Some time ago, I attended a parenting seminar. One of the main themes was how much conflict is caused because the parent and child’s mental image of each other is often very different from reality. If this is a common issue between most parents and their children, it is no great leap from there to see how having an neurodivergent child could cause even greater conflict between parent and child, especially if neither parent is neurodivergent.
As with many things in life, reality rarely matches imagination. Discovering your child is on the spectrum is not a disaster, nor is it a failure, but it does add worry to an already-stressful time. Raising any child is difficult. They could be the ‘perfect’ compliant child who sleeps, eats, and says please and thank you. But every new parent soon discovers that when you bring that bundle of perfection home, your lives have changed forever. Add neurodiversity into that scenario and it can be difficult to come to terms with.
I remember having coffee with a friend when my firstborn was 2 1⁄2. Her daughter of the same age sat quietly colouring whilst her mummy and I chatted. Unfortunately, rather than chat, what I did was try to get my son to eat something, stop him playing with the wheels of a stroller, and calm him from a meltdown because he wanted to be anywhere else. I don’t know exactly where, as the only words he could speak by that age were numbers.
I already suspected he was autistic at that point, but I found him… difficult. I was often embarrassed and ashamed that he wouldn’t sit quietly but would climb everything, scream about the tiniest thing, and play with light switches over and over. Why did he have to attract the attention and judgement of everyone around us? Parenting a child with sensory, processing, and emotional challenges (which affect all autistic children to varying degrees) makes life so damn hard some days.
To further complicate matters, we all view our kids through the lens of our own childhoods – relationships with our own parents, behaviour expectations, ‘seen but not heard’ mentality, and the expectation of blind obedience in your own children can be difficult to bypass.
So, where can you go from here? How can you learn to let go of the child you expected to have, the image of the child you dreamed of, and come to accept and love the child you actually have? There is no right or wrong way, but there are a number of things you can do to help.
Acknowledge the child you thought you’d have.
Whether or not your child is autistic, until you can acknowledge the image in your head of the child you expected to have, you will always compare your actual child to that image. No child can match up to unknown expectations, but it’s important to recognise what those expectations were before you can fully appreciate what you have.
When I first became a parent, it was hard to remember that children have their own feelings, opinions, and needs– how dare they! It wasn’t until a friend with older children said, “Until you learn to accept changes and roll with them, you will always find things harder than they need to be.” She was absolutely right, and this applies even more with children on the spectrum.
Acknowledge the child you actually have
You might, as I did, have had inklings that things were not as you expected early on in your child’s life– delayed speech, lack of eye contact, frequent ‘tantrums,’ or any number of traits that can indicate neurodivergence, as well as sensory sensitivities towards noise, light, tastes, textures, etc.
Accepting that these are your child’s needs and preferences can be very difficult, especially when they often come hand in hand with lack of sleep on your part and very emotional outbursts from your child. But these needs won’t go away if you ignore them. Worse, trying to enforce your preferences, or hide ‘undesirable’ traits will certainly cause frustration and upset for both of you, and can cause lifelong anxieties, stress, trauma, and mental health difficulties for your child.
You might not like their quirks, and often won’t, but the process of consciously acknowledging that these are this child’s needs, especially when they very different to what you expected in your children, can only work to the good.
Learn about your child’s needs
Once you have a clear grasp of the specific wants and needs of your child, you will slowly start to learn what can help them. This knowledge comes about in a number of ways – research, experience, and trial-and-error. Anything that helps you learn more about how your child experiences the world the easier will help you.
Sensory triggers can cause a lot of distress to autistic people. What sensory triggers cause the most difficulties for your child? Lights, noise, sensations? When you know which things cause problems, you can find a path towards minimising that distress. Low lighting? Ear defenders? Removing clothing labels? This might not be what you wanted for your child, but as you learn this child, you will see that small adjustments here or there can help their way through a world that is not designed for them.
