Monthly Archives: April 2024

Today is world Autism day and I thought it was about time that I shared my personal journey with Autism. Two years ago my son (then 10 years old) was, diagnosed Autism level 1. Autism Level 1 is what a lot of people may know a Asperger’s, it’s the level that requires little support from an educational needs point of view. I will refer to it  ASC throughout this post, Autism Spectrum Condition, I’m not a fan acronym ASD as I don’t see it as a disorder, we certainly don’t treat it that was in our house.

Oscars traits were there since he was a baby. I tried to introduce Oscar to a bottle at 6 months however he refused, as he got older he also refused food, Oscar didn’t really even start eating solid food really until he was about 3. Even then his diet was and still is so limited, he will physically gag at just the smell of fruit.  Then noise, Oscar could hear noises most people couldn’t or wouldn’t notice, some could scare him and some would irritate him. Then there was light, Oscar can’t stand bright light, he prefers a cloudy day to blue skies and sunshine. From a young age he would often have meltdowns, strong emotional reactions caused by overwhelm and over stimulation. Being highly sensitive is a trait of autism.

Then he has his special interests, first it was planes  when he was about 3 year old he had so many toy planes, he was able to recognise airlines and models. Then there was sea creature’s, this was my favourite one and I got obsessed with that too, we really did share that special interest.  I remember Oscar at pre-school age being absolutely obsessed with whales and squids, he could tell you every species and the explain the differences between them.  I clearly remember him searching stories on YouTube of epic battles between Sperm Whales and Colossal Squids (it happens, it’s fascinating).  Then next it was Dinosaurs, in fact this one stayed. When you take Oscar to The Natural History Museum, he will give you a guided tour without reading any of the descriptions he can tell you from a skeleton what dinosaur it is, when period it was from (Jurassic, Triassic etc), where it lived and what it ate.

He is now 12 year old and his number one special interest is the universe and he is obsessed, and whatever he becomes obsessed with he becomes an expert in, he can explain physics and space, time continuum stuff the things most of us can’t even nearly grasp. He is an artist and loves to draw and make models, always of whatever his special interests are. At pre-school he would surprise the pre-school teachers of his extremely accurate models of whales he got size ratio spot on.. In fact inaccuracies’ in these things really irritate him, although he loves the Jurassic Park films he is highly critical of the inaccuracies in the dinosaurs and how they are portrayed for the films. He is a talented musician and he loves to play the guitar.

When Oscar was very young, his dad would say that he thought Oscar was on the spectrum I would simply brush it off, why do we need to give him a label he just a bit different a bit quirky in fact he could be just like me, is what I would say..

Oscar is brilliant there is was nothing “wrong” with him. But then as he got older it become apparent that the world and the educational system isn’t really structured for those that are a bit different or “extraordinary” as we say. Don’t get me started on the educational system (that’s a post in its own right), it really is a one size fits all approach which in my opinion isn’t best for any child not just the neuro diverse.  I believe all children  have their strengths but our system only seems to value a handful of attributes, it doesn’t cater for passions and special interests, great all-rounders isn’t often coined to the key to success when you reach adulthood but it is what we push on our kids. The people who have really changed things, are those that have been led by their passions and become so obsessed with them that they can’t leave them alone.

Then there was arguments in the playground, as the teachers reported back Oscar would want to dominate the play. This seemed odd to me as Oscar isn’t particularly a dominant kind of child but as the diagnosis report later stated, Oscar can have a single track mind which make the reciprocal play difficult for him, he gets an idea and he will just run with it. These traits in adults are often admired as determination and strong willed but in school not so much.

Often when social differences came up, the schools action would be to try and force Oscar into even more social activity, he would get extremely tired in the afternoons and would either be falling asleep or having a meltdown,  which was treated as behavioural or they assumed he wasn’t getting enough sleep. When actually all he needed  was a bit of quiet time, to sit in the corner alone with his sketch book.

To me it became apparent that the world around him was negatively affecting him, it not allowing him to just be himself, not accepting him as him. The world views differences as wrong and in my opinion it failed to recognise the brilliance in this boy. The feedback the world was giving him was that there was something wrong with him and that he should be more like the other children.

It was at that point that I decided to pursue a diagnosis. It took me less than a year to get him diagnosed, the school didn’t understand it, many in the educational systems don’t especially ASC 1. They are more used to recognising ASC Level 2 and ASC Level 3 as these are the children that will need much greater support in life and in education.  Most children with ASC level 1 don’t need a great need of additional support but they do need a great deal of awareness and hopefully from awareness comes understanding. When we started the diagnosis process I remember one teacher saying to me, well it’s not always good to put labels on children, which is what I believed a few years earlier.

