, she came across something that would turn her world upside down: the missing piece to the equation that was her life. The reason for her struggles. She not only realised she was autistic, but she had also been suffering from a rare anxiety condition called ‘selective mutism’ for all those years, all those years ago. She was no longer an alien, alone in the world, who had to hide a part of herself to be accepted — she was part of a community of others who had selective mutism too.
If you haven't yet guessed: that girl was me.
Selective mutism, autism, and articulating needs
Selective mutism affects one in 140 children. It affects girls more often, and children who have recently migrated from their country of birth. Most research and information available is about children — but children grow up to become adults. For me, my diagnosis was not only missed, having only found out at the age of 30 that I had selective mutism and was autistic, but I had to learn about how it had affected and still affects me entirely by myself.
As an adult, this obviously affects my professional life. Thankfully now, at the age of 35, I have learnt a lot about myself and I am learning ways to express my needs — although I have a long way to go to encourage others to accept selective mutism as a real disorder and thus make accommodations.
It’s important to note that selective mutism can, but does not always, go hand-in-hand with autism. In fact, my newfound awareness of my childhood selective mutism was the reason behind my current understanding of my autism: at the same time as my discovery of selective mutism, I came across an article that described how autism presents differently in females. Apparently, girls are more likely to develop selective mutism — thus, it has been described as a symptom of autism.
It has been discussed many times over the years, but I will say it again: a lot of past research into autism has been done on boys. Although, this is not to say that girls and boys necessarily present autism differently; this is to say that this research was done on a select number of autistic boys. This means that it’s just as likely a lot of boys also went undiagnosed as they did not present the way the research group did. And of course, as you will read on the Selective Mutism Information and Research Association (SMiRA) website, not all those who suffer or suffered with selective mutism are girls.
However, because I am also autistic, I often do explain my needs from the autistic side of the coin — for example, saying ‘I might struggle to articulate myself in a large group of unknown people... because I am autistic.’ When in fact, it's mostly the trauma of having lived with selective mutism as a child.
The other issue that I face is distinguishing where my struggles originate. Is the struggle I am facing a result of my selective mutism, because I am autistic, because I am female in an unequal world — or an amalgamation of these?
As an adult
As you can imagine I have had some interesting experiences, to say the least, as an adult with this unique backstory. Although I had decided software development wasn't the career path for me, I did eventually find my way back into IT and I am now a cybersecurity professional. Being an autistic person overcoming selective mutism, comes with its own unique challenges in a professional setting.
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While a lot of the barriers I face — as echoed in BCS’ November 2023 report, The Experience of Neurodiverse and Disabled people in IT 2023 — are a result of being autistic (such as having audio processing issues, difficulty verbally articulating myself, being easily distracted in noisy environments, and sensory overload to name a few), my selective mutism can also exacerbate difficulties with verbally articulating myself: imagine a day where I am reminded of the trauma I faced from not talking, being acutely aware of my voice and how it sounds because someone commented on my laugh, and then finding it difficult to talk as a result. While the chances of fully regressing to that little girl who whispered is very unlikely in my case — probably because I am pretty stubborn and refuse to give up — it does knock me a little. However, I cannot say others with selective mutism are in the same position as me.
Now, some of the mitigations described in the previously mentioned report are very welcome: having well-defined meeting agendas, reflection periods post-meetings, written communication for clarity, closed captions where possible (I wish this was available in day-to-day life too!), and the provision of interview questions in advance. But most of these are to help me as an autistic person. What about the days when I am not feeling comfortable talking because of my selective mutism? What about other individuals who are mute but have a lot to bring to the table? The aim to ‘foster an environment where neurodivergent individuals can express themselves without undue pressure’ was mentioned in the report, which I agree with — but the objective possibly needs to be expanded for those who find it difficult to express themselves verbally and instead offer a way that they feel more comfortable with, such as text or email.
There is also one point that I want to bring up: ‘encourage senior [neurodivergent] individuals to role model and ‘come out’. Despite the negative experiences described in the beginning of this article, I do have to mention that I don’t regret the challenges life has thrown my way. As a result of living through selective mutism (and with autism), I have learned from a wealth of experiences and been able to help others. Despite previously trying to hide that part of myself, I am now more open and honest, and already I have had people come to me for advice.
This is something that I wish to expand on; especially since most information out there is aimed at children and not adults, I have plans to be that role model, both at work (I am part of an amazing team of individuals who raise awareness for disabilities, including neurodiversities, and I am already advocating for selective mutism) and more widely. It’s an amazing opportunity to write this piece for BCS, and future endeavours include more advocacy in the shape of a YouTube channel and pushing for policy changes at the UN level in my capacity as a UN Women’s Delegate this year for CSW68.
If you would like to learn more about selective mutism, here are some links:
- NHS mental health: selective mutism
- Selective Mutism Information & Research Association (SMiRA)
- iSpeak
You can learn more about my own experiences here: www.thegirlwhowhispered.com
