Dear neurodivergent substacker,
I am reaching out because I would like to share my book with you, and I will give you access to it should you want to give me some feedback. But before I give you my book, I would like to let you know who I am and why I wrote this book and why I am seeking your feedback about it.
So, I’ve been working with autistic young people for a few years now, about twelve to be more precise. I usually work in mainstream settings. The reason why I say ‘I usually work with mainstream settings’ is because at this very minute I am taking a pause from my work while I am deciding what I want to do next.
We are at a time when many neurodivergent and/or neuro-affirming people are putting lived experience of autism at the centre of the neurodiversity conversation. Many autistic people are at the front, leading the neurodiversity celebration movement; and I absolutely love that. Every neurodivergent speaker or author that I encounter in person or online, I think of the many young people I worked with and the impact of those voices speaking their truth loudly in the open can have in their lives. Since my first autism show in 2018, when I first encountered Michael Barton and his books, every single person I supported would have heard of Michael and would have been offered to read my copy of ‘It’s raining cats and dogs’, if not both books Barton had written by that point. Similarly, each new neurodivergent self-advocate expert that I would find out about, I would not only learn from their content and advocacy, I would also share it with my young people. I really loved that.
But in recent times, I have encountered many autistic voices questioning the validity of non-autistic people talking about autism. When I say talking, I mean in a professional capacity, like I do. Every time I encounter that discourse, I am faced with self-doubt and imposter syndrome, because I am not neurodivergent in an autistic or ADHD sense, I was not born neurodivergent, and I have not experienced the barriers most neurodivergent people experience through life. I live with CPTSD for nearly 20 years now, but I had never look at it as anything other than mental health. I am aware some people include PTSD under the umbrella of neurodivergence, but that is another story altogether, especially since I have not spoken about my condition openly for years and I am not convinced I am ready to start now.
I am very proud of my book, because it was a labour of love and the fruit of passion for a cause. The cause of my life (as a sibling), a cause I immersed myself even deeper in the past 16 years (as a spouse), and that impacted me professionally in the past twelve (working with SEN learners in mainstream education). I am talking about ‘equality and social justice’ for all differences, neurodivergent or not; social, emotional, physical. Differences in beliefs, cultural lifestyles, personal identities, romantic and platonic relationships, and so on.
In my book, I tried to tell the story of how in my own however little power and however little voice, I always advocated for wider awareness.
Many professionals working in mainstream settings do not fully embrace neurodiversity. This is a hard truth to swallow. Many people may feel offended by my statement. But the evidence is out there, everywhere. We can see the evidence in the way the educational system makes harder for neurodivergent people to be themselves and succeed. Usually it’s an ‘either or’ situation; you’re either choose to be yourself or you choose trying to succeed. I’d love to be proved wrong in this one.
My work was sometimes complex as I needed to help these young people to conform, to a certain extent, because that was what my role existed for and what it was expected from me; to make sure they stayed in the classroom, instead of leaving lessons halfway through, to help them engaging and communicating with teachers, to promote acceptable behaviours and academic performance. In many cases, they didn’t have any learning difficulty, most of them had no cognitive problem apart from the ones resulting from either burnout or sensory issues. But being autistic, in many cases, means also being non-conforming, being blunt, and not having a high regard for hierarchy as a justification for injustice. Some old-fashioned teachers don’t like that. I knew a teacher who had a catchphrase of her own, she used to say, ‘being autistic is not a reason to be rude’ and she would follow it with an anecdote describing an autistic learner saying something that was true and obvious, but which she would preferred them to be ‘polite’ and lie. On one occasion, a learner criticised a book in the GCSE syllabus and she told him if he couldn’t read that book, there was no point in him being in her class. That same boy had read all of the Lords of the Rings when in year 9, but she didn’t know this, she had not spoken to him about what he enjoyed reading instead. While sitting in her class, his rucksack was very heavy, as he always carried around at least two books he was reading at the time and these were never small books. Moral of the tale, the most avid reader in that year group wasn’t going to finish his GCSE in Literature as he was told there was no point in him being in that class if he wasn’t going to read Of Mice and Man. Do autistic people do things which don’t have a point? Still, the failure was his, and by proxy, mine.
Because of what I told you so far, I realised that those young people needed someone who offered them a safe space at that school, and quite soon, I became that person. I appreciated how important it was to be that person. Unconsciously, I was back in my role of being the protective sister, trying to help the world to be kinder to my little brother. I always wanted to protect him from any harm, but to achieve that, I didn’t need to help him. I needed to help the people around us and by doing so, I hoped, they would be less harmful to him.
