This article was written by a Qwell mental health writer, Milly. It contains the following themes: neurodiversity, advocating, accessing support, learning, and maintaining boundaries as a parent. Becoming a parent usually requires fulfilling a range of roles. For those with neurodivergent children, being an advocate is often one of the most crucial. Every brain is unique, and some people are referred to as ‘neurodivergent’ because their brains work differently compared to a neurotypical person.
We spoke with Mel, who’s a mum to two neurodivergent children, Larissa and Jay. Larissa, now an adult, was diagnosed with autism, attention deficit hyperactivity disorder (ADHD), and generalised anxiety disorder (GAD) at the age of eight. Jay, also now an adult, was nearly ten when he was diagnosed with autism.
Mel shares her experiences of advocating for Larissa and Jay, ensuring they could access appropriate support and education that accommodated their needs. She discusses the challenges of navigating a linear education system, and emphasises how crucial it was for her to gain the necessary knowledge to support her children effectively.
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Autism
: a spectrum disorder that impacts how people interact with others, learn, behave, and communicate. It’s often characterised by challenges with social communication and repetitive or restricted behaviours. Autism can vary greatly between individuals.
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ADHD
: a disorder that impacts behaviour. It’s marked by difficulties with attention, hyperactivity, and impulsiveness beyond what is typically observed for an individual’s age and development level.
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GAD
: a mental health condition characterised by persistent and excessive worry about various aspects of daily life, even if there is little logical reason to worry. This ongoing anxiety can be difficult to control and significantly interfere with everyday life.
*Mel, Larissa, and Jay are pseudonyms.
An adaptive mindset
“The school initially raised concerns for Jay and the specialist teacher who came to our house to work with Jay suspected Larissa may also be neurodivergent.
“I wasn’t in denial when we eventually found out their diagnoses. They’re still my children, so it didn’t matter to me. I try not to get down about stuff and focus more on what I can do about it. I took myself off to the library and read every book possible about ADHD and autism, and I watched a lot on the conditions. I’m very resilient and haven’t had the best life, so nothing really gets to me.
“For me, there’s no difference between a neurodiverse and a neurotypical child – all children will have difficulties and as a parent, you problem solve.”
A means to support
“We tried to keep things relatively normal for our kids so they didn’t feel different to other children. We waited until they were old enough to understand before telling them about their diagnoses. We explained that it’s just a word, and tried to make visits with specialists and doctors feel like something all kids did. “I didn’t want to label my children, but for me it was never a label, it was a means to support. Because of the diagnoses, we got financial support that allowed them amazing life experiences like horse riding, the scouts, and trips abroad away from mum and dad. This was really good for them and their development.”
A lack of awareness at school
“Unfortunately, the school wasn’t as supportive as they could’ve been. Jay was constantly getting told off for not looking at the teachers when they were talking, or for rocking on his chair – which was his way of self-regulating. Larissa used to rub herself on her chair as a way of self-soothing, and they eventually took away her chair and made her feel really embarrassed. “But being punished for these behaviours, which are traits of being neurodivergent, was really confusing. With all the sounds, noises, and movements at school, my children were trying to soothe and regulate themselves, yet they were getting called out for it. It made me cross.
“Some schools are really great, but when the focus is on results, exams, or Ofsted* inspections, it can sometimes feel like your neurodiverse child isn’t as important as the neurotypical children – who may get better results for the school or are easier to manage. But there is a much higher level of need in mainstream schools now, and there are lots of children who may have social, emotional, or learning difficulties. It’s important for schools to recognise that everyone is different.”
*Ofsted is the Office for Standards in Education, Children’s Services and Skills. This department inspects and regulates services that provide education and care.
Needing others to adapt
“As a parent, it’s not my role to be a teacher. Just because my children are neurodivergent and don’t learn in the same way as others, doesn’t mean that I should be stepping into that role or trying to change them. Neurodivergent children should be allowed equal opportunities and it’s important for teachers to understand that not every child will learn in the same way.
“I went into school one day with a book on autism and gave it to the teachers. I literally had tabs on the pages and said, ‘You need to read this’. As educators and people around children all the time, it’s important they know how to support my children or any child and their unique needs.”
“Everyone else involved with your child should be supporting them as best they can and it’s down to adults and teachers to learn to adapt.”
Equipped with knowledge
“What I’d say to other parents in my position is to learn as much as you can. You’re always going to support your children as their parent, but having that knowledge and information to back up what you’re saying really helps you advocate for your child’s needs.
“It also helps you understand more, too. So if you’re meeting a medical professional with your child, you know what they’re talking about and are able to ask the right questions. It can really help you to make informed choices and feel really engaged with your child’s care.
“I also found it helpful to learn about the things that doctors may not always tell you. Books and films helped me understand my child from an emotional perspective and the practicalities of living with neurodivergent children. Looking internally at myself and my past, and learning through other people with similar experiences, really helped in terms of parenting and understanding where my children might be coming from.
“Try to learn as much as possible in the way you learn best. It helps you to feel confident in your experiences as a parent which allows you to advocate for your child’s needs. Learning has really helped me to make a difference for Larissa and Jay.”
Further support
Everyone’s experience of parenting and neurodiversity is unique. While becoming well-informed and advocating for your children can be incredibly powerful, it can also feel very overwhelming and difficult at times. It’s normal for some days to feel better than others, and you may find it takes some time to build your confidence and experience in advocating for your children. It’s really important to look after yourself and remember that there are places where you can get support.
Whether you want to learn more about what it means to be neurodivergent, or find advice and guidance specific to you, there is a range of help available:
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[National Autistic Society (NAS)[(https://www.autism.org.uk/): provides information, parent-to-parent support, and advice services for those impacted by autism.
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ADHD Foundation: offers support and resources for individuals with ADHD, including educational resources and advocacy for families.
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British Dyslexia Association (BDA): provides information on dyslexia, assessments, and support services for parents and educators.
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Family Fund: provides grants for families raising disabled children and young people across the UK.
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SOS!SEN: offers a helpline, workshops, and advice sessions for parents navigating the education system with children who have special educational needs, including neurodivergent children.
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The Brain Charity: offers information, advice, and support for anyone based in the UK who has a neurological condition, as well as support for friends and family.
