Autism Acceptance Week – Waffa’s story

Waffa Nasser, Service User Representative EDI and Expert by Experience in Digital Improvements, shares her Autism story.

"For World Autism Acceptance Week I’d like to bring about greater awareness of Asperger’s Syndrome, which is now commonly known as part of the Autism Spectrum. The difficulties I’ve always faced is how neurotypical people expect me to adjust to their way of thinking, communicating and understanding, and I always wonder how far I could get in life if others could adjust for a moment to my way of understanding and communicating.

Some people may not know that for example with Asperger’s, there’s a psychological development delay from childhood, not an intellectual delay, not a delay in terms of intelligence, but a delay in terms of social interactions, social cues, expressions, social norms etc. This developmental delay can be significant; for example, even in my teenage years, my psychological development level would have been of childhood age, again not in terms of intelligence, but in social terms. I’ve always noticed this in myself, even as an adult, I’m 47, but even now sometimes my psychological development level might not coincide with my actual age. I’m the kind of adult that always needs an appropriate adult, hence my mum helps me a lot with simple life skills and knowing every day kind of things that adults would know anyway, but for me it can be a difficulty sometimes, even simple things like going shopping. It’s strange that I find simple things difficult, yet find extremely complex things simple.

The way people communicate can be difficult for me to interpret sometimes, small talk is difficult for me especially in social situations, I’d be thinking how to respond? what to say? how do other people respond? what if I come out with something nonsensical… They’re the things I’d worry about, thinking to myself how am I being perceived, do they think I’m weird or something?. I’ve always found it difficult to form friendships, or being around groups of people in social situations, I’d feel like an outsider or I’d feel awkward, so it’s those kind of social difficulties that can become very isolating. I had such difficulties in my childhood also, most times while the other kids where out playing, I’d be in my bedroom for hours reading the dictionary. I’d have more fun with words than with people, because I’d feel awkward and avoid eye contact and not know how to act, what to say, what’s the right thing to say, what’s the wrong thing to say, most times I’d get the two mixed up. I’d be inappropriate at the most inappropriate time. This would be particularly difficult in my school days, as teachers would just assume I’m naughty without realising I had a difficulty. This is why so many people are misdiagnosed until decades later, this seems more so with girls, often they’d be misdiagnosed with Borderline Personality Disorder which is a traumatic label to deal with due to the stigma that always surrounds it.

On the other hand, some people don’t want an official autism diagnosis, they just know anyway, they’ve always known, from the signs of their behaviour and thinking patterns from childhood. But having an official diagnosis can be very helpful to people, but waiting times can literally take several years due to lack of funding, I’ve currently been waiting three years.

Another thing that is a difficulty for me most times, are metaphors or taking things literally, extreme example if someone said to me “It’s raining cats and dogs”, I’d be thinking for a moment “Wow is it really raining cats and dogs are they falling out the sky?". It would take me a while to realise what the person meant, I’d play a whole scenario in my mind trying to figure out how it’s raining cats and dogs, or another example if I was talking to someone and we finished talking and the person said “See you later” or “Chat to you later” meaning in general we’ll chat some other time again. I’d be taking it literally I’d be thinking so the person said see you later? but when later? how many hours later? what time? I need to know every detail of what the word later means.

Another point to mention, when it comes to the workplace, some difficulties I have is when someone is giving me an instruction which seems easy for most people, but it would seem difficult for me because the person didn’t explain the instruction in every minute detail. Then I’d feel shy or embarrassed for having to ask again of what they mean. Or for example in meetings, I’d be shy to ask for something to be repeated and explained in a way that I can understand in my way. I have the same difficulty with directions too, if someone said to me “Such and such place is just up the road”, I’d think “Can you show me the exact direction in minute detail, in fact just come with me to show me every step of the way".

Sometimes I may get on peoples nerves like that, asking for proper details, then I’d worry if the person was angry with me or not, I’d feel like saying “Are you angry with me? have I got on your nerves? are you sure? are you really really sure?”.

Don’t get me wrong I do like to have a laugh with myself the way my mind works, it makes me laugh most times, it’s what cheers me up, to just have a laugh with myself.

But I think a good idea would be for example at the beginning of meetings or any type of engagement, instead of people assuming no one has a difficulty, they should say “If anyone needs something explained or repeated don’t be shy to say so” or something along those lines, because no one would immediately know anyone is autistic unless the person disclosed it at the beginning.

Autism shouldn’t be considered an inconvenience to others, people with autism thrive in the workplace, with our attention to detail and developing our own strict routine to follow. Routines are vital to us, we thrive in our own intellect and complexities and attention to detail. I’d say that’s an asset to any workplace, this is why I love being a part of Mersey Care, this is where I thrive and try to develop further workwise when given the opportunities to do so, with the right support along the way, acceptance, understanding, support and patience. Speaking of the importance of having a routine, for me, if a routine or plan becomes disrupted or if I was given a setback, this would be so stressful to me that I’d go into a meltdown and just shut off from the world. This is why patience, understanding and acceptance is vital within the workplace, and within society.

I’ll end this with two famous autism quotes, first quote is by Dr Stephen Shore -  “If you’ve met one person with autism, you’ve met one person with autism” meaning we are all individuals and unique… second quote is by Professor Tony Attwood – “I see people with Asperger’s as a bright thread in the rich tapestry of life”.