There’s a lot of misunderstanding about Autism and as it’s Autism Awareness Week I wanted to share a personal, perspective on it. My view is quite different from what I thought I knew about Autism 8 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. I’ve researched Autism so much over the last few years and it’s been such a wonderful, liberating experience for me. To raise awareness we need to talk more openly about it and understand that it’s not just our children who are autistic but many parents are too and we are all affected in different ways.
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. As nervous as I was, I was so proud, I made it there and I asked if I could play, it had taken months for me to reach this point and I finally did it! But unfortunately the response was harsher than i could have imagined. “No you can’t play, no P*k!s allowed!”.
That was a long time 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 from my peers and I know now that was wrong. For others going through similar they may blame the way they look, their weight, their fashion sense and anything else bullies tend to pick on for being physically different.
So how does Autism relate to this?
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 class clown, the goths, the shy girl/boy, 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 and most of the the Autistic community Autism isn’t a health condition or illness and despite the negative connotations brought about by misinformation (that focus on differences being wrong) rather than celebrated it’s important for me to identify proudly as Autistic.
Autistics 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 have overly sensitive senses. This means I can hear things too loudly especially as a child. Daylight and bright lights can 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.
Firstly I see a lot of the negatives as society imposed. It ls so bad that our senses are stronger than others? That some children/adults are non verbal? That we choose truth over politeness. If society was more accepting of differences we would all have our place playing to our strengths instead of trying to be something we are not. However there are real disabilities associated with Autism and there is so much struggle for parents of autistic children like myself. And despite the difficulties we have I focus on the positives. So for me, 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 genuinely care for people and animals. I will always fight and speak up for what is right and just.
My children are just wonderful. Completely hard work but so brilliant at the same time. Seth has PDA (Pathological Demand Avoidant) with ADHD and struggles with any demands placed upon him but we find ways to help him and reduce demands where possible. Disguising demands is my new skill and he appreciates that I do that for him. He has found a love of music and one day asked for a drum kit despite never having played drums before. He astounded us with his skill and has already taught himself to play and for an 8 year old has some real talent.
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. 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. I recognise it in many people But often adults have no idea that they could even be autistic as they associate it with childhood disability.
Girls/Women 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 very likely are.
The problem with women not realising they are autistic is that they often get misdiagnosed with anxiety and depression. Who wouldn’t be anxious going to the supermarket with all the sensory overload it can present to us! Bright lights, too many people, constant noise, too choices to make etc. Our brains are just not wired to cope with that. It can be overwhelming, yet that means I’m failing and I must be broken when in fact there’s many of us suffering sensory overload every day. Oh how I love online shopping!
Understanding ourselves can make us feel less like failures in this world because we might be scared to go out or that we are terrified of certain social situations where others seems so comfortable. Understanding that there are so many people who feel the same really helps which is why I speak up about it. We can take control by understanding it isn’t us that are broken but society, and the unrealistic, unfair demands it places upon us. We should all be who we are without pretending we’re ok when we feel awkward. Society needs to change to make the world comfortable for all of us, not just the ones who speak the loudest.
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.