I became someone offering a safe space to those young people because this is how I had been built from a young age. I grew up with a disabled brother, who has severe learning disabilities and is also autistic. I grew up learning with him, being with him, being the closest person to him. Consequently, for me, it was natural to be accepting, I didn’t have to think. I didn’t have to be trained. I didn’t have to do anything other than being me, because for me being accepting of differences was the norm. Why would I not accept my brother?
It was commonplace people asking me as a child if I wished my brother was ‘normal’. Not many things made me angry, and that was one of the very few which did. There were so many things wrapped up in that single question and even at that young age, it made me boil. Why would I not celebrate his differences? I could never picture my brother without everything that made him ‘him’. How would that make any sense?
Working in (secondary) education, helped me realise that not all teachers saw difference in the way I saw it. Hence, many seeing me as a ‘soft’ person, because I was always advocating for the young people and trying to explain their behaviour. I would not punish them for behaviours that others considered punishable. Instead, I would sit with them and listen. On many occasions, I would just let them be. That made me soft, I was told.
I would simply give them the space they needed, the time they needed, the silence they needed. I started trying to share this concept with staff. I would explain that it was not that complicated. All you have to do is to let them be and try to understand their perspective before coming to any conclusions. How difficult is that? Do you need training for that? I didn’t think that you needed training for that. But it turns out some people do need that training, thanks to the old double empathy problem. Luckily, I had some allies, but mind you, they were all soft as well.
So, when later I started working in Further Education, I realised this college was far more welcoming to learners of all abilities, learning profiles, learning difficulties, physical disabilities and neurodivergent individualities. But one of the reasons that college was so well prepared for all these differences was because the person leading the learning support department was neurodivergent himself. In there, I saw a big difference from the outset, I could see that every member of the learning support team knew the same things I knew and a lot more. They knew how to support autistic people and now I wasn’t advocating for them on my own and couple of other softies. I was part of a robust team, and as part of the work, I started doing some individualised sessions with young people.
I gradually took stock of that experience and started to consolidate my learning by sharing it with my colleagues, also by creating materials to help the young people I supported. After nearly a decade, I put what I learned together and wrote this book. Therefore, my book tells the story of these young people who were my teachers on autism. The book puts their stories at the forefront because the book isn’t about me or any theories I came up with. It’s not even entirely about the method that I put together, but more about how I came up with the method. The book was the result of organising what these young people taught me and the things that they had said they wished their teachers and other staff knew.
The young people whose stories I tell in the book all agreed to share their experiences as the foundation of the narrative, which gave me the validation I needed to proceed with publishing. However, some autistic experts by experience believe that non-autistic people should not be the ones speaking about autism, which is a fair point. I completely agree that neurodivergent voices should take centre stage in the neurodiversity movement.
For that reason, I find myself in an uncomfortable position, as I will not stop advocating for neurodivergent young people who may need my support, especially because not all of them are yet in a position to stand up for themselves. Many would never set foot on a stage to speak to professionals or give talks. Some are simply not interested in educating others or sharing their experiences. Not all neurodivergent individuals share that vision, nor do they have the desire or inclination to do so.
We need more people celebrating autism. Ultimately, we all want neuroconvergent and neurodivergent individuals to come together in celebrating neurodiversity.
I don’t think we can’t do that by excluding some voices and saying, ‘oh, no, you’re not autistic, don’t talk about autism’. I have never tried to (and I never will) teach about autism from a perspective of being autistic because I am not. But I can tell you in great detail what I learned from my perspective of being a sibling who grew up with an autistic brother, a woman who is married to an autistic man with whom I’ve been sharing life for over 16 years, and from the professional perspective, as for the past 12 years I dedicated my work life to supporting autistic people.
So, no, I’m not autistic, but I do talk about autism, and I would love for some autistic people to tell me that it’s okay, that I can do this, and help silence the imposter’s voice in my head.
I would absolutely love it if some autistic individuals reviewed my book and said, “Yes, this is a useful resource, especially for non-autistic professionals who want to better understand the autistic young people they work with.” That’s exactly why I wrote this book. I’ve worked for so long to build bridges between neurotypical professionals and the neurodivergent young people under their care. My hope is that the book will help me continue building those bridges and expand my reach beyond the walls of the workplace.
I want my message to reach teachers, teaching assistants, and other professionals who feel they need help forming better relationships with young people. My book tells a story that, hopefully, will give them the confidence to develop their own ways of doing that. I offer them a starting point, a simple method based on the principles of an open dialogue.
If you’re an autistic young person in school, college, or university who wishes there was an adult who could read a book like this to better support you, or if you’re an autistic adult who went through education and wished someone had supported you in being yourself; please get in touch with me. I’ll do my best to send you a copy of my book so you can read it and share your thoughts.
Although I’m openly seeking validation, I welcome any constructive criticism as well.
If I spoke to you, please, message me back 🙂
Note: Article originally published on Substack on 06/02/2025
