Celebrating World Autism Acceptance Week: A parent’s journey with ASD 

As we celebrate World Autism Acceptance Week, parent Lizzie shares her experiences with her son Harry’s autism diagnosis

Welcome aboard the Good Ship Special Needs, please make your way to the Autism Deck. Your cruise will last a lifetime. All family members are welcome. Please be aware that your crossing will not be smooth. Expect turbulence, uncertainty, high levels of frustration and exhaustion. There will also be glimmers of hope, degrees of support and some progress. Please ignore passengers that ask you if you are sure you are on the right deck, or say things like “they don’t look autistic”. You have full permission to laugh at people who ask “will they get better” or “have they grown out of it”, and completely blank anyone who says “I’m a bit autistic too”. We will deal with them later… indeed won’t we all.

Sixteen years ago, my son burst into the world two weeks early. It was pretty obvious from the start that he was different. We have been cruising on the Good Ship Special Needs since he was diagnosed aged two.

Autism is rarely a stand-alone diagnosis. Over the years we have picked up several extra pieces of luggage on our travels – doctors like to use the word ‘comorbid’ which sends a shiver down even the most stoic spine. We now have access to the ADHD deck, the Tourette’s Suite, Sensory Processing Disorder Room and Chronic Anxiety Wing.

Occasionally, we come across familiar passengers but, more often than not, we are on our own. Just to compound your journey, you are highly unlikely to find another passenger with the same diagnoses. There will be similarities and glimmers of a connection but brace yourself as they rarely last long. Parents are, however, welcome to try to communicate via Facebook, WhatsApp and, if you get the chance, by speaking to each other, uninterrupted, for up to a maximum of ten minutes over a glass of wine. Inspiring Instagram pictures are always worth sharing; just don’t expect ‘immediate’ likes or comments.

Please don’t be fooled by the occasional day of calm seas and brilliant sunshine. We tend to hit stormy waters more often and the waves can be huge.

I trust you get the picture… My son is now 16. He has attended two special needs schools (with a 1:1 learning support) and been home-schooled for the last 4 years following a mental health crisis. I am very much hoping that he is going to be able to attend a college, part time, from September as part of his post-16 provision. I have learnt to accept him for what he is… disorganised, clumsy, forgetful, frustrating but, in equal measure, creative, funny and unique.

He is never going to do A Levels or get a place at university. A high-flying job in the city is highly unlikely, nor will he be a doctor or lawyer. Having a partner is going to be challenging for him, as he hates physical contact and struggles to show any interest in anything other than his favourite topics (film making, the Titanic, family trees and cemeteries). Music-wise, you are going to have to like Perry Como, Des O’Connor and Frank Sinatra. He might even share a bit of Max Bygraves with you if he really likes you.

Then there is his appearance… My son favours formal dressing. A pocket watch, wing collars, a tie, a belt on his trousers and everything securely tucked in. No hoodies or grunge in our house. Cleanly shaven and hair delicately smoothed into place every morning. He even sleeps in stripey old man pjs. He is strongly opinionated and often vocal, in a not always politically correct way, about his views. Thoughts in his head are very black and white, right or wrong and there is rarely a margin of movement. Challenging his opinions is akin to lighting a firework…

Gradually and over time, I have got used to other people’s scepticism – using off the hip expressions ranging from the basic “nope he’s not naughty, he has a condition” to “he might not look autistic to you but then you don’t look like a doctor to me”. Autism Mums can be a force to be reckoned with.

Hidden disabilities are challenged, scrutinised, and judged day in day out and it is bloody exhausting. You also come across the competitive Special Needs Mums, who will do their very best to convince you that their child is in a much worse place than yours etc. So much for solidarity… It can be a lonely and exhausting existence, but it is only at night, when I finally sit down after a long day, that I really feel it.

All of this is just the tip of the Iceberg – yup, I am back the with ship analogy, and does it really matter? I was ill-equipped for this Cruise when it set off and have done my very best to stick with it. Occasional feelings of flinging myself overboard have been countered with reason, large glasses of wine and chats with true friends. Some of my decisions have been disastrous. I have met some truly awful people along the way and felt utterly broken by the number of brick walls I have come up against when fighting to get my son the support he so richly deserves. I know all the special needs jargon, how to fill in a form and exactly how the System in England needs to be approached. It is nothing short of horrific to have to present your child as ‘neurodiverse’ when what you really want to do it tell people how fantastic his comic timing is or how he made me a hot chocolate and presented it with two of my favourite biscuits.

He adores his grandparents and brings them insurmountable joy. My love for him is visceral; his laughter infectious, and I am so very proud of what he has managed to achieve against all the odds.

But, it is hard not to compare his life with other teenagers. He doesn’t have a social life or big dreams… He is happy to plod along, doing things in his own time and own way.

The very crux of this is Acceptance. Do I crush his unique individuality and start to gently mould him into a typical teenager? And more importantly, could I? People around him would be more accepting, and he would be less vulnerable. But then he wouldn’t be my boy anymore – he would be a stereotype and the world is full of those. And who exactly would I be doing it for? Him or me? The way ahead isn’t going to be easy, but then if you had told me 16 years ago that I would be a single mother with a teenager with such complex needs, I’d have laughed. I certainly hadn’t planned a lifetime Cruise either.

Somehow, we keep moving forward for our children, in the hope that they might become just as normal in society as everyone else. We teach them that they are ok and can fit in when, in reality, they just don’t. Like all young people, they have to find their own way and we have to do our best to support them, cushion the blows and keep the momentum going.

Oh, and as a foot note, not all Autistic people are like Rain Main or brilliant at Maths.

Enjoy Education have worked with Lizzie and Harry since 2018. Harry began by working with a specialist mentor; this developed into a home-learning programme shaped around his interests, and has since expanded into a programme tailored towards Functional Skills Learning.

This year, Harry is sitting a few GCSE exams and we are now supporting him in his journey towards further education with a blended home-learning and BTEC programme.