Recently I had the pleasure of talking to one of my adult daughter's friends as we took a walk in the countryside. She's only just left home and is navigating medical school.
This lovely young woman has a few medical issues of her own and she had sought opinions from the internet (of course!), her parents, her GP, a lecturer and a specialist.
Having read widely on the subject and given it a great deal of thought over several years she was beginning to see the nuances of her problem and she was frustrated that her parents, GP and the specialist all had different conclusions and none that fitted her experience.
She was waiting to get a second opinion from another specialist and yet people were telling her not to keep searching, to accept diagnoses she felt not to be true.
It was a hard situation because these were people she really valued and looked up to and she is training to become part of the medical institution, which is built on respecting the knowledge, qualifications and experience of your elders and superiors. On the one hand she had already bought into a system that said the doctor knows better and yet something about the way in which she was being dealt with wasn't sitting right with her. The verdict so far hadn't rung true.
She explained both her personal experience of the problem and her findings to me and it all sounded logical.
I said, 'you know what? I've come to the conclusion over the last few years that when it comes to ourselves, other people's opinions and diagnoses are not to be trusted above our own inner knowing.'
She looked up at me then.
I told her how my own mother had been told for months there was nothing wrong with her by her GP when it had actually been a reoccurrence of cancer.
How another time she'd had a skin cancer legion on her leg only to be told by a doctor that it wasn't and not to google it as she'd just scare herself. She insisted on a second opinion from dermatology and it had indeed been skin cancer and been removed. So 'experts' don't always get things right. It's important to listen to what they say and then evaluate it ourselves.
Many of us are brought up to bow to authority and to believe experts know better, but that isn't always the case. Diagnoses doctors give are still subjective to their experience.
I said to my daughter's friend, 'I believe you. I believe the experts haven't got to the bottom of this and I believe that having looked into it in great depth you know yourself better than them. You don't have to accept their diagnosis. You take each bit of information and add it to what you know. You are the only expert of yourself. And if you think you need another opinion, you should get it. Keep getting them. Keep being curious and piecing it together until you feel that you have got to the bottom of it.'
The look on her face was priceless. I saw something click into place, a new realisation that despite her age, what she thought herself about her problem was the most valid.
It wasn't just my mother's experiences that led me to this way of thinking. It's also come from being a mother to neurodiverse children. I've learned that you must be open and curious, to observe over time what triggers your children, what soothes them and to understand those things about yourself.
I've read countless books, done some courses and listened to hours of podcasts on the subjects of neurodiversity, communication strategies, mental health and healing practices. I have to say that a good few of those resources were created by people who claimed to be on the other side, having solved their problems or from a professional background. They often made me feel more inadequate and overwhelmed by the task.
I’m not an expert in neurodiversity.
But nor can anyone be in my opinion. Of all the neurodiverse people I’ve ever met, every one of them is an individual. Their needs, interests and behaviours have occasionally overlapped but also been utterly different. And so, it makes sense to me that we should only ever expect to be an expert of ourselves and to guide our children to be the expert of themselves through exploration.
In that aspect I am experienced and along the way I have established many coping strategies for keeping balanced amidst day-to-day life, in an often dysregulated, neurodiverse family. I've got to the core of how as parents we re-discover our buried sense of self, take care of our needs and feel alive inside despite what can be a chaotic and overwhelming family experience.
I am not nailing this. I am in the thick of it, with you. But from time to time when I can get my head above water, I manage to course correct. I ask myself and my family a lot of questions and I get curious about the answers and each time things get a little clearer and a little better for everyone.
On this journey, and often in unusual places that don’t directly relate to the ways of the brain or parenting, I have picked up some actually useful techniques, little gems, that I continuously call upon.
I’ve shared these ideas with my friends and now I'm collecting them together to create a wellbeing journal especially for parents of neurodiverse children. It's currently being edited but if you sign up to my newsletter I'll send you a little reminder when it's available in bookshops and online.
Meanwhile, join my community. You can listen to my Insight Timer meditations (for free!), come to my in-person sessions if you live in Devon or simply follow me on Instagram. You're not alone. Lou xx