Thinking Outside the Neurotypical Box

Meet Merlin. He’s Lucy's bright, beautiful son - who just happens to be autistic. If only he came with operating instructions…

Earlier this week I posted a piece about my son Julius’ autistic journey from being badly bullied at school to winning a main part in BBC’s medical drama Holby City. The piece has already had well over a million hits on my facebook page. I think the reason it struck a chord with people is because for once, here is a positive story about autism.

Parenting a child on the autism spectrum is as easy as skewering custard to a mid-air boomerang. I sometimes feel I didn’t give birth to my son but found him under a space ship and am raising him as my own. There is no Owner’s Manual. It’s like trying to put together a giant jigsaw puzzle without the benefit of the coloured photo on the box lid.

Jules was diagnosed with autism aged three. Battling bureaucracy to get educational help, facing up to school bullies, placating irate teachers, (putting an autistic child into mainstream school is as pointless as giving a fish a bath) apologising to judgmental parents, trying to explain to your cherished child why he’s different, yet instilling in him a sense of self worth – is it any wonder that the parents of a child with autism could qualify for a PH.D in angst.

Hey, if nail biting adventure is what we parents had been looking for, we would have tried jumping over the Grand Canyon on a motor bike or diving with sharks, right?

When the doctor made his diagnosis my darling son suddenly become a plant in a gloomy room and I knew that it was my job to pull him into the light. For days after that dark diagnosis, a San Andreas of fault lines ran through my psyche, coupled with an overwhelmingly protective lioness-type love, my claws curled inside me, waiting, watchful. One thing was clear, I had to stop my son from tumbling through a hole in the world, like Alice.

A mother’s first overwhelming emotion is denial. I bankrupted myself seeing every medical expert on the planet. I hate to think how many doctors’ children I’ve now put through University. My son had so many tests he must have thought he was being drafted into the elite moon mission astronaut programme. (When visiting a private doctor, be sure to note carefully where you leave your car, because you will probably have to sell it to pay off their astronomical bills.)

Then came guilt – the gift that just keeps on giving. Oh how I tortured myself. Was it something I ate whilst pregnant? Soft cheese? Sushi? Was it the glass of wine I shouldn’t have drunk in the final trimester? Was it something I should have drunk – like pureed beetroot? Was it something I didn’t eat? Organic tofu, perhaps? Or maybe I ate too much? I hadn’t just been eating for two, I had been eating for Pavarotti and his extended family… If only I’d feng shui-ed my aura in yogalates classes chanting to whale music like Gwyneth Paltrow and Organic Co.

Anger took over next, mostly towards the farcically solemn, flat-shoed educational psychologists with their expressionless expressions.  The way to recognise an expert is by the clipboard.  A parent needs United Nations headphones to decode what these clipboard-wielders are saying. For example, “Your son has global delays” – translates as  “You might as well put yourself up for adoption immediately because your child will never be normal.”

….Twenty two years later I now know that there is no such thing as normal and abnormal. Just ordinary and extraordinary. And that people on the autistic spectrum have a literal, lateral, tangential logic which is truly unique and charmingly disarming. My son lost his language aged thirteen months and then didn’t talk again till pre-school. But when he did start talking what he had to say was so interesting. “If onions make you cry, are there vegetables which make you happy?” he asked, aged four.  “What is the speed of dark?” he wanted to know aged five. Every day he asks me questions I can’t answer. His lack of filter also means that socially, I sweat more than Paris Hilton doing a sudoko!

With my son’s permission, I’ve written a novel based on my roller-coaster ride raising a child with autism. I hope the book is pithy but also witty – as no parent would survive this journey without strapping a comedic shock absorber to the brain.

What I’ve learnt from coming out in public about Jules’ autism is that trying to cope on your own, is as effective as standing up to Voldemort with a butter knife. In other words, it’s always better to shine a light into a dark corner. And embracing his condition has been the best thing Jules has ever done, as it’s led to a wonderful acting career. And thank you to the BBC and Holby City for thinking outside the neurotypical box. Let’s hope it inspires other employers to follow suit.

Meanwhile, autistic kids often end up with a self esteem lower than Kim Kardashian’s bikini line so it’s important that we never stop telling our children how truly special they are.

My son often tells me that he feels he’s drowning in his own brain waves. I wrote The Boy Who Fell To Earth as a kind of literary life raft. If you’ve enjoyed the pieces I’ve posted about Jules, I hope my little novel might also give some emotional sustenance and comedic succour.

Best wishes, Kathy

Click here to read some of the comments from my readers

6 Comments

  • Oh I laughed and then I cried, then broke out laughing again reading this. I’m about to start reading your book “the boy who fell to earth” I’m a mother of a 6yr old boy with autism, his intelligence is in the top 1% for his age which leaves me googling for answers to his questions. As a parent of an autism child I often feel lost trying to find the answers to help my son, like I’m looking for an object in the dark until I read or listen to another parent who has a child with autism, that is the moment I realise I’m not alone in this.

