Parenting children with neurodiverse needs: with or without a diagnosis

By Eve Bent, a neurodivergent mother of four, with two autistic children and over fifteen years working with children of all abilities, including working in research helping autistic children with sleep disturbances. Find Eve’s book here: No Labels Here.

Why did you feel it was important to write No Labels Here?

So, there are two parts to this answer really. The first is because of my lived experience and academic background.

As a mother of four children with neurodiverse needs I have experienced many of the ups and downs other SEND parents have experience. However, with the benefit and insight of a degree in children’s learning and development and another in Psychology (specialising in developmental psychology) it has given me a unique view into the needs of neurodiverse children and the ways we can support them – and their families.

Its not all academic though. As a neurodivergent person myself, raising other neurodivergent tiny humans, I’m acutely aware of the difficulties that can present themselves everyday – often completely out of the blue and without what seems to be rhyme or reason. So as a mother, with some experience of this world, I felt it would be useful to put some of that sage advice that’s been passed onto me; some of the trial and error (and you will see sometimes it definitely turns into more error than success!) and some of those underlying principles of psychology and child development into a book to help other parents try and navigate this often difficult journey.

The second point to this answer relates to the state of the waiting lists for diagnosis in many countries across the world. For example, in the UK, there has been a significant increase in numbers of children waiting for an autism assessment over recent years. The rise in autism education, understanding and acceptance had led to an increase in parents seeking diagnosis for their children. This is a positive step in the understanding of our children in their younger years; however, without the infrastructure to support the numbers of children waiting for diagnosis – children and families are living in limbo without support for significant periods of their lives. The numbers are similar for those seeking a diagnosis of ADHD with some of the longest waiting times being 6-years. Other neurodiverse conditions, such as dyslexia and dyscalculia, often get overlooked within education systems due to the lack of funding for testing.

The picture isn’t much better oversees with many facing similar waiting times in the USA and Australia. Children and their parents are being left without support of guidance on how to deal with the day-to-day issues that they are facing. Often causing both children and parents to become overwhelmed and at breaking point before they have even reached the point of their first appointments. 

How can the book help with that (often) long waiting period before diagnosis?

No Labels Here: A day-to-day guide for parenting neurodiverse children looks at the challenges parents have throughout the day with their children who may have additional needs but haven’t yet been diagnosed. The book flows from getting up and dressed in the mornings, through to school/nursery, evening times, eating meals, going out on trips… the dreaded bedtime(!) and the importance of looking after yourself in all of this. 

The book has been written this way so you can either read the whole book in one go, or, you can dip in and out of the chapters where you are currently needing advice for your children. Using a background in Child Development and Psychology, I have tried to explain the neurological reasons behind some of our children’s responses. Sometimes, understanding the reasons why our children are acting out can help us in managing the situation better. However, as a parent of four, I have first-hand experience of these things not working and having to muddle through the best way we can. The book hopes to shine a light on the fact we are all trying to get through parenting children with neurodiverse needs the best way we can, sometimes this works and other times it doesn’t – and that’s okay. And whilst you’re waiting for that elusive diagnosis, or even if you have it, there are actual tangible suggestions to help with specific situations – often missing in the diagnosis and post support process.

I’ve tried to make the book as fun, open and honest as possible. So, throughout the book I refer to anecdotes of our own experiences with many of the topics. I hope that by sharing these, other families can feel seen and understood in their journey.

What are your main takeaways for parents supporting neurodivergent children?

My hope for No Labels Here is that parents can feel empowered to support their children in their needs and their diagnostic journey and feel seen, heard and respected. They are the experts on their children.

Parts of the book relate to giving guidance on practical elements of parenting, such as, placing visual cues on the door to leave your home “Bag, books, homework, lunch” – a physical and unmissable reminder for you child before they leave for school or tips to get your child out of the door and off to school in the morning with the use of routines, now and next and transitional jobs.

It even covers the steps needed to get that illusive Education, health, care plan for your child (also known as IEP in some countries); and what support that can open up for your child within the education system.

One of the themes running through the book relates to finding your support system. Parenting a child with a neurodiverse profile can be a challenge. As much as we love our babies, it is often the systems that we must fight and challenge for them that can wear us down. Knowing that they need us to advocate for them is a big responsibility and often-times, a lot to manage. That’s why No Labels Here discusses the importance of finding your support system; whether this be in-person or an online community. By sharing our experiences, our knowledge, our wins and our losses; we can all help each other in navigating this difficult parenting journey.

Parents are invited to share our journey further by following us on Instagram, Tiktok and threads; @neurodiversity_and_us

Read more about No Labels Here by Eve Bent here.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.