Autism and Accepting the Child You Have8 min read

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 12. 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.

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