"I hope you have a child like you one day"

I did, and I was not at all prepared.

When I was young, I can remember a variety of frustrated adults, from teachers to family members, invoking the ancient curse upon me:

“I hope you have a child like you one day!”

Like all fairytale curses, I paid it no heed, but, eventually, it came to pass. Perhaps not in the way that anyone expected - but what curse has ever been predictable. Nevertheless, I do now have a child just like me.

And, holy shit, I was not prepared.

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Being a late-identified neurodivergent parent

I didn’t know that I was AuDHD (that’s autistic and ADHD, for the uninitiated) until after I’d already had my first child. I’m trying to remember, now, whether I’d started to recognise my neurodivergence before my I became pregnant with my second child, but that time is all such a blur. What with a toddler, a fledgling business and Covid to deal with… then throwing pregnancy into the mix. I think I might have started to have some level of awareness that my brain wasn’t operating on quite the same system as everyone else’s, but I was still a way away from realising that the word “autism” could refer to people like me.

My generation, growing up in the 80s and 90s (I was born at the tail-end of 1983), are something of a liminal generation. We straddle, in so many ways, the gulf between a time when people didn’t know any better and a time when people actually made an effort to make things better. We are fated, like beings from Greek myth, to have been given the knowledge that there’s an issue - with gender equity, with racism, with trans rights, with accessibility, and with neurodiversity awareness (and more) - but not any means of redressing the balance. We’re the bridge that will hopefully enable better for the generations that come after us. Aren’t we lucky?!

So we had little to no understanding of neurodiversity in our formative years. As we were learning about ourselves and the world, the only model we had for what autism looked like was Dustin Hoffman in Rain Man. And look, I love that film, but it’s one very specific, and quite stereotypical, depiction of autism. Yet it’s the only one we saw for years. There’s still a heavy leaning, in media portrayals of autistic people, towards the highly socially inept, deeply nerdy, savant-like figure whose inability to read subtext or sarcasm and blunt responses to the people around them is played for laughs. Media representation matters, because these characters are how we come to understand what neurodivergence looks like. And, because of these reference points, that I didn’t relate to in any way, I figured that autism couldn’t have anything to do with me.

Photo by Geranimo on Unsplash

For a long time, healthcare professionals didn’t even believe that women or girls could be autistic. When it comes to ADHD, all the research was done on young, white boys, so the understanding of how ADHD presents was based entirely on a white male population. (The race thing is still a massive issue - although clinicians have started to study neurodivergence a bit more in women, with some considerable way still to go, there is virtually no understanding of how ethnicity impacts presentation. So, as per usual, if you’re a woman of colour, you’re even more screwed.) So, again, it never entered anyone’s mind that a child like me - who could sit still and focus and do as she was told - could have ADHD.

Women and girls often have wildly different experiences of ADHD to the typical male presentation. The “hyperactivity” of the Attention Deficit Hyperactivity Disorder (that highly offensive and totally inaccurate label, that I’ll probably rant about in another post) in boys is usually external - they run around, they can’t sit still, they fidget, they bounce off the walls. In females, to massively generalise, it is more often internal. I always describe it as having too many tabs open in my brain. The thoughts ricochet around like popcorn pinging around a bag in the microwave. It absolutely blew my mind when I found out that some people can think about one single thing at a time. Even more so when I discovered that some people can think about… nothing. I always thought that when someone was asked what they were thinking about and they responded with, “Nothing,” they just meant “nothing important”. But no, my neurotypical husband assures me that sometimes his brain is just empty. I could make a joke, but I won’t. I’m deeply jealous. It must be so fucking quiet.

When people talk about rates of autism and ADHD being on the rise, they’re talking out of their arses. What they actually mean is, diagnoses are on the rise. This is largely being driven by the fact that women are now actually getting diagnosed. Not just women, there are a lot of men that have gone ignored or misdiagnosed too, but women make up a substantial portion of the group. It’s estimated that 50% of all neurodivergent people do not know that they’re neurodivergent, so of course there are a lot of people out there who were bound to discover this fact as awareness and available information began to increase. The pure numbers of neurodivergent people probably haven’t changed much at all - we’ve always been neurodivergent - it’s just that now we actually know about it.

