Here are my experiences as a child of an autistic adult, and why I believe talking about neurodivergence is important.

Trigger warning, child physical and psychological abuse and trauma.

Recently in America, comments were made about autism by RFK jnr which were widely considered inappropriate by people in the autism community, painting all cases of autism in the most extreme light and not acknowledging the diverse spectrum that makes up autism. His comments were also welcomed by some advocates for the carers of ‘profound’ autism, where the autistic person is non verbal and requires a high level of care. Parents and carers of those with ‘profound autism’ often feel invisible in the evolving autism discussions, and RFK’s comments gave visibility to their experience. However, unfortunately some people, especially in the MAGA camp, with a vested interest in supporting RFK jnr and little knowledge about the topic themselves, started weighing in, using RFK jnr’s comments as an excuse to dismiss ‘low level’ autism as something made up, just quirky socially awkward individuals who should really just get on with it. There was quite a backlash. Some suggested resources and supports should be removed from these people, who are ‘rorting’ the system, and that they should just be put to hard work. I was quite disturbed reading comments in my X feed casually dismissing the experience of autism in this way, without an understanding of the challenges faced by neurodivergent people daily.

As a person who grew up with an undiagnosed autistic (and I also suspect ADHD) mother, I can vouch for how important support is. The changes and support now available to people like my mother may not be perfect, and there is still a lot to know. But at least there is support. There is a language for this experience with which we can discuss the challenges which neurodivergent people face daily. There are funny videos and memes which help us laugh about our experience and stop us from going down shame spirals for our weird and alienating behaviour. Neurodivergent people are coming out, and yes, there is a lot of us. As it turns out many people relate to neurodivergent traits. Does that mean it doesn’t actually exist? Are we just turning something normal and natural and that we can just ‘get over’ into social media stunt so some people can get famous? Should we all just shut up now and get on with it?

The ramifications of dismissing the experience of neurodivergent people who appear to be verbal and ‘high functioning’ is dangerous. Why? Well, one reason from my perspective is because they are more likely to go on and have children than their ‘non-verbal’ counterparts. Like my mother.

And an unsupported neurodivergent parent can wreak havoc on their child’s life without any intention of doing so. Not only are they grappling with typical neurodivergent traits which can make them intolerant towards a child’s needs, such as hypersensitivity, lack of social skills, lack of ‘empathy’, an intense need to micromanage, and rejection sensitive dysphoria, but also there is a good chance the parent also suffers trauma from growing up with these conditions in an unsupportive world, and can act that trauma out on their child.

Here are some of the ways that my mother’s autism impacted her parenting. Please know I am not criticising my mother or suggesting autistic people can’t be wonderful parents. But I am highlighting how the lack of support, and the self awareness that comes with diagnosis impacted her and thus her parenting. Also I want to acknowledge my mother had a speech impediment which would have added to her challenges. But fundamentally what I am talking about here is the way that her autistic traits which were unsupported and unrecognised manifested in her parenting.

Like many autistic people, my mother didn’t like physical touch. I never expected to be hugged by her. It wasn’t until I myself had young children and I saw how much they wanted contact with me all the time that I realised how starved I had been as a child of physical love and affection. My father was kind and caring but not cuddly, so I had really grown up not to expect physical affection. I have no recollection of wanting a hug from my mother, so I guess I had learned not to from preverbal age. I am quite sure I would have been left to cry myself to sleep, as I sucked my thumb to go to sleep until I trained myself out of it at the age of 14. I learnt to self sooth from a young age about pretty much anything.

My mother grew up in Yorkshire at a time when physical punishment was meted out freely to children. Of course those who were neurodivergent would have been on the receiving end of physical punishment regularly, and I imagine this happened to my mother, as my grandmother spoke of her always ‘misbehaving’. In turn my mother also meted out physical punishment, as it was so normalised. As a child she frequently hit me across the head, hard and repeatedly, and even to the point of making me bleed from the nose. This was a pattern if she was on edge or anxious, or overstimulated, which of course, as an unsupported autistic person she often was. She didn’t have impulse control, and I never knew when it might happen. And she never was remorseful. In her mind she was morally correct to do it and always justified it with my ‘bad’ behaviour. I always felt like I was letting her down. So my early childhood was full of physical control and unpredictable violence from my mother. It left me anxious and lacking confidence as I started school, and my early years were definitely affected by this. I was slow to make friends and find my place at school, which left me very vulnerable as a young school child.

My mother and father had lost 2 babies in-between my brother and I. The little boy I know very little about, except I think he was adopted. I wonder sometimes, was my mum too rough with him? Nowdays it would likely have been investigated further than it was. The little girl however, I know had a heart defect, and died at age 8 months. When I was an adult, my grandmother told me that my mother didn’t feed the little girl the right food. I can very much imagine this. My mother was not good with food. It was a chore for her, a stressful event each day she had to get through. She managed to do it and get food on the table each day. It was basic and not well done, but she managed it. But it was a stress, every single day. She was angry while cooking. If I entered the kitchen she would yell at me to get out. I never learnt any cooking from my mother. I also had digestive problems, and illness frequently as a child. It wasn’t until I started to cook food completely for myself as a teenager that I actually experienced easy normal bowel movements.

