"I knew from birth that my daughter functioned differently"

Kerry Eames, a former teacher, writes about discovering that her daughter was autistic and through that process, realising that she is neurodivergent, too.

There was never a lightbulb moment, but I knew from birth that my daughter functioned differently. She was alert from day one and exceptionally strong. I think the words you might use are ‘curious’ and ‘driven’.

She progressed rapidly in many cognitive aspects and was moving around a lot sooner than her peers, but it became evident that her progress socially was unconventional.

By the time she attended pre-school the meltdowns were major and very different to a tantrum. She couldn’t be consoled with hugs and affection (that just made things worse) and she could be very aggressive.

I was aware of autism and had been looking into this more and more. As she approached school age, I felt we needed to explore this further and her pre-school agreed.

As a teacher, I know first-hand the struggles SEND (special educational needs and disabilities) children have at school, but in my experience, those without a diagnosis have it a lot worse as they are misunderstood and labelled as the ‘naughty’ child. I didn’t want that for my daughter.

I went on a deep dive into the world of neurodivergence in order to support my daughter and help those around us understand how autism can present in girls (because, let’s be honest, everyone thinks they know what autism is based on how it is portrayed in the media, but it is so much more.).

Getting a diagnosis

It took us three years to get a diagnosis, battling the misconceptions even paediatricians still hold about what autism is and isn’t.

I cried when we were given the diagnosis, not because I was sad, but because I was relieved, felt vindicated and knew that things could be just a little bit easier, as it would now be harder for people to discriminate against her.

I’m not delusional, I know she will come up against lots of ignorance and be treated badly by people who don’t understand her, but this diagnosis helps her understand herself and she is beginning to advocate for her own needs as a result of understanding who she is.

Whilst going through the process of diagnosis for my daughter, I did have a lightbulb moment as I ticked off more and more of the criteria for myself.

The fact that ASD (autism spectrum disorder) and neurodivergence had become an obsession for me was a massive clue, but the struggles I had had throughout my life could also all be understood through the neurodivergent lens.

I have had five major burnouts in my life. I was regularly diagnosed with anxiety and depression and put on a course of medication that never really made much of a difference. I push myself to the extreme and expect perfection in everything I do.

I struggle to maintain friendships and although I was relatively popular at school, university and work, I have never had friends that have stuck around when I left those settings.

I have been diagnosed with ADHD (attention deficit hyperactivity disorder) and I know that I would receive an ASD diagnosis too, but the waiting lists are so long, I have given up and just accept the fact that I am.

My daughter’s education

We are really fortunate that our daughter attends the school that she does. They have listened to us from the start and have been guided by me when we have come across barriers.

There motto is ‘Only one you’ and they allow children to be their unique selves and aren’t slaves to testing and performance tables.

Don’t get me wrong, school is still a challenge and most days are overwhelming, but we are finding a way through. Classrooms are too loud, bright, crowded and overstimulating for neurodivergent children.

My daughter has a PDA (pathological demand avoidance) profile and can be quite challenging. Her teachers do all they can within the confines of a creaking education system to keep her learning, which is something she loves, as she is always reading books and asking questions.

The national curriculum at KS2 is too limited as there is so much emphasis on reading, writing and maths. My daughter loves science and knows more about the periodic table than I ever have.

She is creative as well, and these two things just aren’t explicit enough in her education (it’s amazing how rigid the national curriculum is from such a young age).

There is too much judgement, constraint and testing in education. It is too much for neurotypicals, let alone neurodivergent children. This is one of the reasons I left the education system and no longer work in a job I once loved.

Our home-life

Home is a safe and happy place, but it is fairly isolated. Structure and routine are a key feature, but there is a lot of mess amidst all that.

Living with ADHD and ASD combined is really challenging and as a neurodivergent household, we often find that one person’s stimming (self-stimulatory behaviour) really irritates another person who needs quiet and calm in order to function, especially when decompressing at the end of a busy day. This can cause a lot of friction and misunderstandings.

As I understand myself better, I am beginning to be able to explain my actions and responses to situations, which in turn is helping my daughter develop her knowledge of her own reactions.

We rarely have people come to our house, which I think stems from a fear of judgement on my part. Most people we encounter have little knowledge of neurodivergence and I feel they would judge our mess and chaos and not see our need for that, in order to be creative and function.

What helps and supports my daughter

Sensory seeking behaviours are a key feature for my daughter and soft toys, blankets and cushions are everywhere around the house (essential to help her regulate).

She also uses a yoga ball, rebounder and wobble cushion to help with vestibular feedback, as she constantly needs to feel pressure (especially after a day at school, she literally bounces off everything when she is processing her day).

One of the key things she does to process the world is draw and write stories. Often, she creates stories which contain elements of things she has encountered in her day-to-day life and creating a comic strip or story about this is a massive help.

As she loves books and stories, we have read a lot together and discussed autistic characters we come across in books. This helps her see how she is similar to other neurodivergent people, because she struggles to relate to her peers who aren’t on the spectrum.

How look after myself

As my daughter was due to start school I took voluntary redundancy. I could no longer be the teacher I wanted to be as well as the mother my daughter needed. I was repeatedly burning out and couldn’t keep going.

I have taken a massive pay cut, but I am now a self-employed gardener. Working for myself and being able to juggle my work schedule around my daughters’ needs has had a very positive impact on my health.

Whilst working I listen to podcasts and these have really transformed my perspectives on many things.

I really look after myself now. I eat well, practise box breathing, do a strength and conditioning or mobility workout every morning, have a cold shower every day, volunteer at my daughter’s school and I have a massage once a month.

These are the things I needed to do so that I can show up in the world every day. Things aren’t always great, but I can recognise the signs when I am nearing burnout and I can usually get myself back on an even keel.

The changes I would like to see in the world

We are never going to get anywhere until people are properly educated about neurodivergence. There is still far too much ignorance and therefore stigma surrounding the neurodivergent community.

We need an education system that truly understands and embraces neurodivergence. Teachers need to be explicitly trained in what neurodivergence is, how to recognise it and how to support children who display traits related to it.

We need politicians who understand what it means to be neurodivergent.

We need media that gives a true reflection of what it is like to be neurodivergent (and not just show the extreme ends of the spectrum).

I am reluctant to share with people that I am neurodivergent because of the level of ignorance surrounding the subject. The media makes late diagnosis seem like a band wagon everyone is jumping on, rather than the lifeline it is for so many (mainly women) who have been struggling all their lives, but now understand why.

My hopes for the future

As a family, we are constantly educating ourselves about neurodivergence. Whenever we encounter an issue, we work together to find a way through. I hope we can continue to educate those around us and raise awareness of what neurodivergence truly is, so ignorance and stereotypical views become less and less prominent in society.

I hope that we find a secondary school as good as the primary school my daughter currently attends. One that listens to us and will be guided by us, so my daughter can be happy in her education.

I hope that we find a school that will see her for the amazing soul that she is.

I hope that the teenage years are kind to us and that we can navigate the tricky times and come out the other side, happy and healthy.