April is World Autism Acceptance Month and Andrew, a service user from Cygnet Adarna House in Bradford, shares his thoughts around life with autism.
What was life like before you knew what autism was?
Growing up I felt that I was different, there was always “me” and “everyone else”. I was that “one kid”, the one kid that was odd, weird and different. I knew I was different but didn’t really understand how or why.
I didn’t like socialising nor was I any good at it, I preferred to keep to myself or watch TV rather than interact with others. I always felt like I was doing something wrong, perhaps overly self-conscious, or maybe because I tended to always do the wrong thing. I didn’t particularly like noise that much.
I liked what I liked and not much else.
What led you receiving a diagnosis?
Looking back I don’t think I realised that other people were more – for lack of a better term – “able” in the things that I had yet to realise that I had difficulty in, socialising in particular.
As I became older, I began to understand more, understand that I did have difficulties and differences, and strengths that many did not. All children have difficulties with socialising and with certain things, and while everyone became more able with social norms, I did not.
I was the one that didn’t know what to do, what to say, and who regularly said or did the wrong thing. But I began to understand this.
I don’t remember when I first realised I was autistic, but by the time I received my diagnosis, at the age of 23, I already knew. It was a mere formality.
How did it feel to receive the diagnosis?
I knew I was autistic before I received a diagnosis, but it was a relief to get confirmation.
Understanding that I was autistic made me understand who I was, made me realise that it is okay to be different and why I was different. I now have an explanation for why I can’t and don’t want to socialise, I know why I didn’t have many friends.
I know why I don’t like bright lights or loud noises, I know why I like doing things that others might not enjoy or understand, I know why I have narrow interests.
I know why I am the way I am, and while autism doesn’t define me, I now have an explanation to being “me”.
What is it like at Cygnet Adarna House?
It’s nice here, everyone is so nice and friendly. They genuinely try and do genuinely care. If there is a problem they try to fix it. I am able to relax here, I don’t need to be worried about doing the wrong things, or fulfilling social norms, I can just be me.
Occupational therapy is of great help, it’s helping me understand the sensory and physical difficulties that I have. I have regular psychology sessions and sessions with the speech and language therapist, and they are always willing to work around me. There is no pressure here, everyone is very flexible, they work around me and my needs. The food here is also very nice, it’s like I’m living with my mum and she’s a chef.
I spend most of my time in my room, because that is where I am most comfortable, but there are always things that I can do on the ward. I enjoy making clay models, there are regular activities on the ward and even day trips.
Do you feel differently about yourself and has it changed how other people treat or respond to you?
I am happy with who I am, many people ask autistic people the question whether they would want a “cure” or to lose their diagnosis. While I can’t speak for others, and while my difficulties might be minimal compared to those faced by others, I can confidently state with absolute certainty that I am who I am, I am happy with who I am and who I am not. I wouldn’t trade places with anyone. The only difference is that I now know why.
Unfortunately, most people don’t share my insights, nor do I get treated any differently. I, to most people, am still that “one kid”. To those that don’t understand autism at all, I am that person who is odd, weird, the one that is different. People often view my needs as demands and my behaviours as choices, even by those that think they know what autism is. Those that “think” they know what autism is, unfortunately also don’t know what it isn’t. My behaviours, needs and conditions that are not autism are too quickly labelled so.
Autism isn’t an answer for everything. It is however often the quick and easy, and wrong, answer.
Some do have a deeper understanding of autism, and I’m pleased that this includes many at the Cygnet. Most though still don’t appreciate just how diverse those with autism are. Many of my needs are still not understood and many of my difficulties are not appreciated because they are not common in others. And unfortunately, many of my strengths are overlooked because “autistic aware” society is too quick to make allowances for the difficulties faced by others, difficulties that I do not have and are in fact my strengths.
While it’s still better to have people that understand that you are different, understand that you are “autistic”, I feel that for me personally I am both disadvantaged because my difficulties are not common enough to be accommodated for and my strengths are overlooked because society is too quick to be inclusive.
How does living with autism affect you?
Not much has changed over the years. I like what I like and still like keeping myself to myself. I dislike loud noises, bright lights and socialising. I don’t like being around people, I prefer the company of objects and technology. Things are difficult at times, having to interact with people and when there is a lot going on around me, it can be very overwhelming. All the light, noise, movement, all the uncertainty of the surroundings. I like things calm and predictable.
I don’t really like people that much. I do enjoy the benefits that autism has given me. I enjoy the predictability of repetitive tasks, I get bored less often and my attention to detail is quite useful. I’m also a very logically inclined person so I have abilities in technology.
Do you think people are understanding of autism or are there still common misconceptions?
Ultimately, one of the things that autistic individuals have in common is that they are “different”. But we are different in different ways. Other than being a social outcast, I have more in common with the general neurotypical than the general autist. And while there is a drive to understand “autism”, autists are often labelled simply as “autistic”. We all have our own strengths, our own difficulties, our own identities.
While it is true, in my observations, that autists are more likely to have neurological strengths or difficulties than the general neurotypical, not everyone has the autism “superpower” nor is everyone the stereotypical non-verbal “I like trains”.
The greatest misconception with autism is that there needs to be an understanding of autism. I am not autistic, I am Andrew.
What are the challenges and benefits of autism?
There are many difficulties I face. Primarily I face being labelled as autistic, I face being considered alongside other “autists” with very different needs, difficulties and strengths. Labelling everyone that is different just isn’t helpful, we are all different in different ways.
Socialising is very difficult for me. I don’t enjoy bright lights, loud noises or people in general, being in an overly stimulating environment where I can’t act instinctively isn’t appealing to me. I am hyper vigilant with my surroundings, there is always too much going on around me, another reason why I prefer the calm and quiet of my own company.
I do find there are benefits to what one might refer to as autism, I pride myself on my attention to detail, my ability to not get bored in a subject matter that interests me, my ability to take enjoyment in repetitive tasks. I have a logically orientated mind and enjoy technology. Ultimately I am able, and more willing to do things that others can’t or won’t do, even if it might take me a little longer because things have to be perfect.
What’s one thing you want people to know about autism?
People with autism are different in different ways. Don’t view someone as autistic, view them for who they are. I hope one day that people don’t ask this question, but ask instead, “what’s one thing you want people to know about the difficulties you face”. I want, one day, the term autism to reside in history books.