Late diagnosis of neurodivergent women

As a child, you were always “too sensitive”, talked too much, and, according to your teachers, could do better if you just “applied” yourself. You were called a daydreamer, and when people asked what you were thinking about, you said… “nothing”. But it was never nothing, there were so many thoughts and lanes of traffic that you could not possibly explain. Your self-esteem plummeted, and you started to mask your true self in order to “act normal”. When you arrived home at the end of a school day, you either melted into tears, anger, and despair, or hid yourself away, numb and drained. Does this sound familiar? I know it is for me. My name is Gemma, and I am a therapeutic counsellor who happens to be autistic with ADHD (AuDHD).

If you are a woman and are neurodivergent in some way, for example, you are autistic, have ADHD, Dyslexia, Dyscalculia, Dyspraxia, Tourette's Syndrome, OCD or a combination of these, it is possible that your neurodivergence was missed. This is because neurodivergence often presents very differently in girls than it does in boys. And as mentioned earlier, many girls learn how to imitate more neurotypical behaviours in order to “fit in”. But this takes an emotional toll.

 When I was a child, I was obedient; I loved rules and structure, and I realised that being a “good girl” often meant praise, emotional peace, and safety. I was labelled as kind, shy, and compliant. But I was also labelled stupid and “borderline” in terms of grades. So, good and kind became my superpower within a world of criticism. I may not be academic, but at least I am a good friend. I may be messy, but at least I am loyal. I may not be organised, but at least I am fun. At least.

I am wondering how many of you were diagnosed with something else, like I was. At 14, I was told by a doctor that I may be depressed. I wasn’t sure if I was, all I knew was that I felt confused, frustrated, sad, and that seemingly normal tasks felt like Mount Everest.

Francesca Happé, a professor of cognitive neuroscience at King’s College and researcher into autism in women, stated that “autistic women may be suffering in silence, only getting diagnosed if they have additional problems”. Research has shown that “males with ASC are more likely to experience externalising difficulties such as hyperactivity and conduct problems, whereas females with ASC are more likely to experience internalising problems such as anxiety and depression”. Therefore, it is possible that depression and anxiety can exist in conjunction with autism or indeed ADHD and perhaps overshadow it.

As talk of neurodivergence builds on social media, in podcasts, within the set of your favourite comedian, you start to wonder, 'Am I neurodivergent? Was I missed?' You may have researched traits that led to such criticism as a child. You bravely seek out a diagnosis. So, what happens next?

The stages of grief, first identified by Elisabeth Kübler-Ross, may be relatable as your experience of diagnosis unfolds. It is also worth mentioning that these stages do not always happen in order. They are non-linear, and you can move between them.

1. Shock and denial: You have been labelled your whole life, often negatively, so to have a diagnosis that actually explains traits and behaviours can feel enormous. Imposter syndrome can also set in. You may be told “you don’t seem very neurodivergent” or “Everyone is a little bit neurodivergent these days, aren’t they?”.
2. Anger: Have you realised that you lived a life with little to no support? You struggled in School but were simply labelled as disruptive, too talkative or a daydreamer who could do better. Important people in your life may have missed this, and you have felt deeply misunderstood. You imagine how different life could have been.
3. Bargaining: Maybe the psychiatrist got it wrong? How can I turn back time? Bargaining for a different past. Or perhaps you are bargaining for a different life ahead. Treatment, like therapy or medication. This may be a long road ahead, but you may be ready to walk it.
4. Depression: You have a diagnosis; you have even started therapy and maybe medication. The road ahead looks long, and self-acceptance can feel hard. You still have a neurodivergent mind, and that can never change. The process can feel difficult and often lonely. Your family may still be coming to terms with your diagnosis, and you are wondering who will ever understand.
5. Acceptance: At this point, I think of one of my favourite quotes by Oscar Wilde, “Be yourself; everyone else is already taken.” You realise that even though life can be hard, neurodivergent traits are not failings; they exist within you no matter what. You have built coping mechanisms and advocate for your needs and support. This is often seen as the last stage in this process; however, it is not uncommon to cycle around these stages many times. Self-acceptance can be a long and bumpy road. But you have made it onto the road.

There are many avenues of support, and many neurodivergent people on the same path. Counselling can provide a non-judgemental and safe space to work through the grief of a late diagnosis. There are also meet-up groups like Neurodissidence Network and resources like the Hub of Hope. You are not alone.