We didn’t know it, though, for a long, long time. I think I was around 37 or 38 when I recognised my ADHD, and it has only been in the last year or so that I’ve been able to say that I’m autistic. I’m now 41. This is relatively new information that I’m still integrating into my life and my understanding of how I can be in the world. For most of my life, I’ve been trying to contort myself into a neurotypical box, and seeing any challenges with that as my own personal failings that I had to overcome. It’s very new to me to give myself permission to consider how the world might work for me as my authentic self.

So I had children believing I was neurotypical. And convinced that, although I appeared to be a bit more shit at some aspects of life than other people (and that that was entirely my own fault), if I just pushed myself hard enough, I could be “good enough”. So I pushed myself really fucking hard, I succeeded in corporate life, I did everything I was supposed to do, and I ran myself into the ground in the process. Which I could just about handle until I had children. But having children changes the balance entirely.

Having children when you’re neurodivergent is a whole new ball game. Accommodating someone else’s needs when your own aren’t being met, especially when you’ve never been given the language or knowledge to know what your own needs are, is a struggle. Finding energy for parenting when you’re sleep-deprived, touched out and needing to be “always on” is tough for anyone, but when you were already using all your energy just to exist within a system that wasn’t designed for you - and is often actively working against you - it is crushing. The just pushing through and the sense of control over my life that I’d managed to sticky tape together all collapsed under the weight. There could be no more masking my way along and teetering on the edge of burnout to make my round self fit that square hole, because I simply no longer had the energy to do it.

I still don’t fully understand who I am, or how to meet my needs, or how to be in the world as a neurodivergent person. But now I’ve got to help someone else figure out their neurodivergent existence in the world as well. I am in way over my head.

The million dollar question

If I’d known I was neurodivergent, would I still have chosen to have children?

Photo by guille pozzi on Unsplash

I’ve seen and heard a lot of people saying that they’re choosing not to have children because of their neurodivergence. And I get it. It’s tough to be a parent of a neurodivergent child when you are also a neurodivergent human. Sometimes those comments hit me hard - they feel like criticism; an indirect assertion that I shouldn’t have had children because of my neurodivergence. I know they’re not meant that way. Everyone has to make their own choices based on the information they have, and these people have made the right choices for them. That can only ever be a good thing. I suppose the uneasy feeling is there because I don’t know if I would have made a different choice if I’d had all the information.

I didn’t understand my own needs. I didn’t realise that parenting would impact me in a different way to neurotypical mothers. That being bombarded by noise and touched out would overwhelm me to a much greater degree. That being shouted and screamed at, and trying to teach them to regulate their emotions, would severely stretch my limited capacity to regulate my own. That juggling school paperwork and communications and ever-shifting pick-up times and things to bring in each day would feel like a Kafka-esque exercise in absurd impossibility.

I also didn’t realise that the chances of me having a neurodivergent child were extremely high. And, of course, there’s nothing wrong with having a neurodivergent child. I used to be one, in fact. But there’s no doubt that they need more from you than a neurotypical child, especially in the society that we live in. If I’d known that I was signing up for a more intense form of parenting AND that I was going to find parenting more intense than most people anyway, would I still have done it?

I don’t know. I will pause to say the obligatory, I love my kids. I do, they’re wonderful. One of them, I think, is neurotypical. It’s hard to tell - sometimes I wonder if he has ADHD, but other times I think he’s just three. The two can be hard to distinguish between. There’s no doubt in my mind that my daughter is AuDHD. We’re still working on a formal diagnosis - a process which could hopefully be completed before the end of next year - but she is so very similar to me that it seems impossible that she could not be. People wished on me a child like myself, and that is what I got.

She’s not exactly like me, of course. She’s her own person. And she’s beautiful, incredibly intelligent, and highly creative. She’s a wonderfully talented artist, and that’s definitely not something she gets from me. She’s kind and caring and has a strong sense of fairness and justice. I think she’s going to do amazing things in this world.

