There’s a lot of misunderstanding about Autism and as it’s Autism Awareness Week I wanted to share a personal, perhaps different perspective on it. My view is quite different from what I thought I knew about Autism 7 years ago when my children were born. Autism is often considered a Disorder or Disability and it certainly can be those things but it’s so much more than that for me and my family. I know Autism can be a difficult subject to discuss as so many people are affected in different ways and it can be very disabling for some. But this is my views and personal to my life rather than an educational piece on Autism and I’m keen to stress that as people all have their own story.
I always had trouble making friends, I have memories as far back as nursery of playing on my own outside while other kids played in groups. I was described throughout my childhood as ‘excruciatingly shy’, ‘reserved’, and ‘introverted’. I have strong memories of being in nursery and infants and just being on my own. In Primary School, playtimes were different for me than the other kids. I spent them watching the birds, the airplanes fly over and the other children playing. I remember hardly ever talking to anyone. (I think I’m making up for my earlier silence now 😂).
One day I watched a big group playing a game in a circle and it looked so much fun. It ignited something in me, a real urge to be part of it. The problem was my nerves were so intense I struggled to pluck up the courage to do it until one day I stood up and nervously walked over. But then all sorts of questions popped in my head – Who do I ask? Where do I stand when I ask? What if they don’t hear me? What if I trip up? What do I actually say?
I approached the popular boy in the middle who seemed to be in charge of the game and I quietly asked if I could play. As nervous as I was, I was so proud, I made it there and I asked, it had taken months for me to reach this point and I finally did it! I never factored in that the answer would be anything other than yes. But unfortunately it was a lot worse than just a no. I got a reason with it too. “No you can’t play, no P*k!s allowed!”. Everyone laughed.
That was 38 years ago and I can still remember the feeling I got at that moment. The shock, the humiliation, the anger. It’s a real physical pain in my chest too. I don’t want to distract you with the racism though. The story is relevant in that from that day I believed all my differences were because I was a different race and clearly that was wrong. For others going through similar they may blame the way they look, their weight or anything else bullies tend to pick on for being physically different.
That feeling I got that day often returns, as although I’m a grown woman I’m still that little girl inside when I get left out of things, don’t get invited to an event that my friends/colleagues do, get blanked by people I thought were friends etc…
So how does Autism relate to this?
The reality is I don’t quite fit in with everyone. For me Autism is being a bit different. Society is set up a certain way and for anyone who sits outside the ‘norm’ and doesn’t conform to social expectations from history to now there has always been labels – the geeks, the nerds, the teachers pet, the disabled, the goths, the weirdos, the shy girl, the freaks, the losers, the genius… I could go on but you get the picture. So if I was taking a generalised simplified view of school children for example, we have the regular, cool kids ‘The Neurotypicals’. (NT’s) Their brain is considered ’typical’ as they tend to follow the social expectations. Then we may have the ’Neurodivergent’ (Having a less-typical, cognitive variation), those that don’t quite follow the social norms and expectations and all to different degrees. I class myself as Neurodivergent. I’m Autistic and I have ADHD. I should point out here I don’t have Autism, it’s who I am. To me Autism isnt a health condition or illness and despite the negative connotations brought about by misinformation (that focus on differences being wrong) rather than celebrated I think it’s important for me to identify proudly as Autistic.
Autistic people can struggle with social rules, boundaries, ‘reading the room’. For me that meant as a child I struggled with friendships, social situations, fashion (I just didn’t get it, comfort first every time), and fitting in. To be able to fit in I had to mask, adapt, copy and mimic, basically not be my natural self. A lot of Autistics do this and it’s especially prevalent in girls and women. Some struggle with social cues and don’t care about it maybe because they have an intense interest in something else which takes priority over societal expectations. That tends to be more common in boys.
I’ve got myself in all kinds of trouble for being too honest. As I’ve got older I’m understanding more why lies can be necessary especially with having children who just go and ask someone why they smell and if they have a bath at their house 🤦🏻♀️ . Mat regularly reminds me lies can be good when I say I don’t like his cooking and that the chicken is too dry again 😂.
I don’t care about being ‘cool’, but I do want to be comfortable. In school I wore the most hideous uniform with socks pulled up and a long skirt. The other girls had tiny skirts and socks pulled down but I cared more about being warm than what I looked like. Cue the name calling. However, a change of school in high school a new friend did say it was best to change my ways to avoid the bullies which I’m grateful to her for. I wore trousers instead 😀. Best of both worlds!
I have overly sensitive senses. This means I can hear things too loudly especially as a child. Daylight can be too bright for me and hurt my eyes, I smell things others may not notice, not quite dog standard but can result in nausea (think pregnancy smell). For me personally I have a varied diet and enjoy most foods. But I know from my children and a lot of other Autistics this can be an area of difficulty, tastes, textures and the appearance of food can all cause distress.