I know my son has the greatest potential, I believe one day he can change the world. But I also believe that the system could easily knock that spark out of him, it could undermine him, and could make him feel like he is a bit weird and a bit too different and flawed in some way. That is why I decided to get him diagnosed. During the diagnosis process, I realised that there was a very strong chance I was on the spectrum too.  It was funny because when I got onto it, I got on it, autism and Oscars diagnosis became my special interest, the obsession that I would not let drop. I managed to get him assessed and diagnosed in less than a year on the NHS, school and other SENDs parents have told me that is pretty much unheard of. My determination came through, I couldn’t let it go and I had to understand it.

The day Oscars diagnosis came through I remember crying, it was what I had hoped for but at the same time it was real, those words of the teacher and rang back in my ears about whether it was healthy to give children a label. I questioned whether I had done the right thing.

But two years on and I have to say I am so glad that we got that diagnosis and it really helps us to understand, not just Oscars traits but also how neurotypicals minds work too, if I am honest that has baffled me my whole life too. Oscar is different and he really owns those differences, at parents evening his maths teacher nailed it, she said,  “Oscar is just himself, he is so happy in his own skin, which is very rare, he is just Oscar and he is brilliant and I hope he just stays that way”. His science teacher said she has never met a child so passionate and engaged in science and again similar from his art teacher. In fact I think Oscar started an art and science club, his art class finishes at lunch time and instead of wanting to go to lunch he carried on, drawing pictures of the universe and black holes. A few other kids started to stay too, so after Christmas Oscar announces how lucky he is they have put on a Art and Science club, coincidently in the same day and classroom he stays every Monday lunch to sketch pictures of the universe.

We are careful with the language, we  use words like extraordinary and I remind him all the best people are and who wants to be ordinary?  We are able to recognise his “super powers “, and accept the challenges he  has and that is much easier with understanding. Now we can plan strategies to ensure that they don’t stop him.

A friend of mine who is a brilliant gifted “Aspie” as he referred to himself, told me it is a superpower. In-fact it was this friend that first recognised these traits in me.  Last Tuesday I got referred for an assessment in Autism and ADHD. In the meantime I am self-diagnosed, which is absolutely acceptable in the autism community.

The super power traits I have include determination, not wanting to put something down, it helps me to problem solve. I have a way of seeing how things connect, and have been told I am like the thread that joins everything up. I am obsessed with the truth and what is right and wrong and I get very  upset by injustice, this has drawn me into the world of activism. I do see myself now as a change agent and this runs in my work and out of work pursuits.

However I have my challenges, when I focus it can be to the point of obsession and at the cost of other things, now I have routines to help me with that. One of the things I can struggle with is communications and I recognised I have a bit of speech disfluency, I can be repetitive in what I say, I’m also brutally honest (as a friend once put it), and sometime drill a point a bit too much. I used to burn out lots, now I recognise this as over stimulation and overwhelm and I ensure I get out of my mind regularly, in a healthy way through mediation and through nature.

Since I was a child nature has always been a obsession of mine, my lifetime special interest. In fact it came as no surprise whatsoever to find out that Chris Packham was autistic, he was my first crush,  The Really Wild Show was my favourite show, when I was a kid!

Oscar and I, are in good company I reckon. The people that don’t fit into the box change the box, they break the box! Some of the most brilliant people are autistic. Elon Musk, Bill Gates, Albert Einstein (is thought to have been), along with many scientists, Dan Akroyd, Tim Burton, Chris Packham and Greta Thunberg (she is brilliant)…

My daughter displays strong traits and I will embark at getting her assessed too, the gender gap is wide in autism too only 1 in 4 diagnoses are female even though in reality it is 50:50, there are a few theories are to why this is, one is females are better at masking and fitting in from a young age. I know I spent my whole life trying to mask and I certainly would not recommend it – that’s its own post too, maybe for next year :). The other factor is that the early research primarily focussed on boys and so their traits are more recognisable, as it can look slightly different in girls.

As I learn more about neuro diversity I am starting to love it, and even love it about myself and I am certainly more confident leaning into my super powers!  That certainly hasn’t always been the case. I want to ask you to all do the same, think about the neuro diverse people in your workplace, how can you make your work place more inclusive to neuro diversity? If you do this it will pay off there is a whole spectrum of talent there just waiting for the right conditions to shine. When they shine they can change the world around them.