There is no situation in which I would choose to be without her, or her brother. They are wonderful human beings, for whom I would lay down my life. But I say that, now, knowing them and loving them. If I’d never met them, if I was still child-free and deciding whether to change my life forever…

Knowing me, I’d probably have just pushed through. I’d have been unwilling or unable to accept that there was something that I couldn’t do just because of who I am. I was desperate to be a mother. There was a brief period where a hormone issue made me think I couldn’t have children, and I was devastated. Seeing other women holding babies made my heart hurt. So probably we’d have got here anyway. But at least I’d have known what I was signing up for. I could have been prepared, I could have put some strategies in place. Instead of being parachuted into the chaos of two sets of undiagnosed neurodivergences slamming into one another.

Double neurodivergence

Parenting a neurodivergent child is a challenge. It feels like we’re not allowed to say that, because we have to fight so hard to maintain that neurodivergent people are just as valid as neurotypical people. In a world that pathologises and diminishes us, it feels disloyal to our children to suggest that the experience of raising them isn’t the same as that of raising a neurotypical child. We worry that it will be heard as “neurodivergent children aren’t as good or as valuable as neurotypical children”. Which is not the case. But the honest truth is that parenting a neurodivergent child does come with challenges.

My AuDHD child feels things more intensely than most children. She will have very extreme reactions to perceiving she has made a mistake, or thinking that someone else has something she doesn’t have. Those extreme reactions are very hard to manage, and take their toll on everyone. She finds it difficult to manage her reactions if her clothes are uncomfortable, which they can become with the tiniest of adjustments to how they sit on her body. She needs a lot of attention and reassurance. She needs us to show we love her, often, but she doesn’t like praise or physical contact. The number of foods she is able to tolerate is worryingly small, and diminishing on a weekly basis. She often thinks that other children don’t like her or feels like she doesn’t fit in - a feeling I remember so very well from childhood - but doesn’t understand how to navigate playground social interactions. She struggles with transitions, and processes like brushing teeth and getting dressed or undressed are daily battles. She doesn’t sleep well, and she takes a long time to go to sleep, which means her dad and I are trying to handle all this while being really tired. She doesn’t have any significant additional care needs, so we have less to contend with than many parents. But it’s a lot. I love her, she’s an amazing human, she’s wonderful and I wouldn’t change her. But it’s a lot.

Photo by Matt Hoffman on Unsplash

Parenting as a neurodivergent person is also a lot. I struggle, way more than I realised, with not getting enough sleep. I find trying to focus on repetitive children’s games tortuous. For some reason, I was fine with the crying when they were babies, but, now they’re older, the shouting and screaming, especially when it’s directed at me, sends my nervous system into fight or flight mode. I find the constant demands on my time and attention, the constant need of me, overwhelming.

One of the biggest issues is that I haven’t yet really got a handle on how to take care of myself. I’ve spent so long thinking that I needed to change myself, and so little time being aware of my true self, that I simply don’t have the tools to meet my needs in a strategic way. I don’t even have the tools to identify and name those needs. It’s something I’m working on, but we’ve a way to go. And I’ve been prioritising caring for my children in the time that I’ve known about my neurodivergence so - as is so often the way with mothering - caring for myself has gone on the back burner.

But therein lies the rub. Because how can I possibly teach my daughter how to recognise and meet her needs, how to regulate her emotions, how to be her authentic self in the world, if I don’t know how to do those things myself? I need to learn, and fast. Which is a hefty pressure to be carrying when you’re also bearing the weight of motherhood, life and everything else.

Isn’t it always the way, though, that the child who is most like you is the child that you find most difficult to parent? They trigger you by reflecting parts of yourself that you’d rather not look directly at. They frustrate you because they’re struggling with things you struggle with, and it’s hard to help them with something you’re not great at yourself. And you clash because you’re so similar. You butt heads, and you know how to press each other’s buttons. It’s always a tricky dynamic, even without neurodivergence thrown into the mix.