My mother would also go into periods of burn out and spent a lot of time in her bedroom. Especially when I was younger I remember as a child crying for a long time as she rested in her room during the day with her door locked. She would also sit depressed in her chair for days at a time, and I was not allowed to make noise. On one occasion I was sent to a friend’s house, and it triggered a lot of anxiety in me. I write about that in this article here. 

My mother’s Rejection Sensative dysphoria, another neurodivergent trait, was another challenging thing to grow up with. My mum started to come into my room when I was still primary school age, accusing me that my friends don’t like her. I was baffled and had no idea if they did or not. No one ever said anything to me. It is likely my friends would have thought she was strange but they never said anything to me. But she seemed to want me to make some sort of stance about it. She was always getting involved in my friendships, trying to control them. This became quite tiresome, managing her anxiety about this.

My mother had social anxiety. According to a friend’s mother from that time, my mother wouldn’t involve herself in the parenting scene, and when she came to pick her daughter up from my house after a play, my mum would only open the door sightly to speak to her through the crack while she waited for her daughter to come out.

My mother’s obsessive thinking was a huge challenge for me a child, especially around an issue which my mother perceived herself to have been wronged. She would hold on to anger about a perceived slight for years, raising it again and again if ever another thing I did triggered the memory, or raising it during an argument about something else. One particular time, a friend of mine and I who were around 10 years old had covered ourselves in mud at a near bye building site. My mother was furious, and still raised it even when I was in my late 20s!

The biggest challenge with obsessive thinking from my mum in regards to me, was boys. This obsession plagued her from my preteen years until I finally left home at 17. She started to harangue and taunt me at around age 12, accusing me of sneaking off to go have sex with boys. At 12 years old I was very innocent and had no such intentions, so it was very hurtful to me that she thought this. But more hurtful was that it was just impossible to reason with her. Trying to explain it wasn’t true went nowhere. She would accuse me of being a liar and seemed to relish in the opportunity to dig in even further into the story she had created. It would end up a fruitless argument that would go nowhere leaving me feeling completely unheard. My father never intervened in this and acted as if this was just normal mother and daughter fighting, whereas in fact it wasn’t. I was being tortured psychologically by her. I will say that she purposefully taunted me with this, which I believe was a result of trauma she had experienced playing out. Perhaps it was because she had been bullied herself as a child, and now she could finally feel powerful.  Sometimes she would taunt me till I flew at her in a rage. That would then give her an excuse to hit back at me, giving a physical release for her. I think she used physically violence as a way of regulating her feelings.

As I was getting stronger we had awful physical fights. Between the age of 12 – 14, I was going to school with bruises and cuts on my ears. No one even noticed. My dad would sit there reading the newspaper and complain about ‘not having peace’. He didn’t understand or acknowledge that I was in fact being abused, physically and mentally. I think it was too out of control for him to cope with. She often harangued him and I saw her kicking him and hitting him at times also, so I think it was easier for him to allow me to cop that weight of it rather than try to intervene. In so many ways he was a great and supportive dad. But in this crucial way, he wasn’t able to support me. Years later I realised that this was the overriding cause of my C-PTSD. Being shown love on one hand, then my experience of abuse dismissed and minimised, even as he witnessed it each day, left a very confusing legacy on me.

 I started to get stronger than Mum, and there was one occasion when I was 14 that I remember very clearly. We had been fighting, and I managed to pin her down with my knee on her chest. I had my hand on her throat, staring at down at her. I saw the fear in her eyes. Can you imagine, pinning your mother down with your hand on her throat while your father reads a newspaper? Once I saw the fear in her eyes, I slowly I let my hand off her throat, then let her go.

The physical attacks stopped after that. But her autistic rage and obsession with me didn’t go away. Her torrents of haranguing got worse. Everything that I was doing wrong, all the bad decisions I was making, what my friends were doing or saying… And throughout this, when I yelled back at her, I was held responsible for being the ‘troublemaker’. It has only been the last few years that it has really dawned on me how my nervous system was in a constant state of distress through this.

At the time I was building ways of coping. I would take myself into the bathroom and breathe deeply as she ranted and raved outside the door. Then, once I had centred myself I would calmly walk about the door, past her still ranting at me, and walk away. I would probably stay calm for all of 10 minutes. But I knew that I felt more powerful when I could get myself into this calm state, and this never left me. Learning to calm myself during these moments gave me some very good skills and capacities to stay calm under pressure I have to say.