    Reply
  • Hi Kathy,

    I know that you most probably get an inbox full of emails from mothers thanking you for both your books the work that you have done raising awareness about neurodiversity. I too want to thank you.

    I also would like to raise an issue relating to both feminism and having a son who is not neurotypical. This is an issue that has been causing me much consternation. I have assumed from your gorgeous book “The Boy Who Fell to Earth” , that when your son was younger that he at times could be quite explosive and violent. I know that this is something that I am currently experiencing with my 13 year old son.

    Like the character in your book, I am a sole parent. I however, also have a daughter who is just 14 months older then my son who, like myself, has been the victim of his ‘meltdowns’. I am wondering how you dealt with episodes of violence such as hitting, threatening, punching holes in walls, kicking etc? I obviously understand the neurological basis for the behaviour, and that the sensory overload and frustration can tip over at times into what can only be described as violence. But this does not make it acceptable.

    Understanding the cause does not excuse the result.

    I get so torn when I think about intimate partner violence and the lives of women who live in fear because of violent partners. Yet, I also understand that my son is reactive, impulsive, and neurologically unable to process situations and when overwhelmed simply lashes out.

    I am very concerned about the impact that this is having on my daughter who literally lives in fear of saying or doing something that will ‘set him off’. How will this impact on her as she grows up? Will this make her vulnerable to choosing abusive partners? How can I both protect her from her brother yet still protect him?

    I refuse to allow him to grow up to become a violent man, particularly towards women. However, I am powerless at the moment to restrain him and curtail his aggression when it erupts.

    I have spent countless hours trying to access support for early intervention services to assist with young boys who behave violently yet there is literally no services available. The very few that I have been able to find have little to no understanding of behaviour that stems from a brain that is ‘neurodiverse’ and which subsequently does not respond to the strategies advised by the ‘support workers’.

    How can we as women, mothers, feminists, condemn all men who are violent towards women when I know my son will potentially be a perpetrator – unless there are services that can provide early intervention with clinicians who have training in neurodiversity and can actually help?

    Does it get better when our boys get older? How did you manage these issues?

    I am obviously pretty desperate to be writing to you – but hey, I have nothing to lose and there is always the chance that you may actually read this and perhaps, given your public profile, raise this as a dilemma and an issue that policy makers, service providers and even the White Ribbon Campaign should consider.

    How can I as a strong feminist be powerless to stop my 13 year old neurodiverse son from becoming a man who is abusive?

    If, by any chance, you have read this, I sincerely thank you.

    Your book made me cry, because it’s the first time I have ever read about a mum struggling to get her son out the door whilst being clawed and kicked and punched. Despite the wonderful ‘story’ and the humour, I felt validated that someone knew so much about what it’s REALLY like to have to deal with this nearly every day, that it was included in a novel. I can’t possibly tell you how much this meant.

    Kind regards

    Kerry

    Reply
  • Dear Kathy, I have just finished your book the boy who fell to earth, as I have two grandsons with autism it was so enlightening, I wish my son and daughter in law had had this book to help them through the rough times just to know how other people coped, but they are now 23 and 25 and the eldest boy is in a good job and loves it and the youngest is working in a workshop and is gainfully employed even though the tasks are not beyond his ability, they have built a room above their spare room for the youngest knowing he will be always with them. They are the most wonderful men it has been my pleasure to have ever known and I am the better to have had them in my life.

    Reply
  • Just heard your interview on Radio National Kathy. I have a colleague aged 50 something like me, who was always a bit unusual. I now know why. I think the spectrum needs acceptance, as in the old slogan ‘we’re different, but equal’.

    Reply
  • Hello kathy. I read your book about jules when it first came out and laughed and cried because i have not one but TWO granddaughters with asbergers. I live with them and my daughter and holley, now 13 was diagnosed aged3. As a baby she screamed , wouldnt go to anyone but mum and me and had huge social problems.thanks to her mother early intervention and hours of help paid off. She now has her own business, travels australia speaking at schools, has won a room full of awards for enviromental work, writes slam poetry, sings at gigs, plays drums and is goiung to meet the dai lama next weekend. Lilly was born 3years later and has different symptoms, is very clever ,writes amazing stories, has her own web page and reads at age15. She is 11. All of this shows with hard work lots of anguish, kids can rise up from the bottom to the top. Love your books. Roslyn knott

    Reply
  • I have just this minute finished reading g The Boy who Fell to Earth. I think your brain is hot wired for fun and you use it as your* coping with life* strategy. Loved the book, hate the term *special needs* because it could apply to you, to me, to everyone on the planet. Jules is lucky to have you as his Mum. Cheers to us all.

    Reply

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