Remember– no child is naturally or maliciously manipulative. If a child is expressing extreme distress, then it is important to believe them. That way you can begin to minimise or remove the cause of distress if at all possible. They may have difficulty expressing themselves but their behaviour can tell you a great deal, and they are communicating in the only way they are capable at that time.
Bask in the wonderful child you have
Your child might not be able to communicate verbally, but they may have a natural affinity with animals. They might not be able to voice the feelings or events in their head, but they may be able to create and inhabit amazing worlds online. They might find certain clothing impossible to wear, but they might find joy in sensations, textures, and fabrics.
Not every child on the spectrum has savant skills. Every child is unique and their personal superpowers may not be able to calculate Pi to the millionth decimal, but every child has so many skills and talents when given half a chance. Look for them, encourage and enable their growth, help then expand their special interests, help them grow into the people they were born to be.
Seek out and accept whatever help you can.
Partners, family, friends, playgroups, the cleaning lady – take whatever you can get. “It takes a village to raise a child” is truer than you can imagine and sadly in today’s society where the physical, multigenerational village is no longer there, we have to try to find one where we can.
There are many safe islands to be found online that are filled with parents going through the same thing, who are more than willing to listen, suggest solutions or virtually hold your hand. Find them and use them but I beg you, please seek support in places that are truly inclusive and contain and listen to people who are actually autistic. The advice and support you receive from those who have actually been the child you are trying to raise will be infinitely more beneficial to you and your child.
Sadly, groups of predominantly-neurotypical ‘autism warriors’ or ‘my child’s voice’, rarely speak for and often deliberately ignore the voice of actually autistic people. At the very least please avoid any suggestions of ABA or potential ‘cures’ for autism and please do not post videos or pictures of your child mid-meltdown online as they are unnecessary, cruel, and can cause so much harm.
Look after yourself
Cliché or not — you cannot pour from an empty cup. If you are running on empty, you cannot give anywhere near your best. Get as much sleep as you possibly can (I know how hard this can be). Beg, borrow, or steal it if you can. Ask for help if you are struggling. Be it from friends, family, GP, charities, schools, or whomever. I know asking for help isn’t easy and we’ve all met people who are supposed to help but end up being judgemental or unhelpful, but there are people out there willing to help.
It can be a fight, there can be no denying it, but when the right things are in place for your child – the joy in watching them fly is worth every single battle. Remember though, you cannot keep fighting if you are running on empty.
Celebrate your and your child’s successes. Don’t sweat the small stuff, pick your battles at home and remember we are all winging it. There are no instruction manuals and you are by no means alone, no matter how lonely you can feel. If you can find a tiny amount of peace for 15 minutes in silence, or with a cuppa and a warm blanket, or a quick natter with a friend online, any self-care you can give yourself is worth all the effort it takes to carve out the time.
Try to see the world through their eyes.
There are some autistic traits that can make life pretty tough, but there so many wonderful things about the autistic brain that aren’t hard to find. Neurodivergent brains are super sensitive. They can pick out the minutiae – an individual bird’s song in a busy city centre, Where’s Wally (or Waldo for my American cousins) in 10 seconds flat, the smell of a scented flower a block away.
There is beauty and joy to be found in the mind of an autistic person. If you can see the wonder of the world through their eyes for only a moment, this can do wonders to help you accept and understand the world they live in. It might not be what you expected, or even what you wished for, but it isn’t all bad. Not by a long way.
Nothing about autism is easy sailing – we live in a neurotypical world, made for and by neurotypical people, but you can find the beauty in your child – it is never buried too deep. Their logical thinking, lack of ego, dedication and commitment to special interests, lack of pretense or falseness, incredible memory, innocence, and acceptance of face value. Whatever it is, it is there.
You may feel the need to grieve for the child you feel you missed out on, you may feel horrible guilt at feelings of disappointment, or despair. These feelings are not unusual or wrong. Feel the feelings, name them, accept them, and then put them aside. You may have expected a holiday in the Maldives and ended up diverted to the Lake District. It may be unexpected, even a disappointment when you were so looking forward to a warm sandy beach, but there is so much beauty there nonetheless.