Parenting Neurodivergent Children: The Emotional Toll of Society’s Expectations

Last week, I read an article about a recent interview MasterChef judge Gregg Wallace gave in The Times where he described his experience of finding out that his son is autistic. He explained going through, “A period of almost like mourning.” I’ve had many similar conversations with parents, where finding out that their child has additional needs has triggered feelings of extreme loss. It makes me question why, in today’s society, we still associate the idea of a child being different to emotions of grief and sorrow. Parents only want what’s best for their child, so what is so wrong in the world around us that this grieving process seems to be inevitable?

When expectant parents find out they are pregnant and excitedly start planning for their new arrival, they often have an idea in their minds of what their baby’s future might look like. “I hope he has his father’s brains,” or “The kick is strong – I bet she’ll be a good footballer.” Never in these conversations have I heard a parent-to-be say, “I think they’re going to need extra help at school because they’ll find learning really hard,” or, “I bet they’ll have really serious sensory needs and find it hard to leave their bedroom.” When we have ideas about who a child may turn out to be, it’s very natural to experience intense emotional reactions when these expectations don’t become the reality. But why do we have these expectations in the first place?

I once worked with a family whose son had a great sense of humour. He was friendly and chatty, and he loved talking about volcanoes. During a meeting at school, his mother told me that it took several days after her son was born for anyone to congratulate her. Everyone else’s reactions to her baby’s birth were sympathetic and supportive, but not congratulatory. Why? Because her little boy had Down syndrome. This mother told me that, regardless of her own feelings, the hardest thing she remembers from that time was dealing with everyone else’s expectation that she would, or perhaps should, feel sad. This mother’s experience shows how widespread the issue of accepting and embracing difference is. How can we encourage parents to be proud of their child and accept them for who they are in a society that expects them to feel the complete opposite?

When I worked as a SENCO, more often than not, the hardest conversations I had with parents were the first ones, the ones where I shared the ‘initial concerns’. Those were the calls I wished I could avoid. Sometimes, I’d find a teacher who’d spoken to those parents before to discuss what approach to take or try to figure out if I could predict their reaction in advance. The child may have been showing signs of dyslexia or ADHD, but somehow it felt like I was about to share the most terrible news and tear their whole world apart.

Conversations with other professionals seemed to follow the same trend as those with parents. I vividly recall one particular phone call with a CAMHS practitioner discussing a young person with autistic traits. The parents knew we had concerns at school and had agreed to the CAMHS referral, but the practitioner asked me whether we’d explicitly used the word ‘autism’. I explained that we were waiting for her professional opinion first. Her response was, “Well that’s going to be a difficult conversation for one of us to have, isn’t it.” In all honestly, she was totally correct in what she was saying, but if a SENCO and a CAMHS psychologist couldn’t have a positive conversation with a parent about the possibility of their child being neurodivergent then I’m pretty sure it said far more about us than it did about the parents…

Experience had taught me how these conversations were likely to go. I’d heard so many different responses ranging from, “But it wasn’t supposed to be like this,” to, “But I already have one autistic child, I can’t cope with another one,” and even, “I wish I could just pay someone to make all this go away.” These emotional reactions take us back to the issue of our narrow expectations and lack of awareness about how ‘different’ doesn’t have to mean ‘worse’.

I’ve always enjoyed the work I do and I have nothing but care and respect for the young people I work with. Why, then, was it so challenging to speak to parents about their child? When I think about it, talking about the child themselves was never the issue. There was certainly no shortage of positive things to say: their kind nature, the warmth they brought to those around them, their creativity or remarkable ability to think outside the box. The hard part was discussing the support they needed, or might need in the future, and trying to find some way to reassure a worried parent that their child would somehow find their own way in a world that just isn’t made for people like them. So when it comes down to it, the problem is not with the child at all, it's with society.

So what can we say to parents? How can we reassure them? How can we help them adjust to a different life for their child? And what can we do to help create a society where having a ‘different’ life doesn’t equate to having a ‘worse’ life? I’m pretty sure there’s no right answer to this question but there are some things that, in my experience, can at least offer some comfort and guidance.

1.    Your emotions are valid.

We say this to children when we talk about mental health and emotional regulation but, for some reason, we don’t say it to parents very often. It’s ok to feel sad and it’s ok to be worried. Feeling these emotions doesn’t mean that you love your child any less – anyway, the likelihood is that your feelings are more related to the world your child lives in than your child themselves. Also, whether triggered by your own or other people’s expectations, it’s perfectly normal to experience intense emotions when you find out your child is going to need additional support. It’s normal to worry about them more than you might have if you’d had a neurotypical child. Again, it says far more about society than it does about your child.

2.    No-one is expecting you to have all the answers.

Being a parent is challenging at the best of times and no-one teaches you how to do it. But having a child with additional needs, whether it’s a physical disability, mental health difficulty or learning need, comes with even greater challenges that practically no parent is prepared for. Not having the answers doesn’t make you a bad parent. On the other hand, asking the questions and wanting to learn makes you an amazing parent.

 3.    Allow yourself to reconsider how you define success.

Society has taught us that to be successful, we need to be high achieving – high academic grades, high power, high earnings. But does this all really bring a genuinely contented life? I don’t mean to say that it’s meaningless to have these aspirations, and just because a child has special educational needs doesn’t mean we shouldn’t aspire for them, but it’s worth questioning whether these are the markers that really define a happy and successful life. I’m not sure that every person with a PhD or a million dollars in the bank is necessarily happy.

4.    Get support.

This goes for you as a parent as well as your child. For them, evidence has proven that early intervention leads to more positive long-term outcomes. So don’t wait – ask the school to make referrals for the right therapies, get your child on waiting lists and don’t be afraid to fight for anything you think they need.  

For yourself, build a support network around you. Ask at the school, library, GP and places in your local community. There is so much support out there and having people to talk to who understand what you’re going through is important. Use online spaces too – Facebook has an abundance of parent support groups.

5.    Allow your child to ‘unmask’ at home.

Whether we like it or not, we all live in a world right now that’s designed to suit neurotypicals. To a certain extent, anyone with any other type of brain is going to try to act more neurotypical in some spaces and it’s going to be exhausting. It might help them fit in and, sadly, it might make life easier at the time, but it isn’t going to allow them to be at their best. There’s a reason the likes of Richard Branson and Bill Gates achieved so much more when they were out of school… Make sure home is a place where your child feels safe to be themselves. It’s important for secure emotional attachments, so they know you love them for who they are, and it’s the best way to let their strengths shine out.

6.    Accept that there is still a stigma.

There are so many people working to change attitudes towards neurodiversity and disability – professionals, parents, advocates, charities, other interested parties… But there’s no quick fix (and programmes like the BBC’s recent Panorama exposé on ADHD clinics definitely doesn’t help the cause!). Prepare yourself for some of the misconceptions and negative stereotypes out there but, at the same time, don’t be afraid to challenge bias and misinformation when you come across them.

7.    Be proud of who your child is.

It’s ok if this takes some time, especially when the world around you expects something different. Remember that we’re all working to create a more inclusive world, one that recognises every child’s worth and the contribution they can make when given the right environment to thrive. Every child is worthy of pride and being part of this community that is fighting for a more inclusive society is something to be proud of too.