I get sensory overload which can result in me ‘shutting down’ (the feeling of no longer being able to cope), being in busy places with lots going on can set that off. Funfairs are my idea of hell.
If I walk in a room I may notice the radio in the background and find it too distracting to hold a conversation. My brain doesn’t filter out background noise like it does for most people. This is something I notice with my son a lot. Often outdoors he can freeze as he hears a sound of a vehicle in the distance that most of us wouldn’t notice it but for him it’s completely imposing and can often scare him as he knows as it gets closer it will get louder and he’ll have to cover his ears as it hurts.
I feel things on an emotional level too strongly, some would describe me as too sensitive. In fact it wasn’t long ago someone I considered a friend looked away from me when I greeted her. I asked if everything was ok and if I’d done something to upset her and she snapped at me ‘Oh just get over it’ 😕. I’m still confused now . You see I don’t get over things, it’s not in my make up. Things hurt deeply like a physical pain, like the first time I was told I couldn’t play with the other kids. People don’t understand that and I wish it was something I could turn off but it’s me and although I’ll always work on it it’s not as easy for me as it is for NT’s. I consider it to be a co-mordid condition of Neurodiversity and it’s called Rejection Sensitivity. I see it in my children now, they can often perceive rejection even when it’s not intended or real.
There are many Autistic children who have developmental delays. I didn’t have physical delays nor did my children but they are considered delayed in emotional, social development. I achieved highly in school and went on to College to get 5 A-Levels and then on to University to get a BSc (Hons) degree. Although this was made much harder with my ADHD and struggles in concentration. I did mostly enjoy learning though especially subjects of interest and I preferred English and the arts over Maths and science.
Firstly I see a lot of the negatives as society imposed. It ls so bad that my senses are stronger than others? Well only when it causes discomfort and perhaps in a different society it wouldn’t be a disadvantage in fact it could entirely be positive. For all the downsides there has to be an up. So yes I’m sensitive but that makes me caring, considerate and empathetic. Yes I might be blunt but you’ll know I’ll never lie to you and having no filter makes me hilarious to be around 😂.
I might lack some social skills but I genuinely care for people. and consider myself to be helpful. I will always fight and speak up for what is right and just. I am extremely passionate and this is evident in my business. I’m not motivated by money and will always put people first.
Starting my own fitness business with no previous experience I think I’ve proved how creative I am and I continually create, adapt, innovate and drive positive change. I can do the unexpected, take risks and make great things happen. My kids will grow up knowing they are amazing and what they lack in social skills they’ll make up for in humour, creativity and innovative ideas.
I’m Autistic and proud of it and don’t want anyone like me to feel shame or stigma which is why I’m doing this post. Yes it’s been hard figuring out that all the things I have been ashamed or embarrassed about are just my different brain but there’s lots more people like me. Some of us still blindly going about our lives not knowing that’s why we are the way we are.
Girls/Women especially are massively under diagnosed yet it’s very likely there is as many of us as there are male autistics. They can mask so well at school teachers don’t see it, they tend to do enough to look like they are coping even when they are riddled with anxiety. The diagnostic criteria has been traditionally set up for males and for this reason many of the female traits are disregarded. There is still so much work to do to change this and it’s important it does change. A diagnosis is not necessary for most. As an adult you can diagnose yourself if you believe you are Autistic you probably are. But children can benefit from diagnosis. Society needs to change to make the world comfortable for all of us, not just the ones who speak the loudest. My son suffers massive pain and distress eating his lunch in the school canteen because of the noise and the way it all echoes around him but now he is able to wear his ear defenders he’s much happier. I don’t think this would happen without a diagnosis.
For all the difficulties there might be fitting in a society not designed for us there’s lots about us to celebrate too. I truly believe that for every part our brain that seems it’s lacking, there’s another part that’s making up for it and we should find it, embrace it, work with it, nourish it and thrive.
If anyone has read this post and can relate please feel free to get in touch if you have any questions. Also please feel free to leave comments on this post. Thanks for reading, Shameem x
More Positives associated with Autism
Attention to detail • Thoroughness • Accuracy Deep focus • Concentration • Freedom from distraction • Observational skills • Listen, look, learn approach • Fact finding Absorb and retain facts • Excellent long term memory • Superior recall Visual skills • Visual learning and recall • Detail-focussed Expertise • In-depth knowledge • High level of skills Methodical approach • Analytical • Spotting patterns, repetition Novel approaches • Unique thought processes • Innovative solutions • Creativity • Distinctive imagination • Expression of ideas •Tenacity and resilience • Determination • Challenge opinions Integrity • Honesty, loyalty, Commitment.