Another challenge was what we could say was my mother’s socially ‘inappropriate’ behaviour, sometimes saying things in front of other people which would leave me feeling deep shame and embarrassment, especially as a teenager. In many ways I think she was trying to fit in but didn’t know how. And because she was so obsessed with me, she would painfully focus on me when talking to others. One particular time that was very distressing, I was 14. My mother told a friend’s Dad ‘It’s lucky Sandra doesn’t have her period yet or she would probably be pregnant by now’. My mum would not acknowledge there was nothing wrong with saying that, probably saying ‘well it’s true’ or some such thing, and my dad didn’t acknowledge there was either, so I locked myself in the bathroom overnight. It was the only toilet in the house but I refused to come out. I had no other power. I sat in shame and anger on the floor. At one point my dad came to the door and spoke softly. ‘Sweetheart, are you embarrassed that you don’t have your period yet?  ‘FUCK OFF DAD that has nothing to do with it and you know it!’ I yelled. Once again my Dad was gaslighting me rather than acknowledging my experience.

I guess all of this was her way of trying to keep control of me, perhaps keep me safe, perhaps because she had grown up with a certain kind of hysteria around this sort of thing, but it was over whelming and it just got worse as I got older. 15-16 years old was a very challenging time for me. In the evening as I did my homework she would open my door and come into my room haranguing me: ‘I know what you’ve been up.. You are sleeping with boys’ etc etc. It would go on and on and on. She didn’t seem to care that she was interrupting my study. One day I calmly told her not to enter my room again without my permission. The next time she entered, I got up and physically pushed her out of my room, shutting the door behind her.

The next time she didn’t walk into my room, she just opened the door and ranted at me. I promptly got up, took the door handle, opened the door a little wider, then smashed the door into her head. She had a huge bruise and a big egg on her forehead. Of course, I was blamed by my father and spoken to sternly, and my mother was even more enraged. I am not proud of these things, I felt terrible. It was also very confusing to feel hatred for my mother, which I did at the time. You are not supposed to feel hatred for your mother. Years later I had the realisation that it wasn’t hatred, it was love that had no way of being expressed. When I realised that I cried. It was a big release. But at the time I didn’t feel like anyone could understand what was going on, and I felt very isolated. I felt like a bad person. And I had no way of understanding myself what was going on. I knew something wasn’t right. I learnt a little about psychiatric disorders, but none of them explained my mother. Oh if I had of had some understanding and support at the time, things would have been much different. Anyway, after that, she didn’t dare open the door. She just stood outside my bedroom door haranguing me as I tried to do my school work inside. It didn’t stop.

It was exhausting and disruptive. I was depressed, anxious and didn’t really know how to escape.

I think the story of how I left after year 11, and the PTSD response that I had once I did leave after all this is for another time. Let me tell you, it has taken years for me to unpack all of this. There are other complexities in there also- my brother, 9 years older than me, who my mother played me off against, and my grandmother, both who ended up ‘disowning’ my mother when I was 16, of course not understanding either her autism.  The impacts on my life are innumerable.

I didn’t work out that it was autism until the last 10 years of her life, and even then, it has been the last 5 years, starting 2 years after her death, that I have really come to understand. As I myself have worked closely with autistic people and recognised similar traits and patterns that my mum had, and gone through my own process of diagnosis of ADHD and C-PTSD with a psychiatrist who helped me unpack all of this, alongside the occasional psychologist, as well as doing my own research, I have come to find peace finally, after years of searching for answers. I am so glad to all the social media people who make content about neurodivergence. It is healing to recognise traits from this content and to slowly release shame about it.

My mum was caring too, and loving in her way. She had a big heart when she wasn’t anxious. Its just that this was rare. As she got older she was very dependent on me. I felt that it was important I support her after Dad died, which wasn’t always easy. She lived for 15 years after he passed away, and she softened with time, and with grandchildren whom she adored, but still she was always very dependent and demanding. The last month of her life, she was very sick with cancer, but she was the most at peace I had ever seen her. It was like she reverted back to being a child, a kind of innocence, and just sat there with a smile on her face. Once she passed away, I started the long process of healing, and understanding her on a much deeper level.

Life was hard for her. And I have no resentment towards her now. It’s been harder for me to forgive my father for not protecting me. I am getting there. But my mother, I can really understand now how she was, now that I understand about autistm and ADHD.

I am not saying that neurodivergent people shouldn’t be parents. They can be wonderful parents actually if they are self aware and are able to regulate their nervous system. But for neurodivergent people to do this they need to be aware of their neurodivergence in the first place, and be supported to regulate themselves as well as supported to be who they are, rather than force themselves to mask and fit into the world in a way which isn’t true to who they. They need supportive environments where they can have calm and feel seen and heard. Taking away supports from ‘high functioning’ neurodivergent people is not the way.  We’ve come too far. People are over being bullied and ostracised, and labelled as ‘weird’. All those who say ‘there were no autistic or ADHD people 50 years ago’ are wrong. They were the ones isolated in the school yard, targeted and bullied. In my mum’s life there was bullying throughout her childhood, even from her own family. And this continued as an adult. Even at the senior citizens she was avoided and bullied by some. But she never gave up. And this is the thing I want to say about my mother. How brave she actually was, through all this, to find her place in the world, without supports. How things would have been different if she had of been able to access a support worker. If she had of not had stigma about her condition. If she had of been able to recognise the traits and had support to regulate when she needed to. I loved my mother, and at times feel great sadness about these things. So the least I can do now, is let the world know, how real this is. And when it impacts on children, you know, it really is real.