I think the major challenge, for me, in all this, is that there never seems to be enough space. Space to consider who I am, who my daughter is, and what might work for us. Space, as well, to consider who my son is, so that his needs aren’t lost in the whirlpool of ours. When I’m running on empty - tired, nerves frayed, overworked and trying to be there for my children - and when my children are having big emotions, it feels like I am constantly fire-fighting. Trying to dodge problems as they’re lobbed at my head, with no opportunity to step back and look at the wider landscape to find a route through.

The system is so stacked against us. Getting a diagnosis is an obstacle course that seems to have been designed specifically to thwart neurodivergent people, and it is a LONG process. Even with a diagnosis, there’s pretty much no help for adults, and not all that much for children. And then we’re all mocked, belittled and disregarded by society. Our contributions are blocked and limited by arbitrary barriers. In the UK, neurodiversity isn’t even a protected characteristic. So, as long as you meet our access needs, you’re legally allowed to discriminate against us. Nice.

Side note: I have been approached by a university to discuss a research project into what the implications would be of the UK making neurodiversity a protected characteristic. Currently, it’s considered to be covered by disability legislation, but that only covers access needs. You could theoretically, for example, bully a work colleague because of their autism, as long as they weren’t facing any barriers to doing their job because of their autism. If any of you have any thoughts on that, I’d love to hear them!

What we do have, though, is each other. And, on the whole, I’ve found the neurodivergent community to be such a warm and supportive group of humans. So many of us recognise how it feels to live undiagnosed for so long, and the trauma that comes from that. We understand the desperate desire to create something better for our children. And we recognise the fear that we might not be able to.

So we can support one another. We can amplify each other’s voices. We can advocate for one another’s children. We can give each other encouragement when we’re running low. We can share the advice and tools we’ve learned, in the hopes that others can sort through the accumulated wisdom to find the piece that works for them.

It’s all we’ve got, really. But we’ve got each other, and that’s a lot. And I want you to know that, if you’re a neurodivergent parent trying to work out how to parent a neurodivergent child: I see you. It’s hard, it’s ok to find it hard. You’re doing great.

And you’re not alone.

10 things I love about you

As a coda, because I feel guilty about listing the elements of parenting my daughter that are challenging, I just want to list some things about parenting her that are bloody beautiful.

• When my first book was published, she made me a picture (showing myself and my co-author with our book) to say congratulations.

• When I was ill in bed, she made me a card telling me how much she loved me and wanted me to rest lots so I got better. She regularly makes little pictures or cuts out love heart shapes on which she writes “I love you Mummy”, just because.

• She wanders around the house singing songs that she’s making up as she goes along, and sometimes the lyrics are so freaking profound it’s unreal.

• She’s my biggest cheerleader, and always tells me that I’m a brilliant writer (I’m not sure she’s read anything I’ve written because, you know, age suitability and all that, but she believes in me anyway!).

• She makes me think, because she thinks so deeply about the world, and always asks incredibly thoughtful questions.

• She cares so much about the world, and has made bug hotels to look after the insects, picks up rubbish whenever we go to the beach, and keeps asking me what she can do to help people who are homeless.

• When a boy at her little brother’s nursery was being mean to him, she offered to go down there and talk to the boy and tell him to stop being unkind.

• She is loyal to her friends, and when a girl at school was unkind to her best friend she stuck up for her friend, told the other girl not to be mean, and came up with ways to cheer up her friend. She also refers to another of her friends, whose mum is a friend of mine so we all spend quite a bit of time together, as her sister. Which is just so cute.

• She cried for about half an hour, once, because a character in a film was just too cute. She finally got past it, then, when she went to bed that night, she remembered again about how cute it was, and cried for another 20 minutes.

• She loves jokes, although she doesn’t really get how to make them up yet. She particularly loves a knock-knock joke. So she laughs her head off at things like, “Knock, knock.” “Who’s there?” “Boo.” “Boo who?” “Oh, don’t cry!” But she will come up with jokes like, “Knock, knock…” etc “Bird.” “Bird who?” “The bird flying over the table.” Erm, right. She’s also amazing at accents. I don’t know where she gets that talent from, but every new accent she hears, she works on imitating. So when she’s doing little comedy skits, or playing with her dolls, all the characters have different regional accents. Which I find incredibly impressive.

That’s just a few things off the top of my head. She’s awesome.

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