Without Alice

I remember very well the post DJ Kirkby wrote a couple of years ago when Denyse was diagnosed (at 40 years young) and ‘came out Asperger’.

Denyse said ‘ I am still the same DJ Kirkby except that now instead of feeling cross with myself for finding everything such a struggle, I am filled with a sense of pride at all that I have managed to achieve’.

Since then Denyse has had her first book From Zaftig to Aspie (a memoir) published. And Denyse is about to launch her second book – a novel   Without Alice.

I am asked to review many books on my blog – all of which I turn down, even this one! Instead I took the opportunity to ask Denyse some (tongue in cheek) questions. Denyse would also be more than happy to answer any of yours. You can find real reviews here.

Why were you diagnosed so late?

I was diagnosed late because Asperger’s syndrome wasn’t classified as a disability until the late 1980’s by which time I had developed chameleon like coping mechanisms. Getting my diagnosis was one of the most life enhancing things that has ever happened to me as at long last I understood why I felt alien from the majority of people I came into contact with, and why I struggle with things that seem to come effortlessly to them like behaving in socially appropriate ways seemingly without effort. It is nice to be able to act as a role model for my son who is also an Aspie and my husband has benefited from my diagnosis because he understands that we really are totally different and we get along very well because of, or in spite of, our differences

Fulfilling and rewarding lives is the Government’s first ever strategy for adults with autism in England (the consultation ends Oct 22nd)  What are your thoughts on the actions for improving access to diagnosis and post-diagnostic support for adults?

I worry that once again the higher functioning autistic people are going to get forgotten about. There is a need for sheltered accommodation for those of us when we first move out of our parents homes and need to make a slower transition to fully independent living. Because we can come across as coping so well (we are chameleon people after all) it can be mistakenly thought that as we are holding down jobs, paying our bills able to cook clean and so on so then we can move out on our own safely. Wrong. One of the major things about autism is that there is a social developmental delay. So I was able to do all that I just mentioned and ended up moving thousands of miles away in Canada to work in a town called Banff. i was a hard worker, fairly good with money but so very socially vulnerable. At 18 I had the social etiquette and awareness of a much younger person and got led astray into a lot of things that a more socially mature person wouldn’t have. Even now I am still very socially vulnerable but as I am in my 40’s I think the gap has narrowed and therefore I am less at risk of being led astray. I have also learned that I am vulnerable and try to avoid putting myself into situations where I could get into trouble. I try to go out only with people who know me well so I can double check things with them. For example I can;t easily interpret people’s reactions and can mistake surprise for anger and vice versa. With friends nearby I can judge by their reactions as to how I should behave in response to the situation. Though I am apt to say exactly what I think just like a small child and there isn’t much they can do to stop me doing that….Life does get interesting with me around apparently. Sorry, I seem to have gone off at a tangent there…

The other thing I would say about the consultation document is that it needs to address the fact that high functioning people like me actually may not be functioning all that well under our chameleon colours. Sometimes we desperately need access to counselling and other coping strategies but because we hold down jobs, maintain relationships and so on – it can often be thought that we are coping well when in actuality we are struggling so much to keep it all together that we can’t stop long enough to ask for help. Sort of like when you see a person drowning in water and they don’t shout for help because they are too busy frantically trying to keep from going under.

I use writing to help me make sense out of the chaos of everyday functioning in a predominantly NT world but I still cry more mornings than not at the thought of having to go out and be at work all day, still fret over making socially unacceptable mistakes that will cost me my job. So even though I am very grateful to have a full time job with which to pay my bills, I dream of being able to write full time in the predictable comfort and safety of my home.

Without Alice is full of emotion and tangled lies which shows an understanding of others emotions and imagination. Your Aspie – you’re not supposed to be able to do this!!!

To be able to survive in a predominantly neurotypical world I have had to make a lifetime’s work of studying communication in all its forms. I find it fascinating how easy it is to misunderstand what another person means and the major events that can occur because of a simple misunderstanding or through lack of communication. I have learned how to function in socially acceptable ways, enough that I am able to work full time, but maintaining a neurotypical facade will always be the equivalent for me as a mainstream person watching a play in a language they learnt’ secondary to their first language. So, yes, the play can be understood but only after the words have been translated into the main language first. So the delay is always there and some of the subtleties of the social interaction are missed along the way, meaning it’s not as rich and fulfilling for those involved as it might be otherwise. But I am able to understand other’s emotions if I make the effort (though it is easier to write them into a novel that I can write in segments than to do it in real life), and I have always had a good imagination!

I understand you are also dyslexic – aren’t dyslexic people supposed to ‘hate’ reading and writing?!!!

I’ve always loved writing, right from the moment that I realised that it was one way of expressing to others how different I knew I was. I began writing stories when I was very young and it has always been a good way for me to work through events that I find confusing or to try and explain why I reacted or behaved in a way that neurotypical people considered inappropriate. However, being dyslexic (you think they’d call it something easier to spell) means that I make a lot of typos and spelling errors, so to be sure my novel was in the best shape possible I paid to have it professionally edited before I submitted it to my publisher. I knew that I had to be confident about my novel if I was going to be able to sell myself as an author who has multiple disabilities, none of which would fit the stereotype of good idiosyncrasies for an author to have.

How do you juggle a full time job, being a loving wife, mother and writing?
I didn’t know autistic people could do these things!!!

Well I’m actually dyspraxic too so I’m not very good at juggling. I can just about throw one ball up in the air and manage to catch it, without hurting myself or someone nearby, in the process. Lots of mums nowadays have to work, raise a family and fit their hobbies in where they can. Just like with neurotypical people, autistic people are all individuals and there is a huge variance in what we can or cannot do. I work full time because I have to in order to ensure that I can pay my share of our bills. I remind myself (sometimes on an hourly basis) that doing so means that we can afford our house with its heavy duty insulation, nice open plan rooms and garden, where I can escape from the sensory overload that comes from living in a predominantly neurotypical world, instead of having to live in a council flat where I wouldn’t be able to. I’m very lucky to have a supportive (though sometimes baffled) husband who accepts that sometimes the lightest touch or noise can make me twitch. I also have a son who is autistic and I want to set an example for him that autistic people can manage to function in a neurotypical world to varying degrees with the right effort and the right support and that, most importantly, that being a success in the neurotypical world won’t deprive us of our autism.

You can find out more about Denyse at her blog, Twitter and Face book
‘Without Alice’ will be available to order from all good bookshops from October 4th 2010. However, you don’t have to wait till October, ‘Without Alice’ is now available to order direct from Punked Books

I’d like to leave you with this one hint; if someone ever tells you that they are autistic please don’t tell them that you are surprised by this revelation, it makes a mockery of all their efforts to maintain their neurotypical facade. Not that I have issues about this or anything. Ahem….*gets off soapbox*
‘Without Alice’ is the beginning of my own personal campaign to raise autism awareness and acceptance. Thank you so much for reading this everyone and I do hope you read and enjoy ‘Without Alice’.
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Jen Shrek on Twitter
Jen Shrek
Mum, advocate and #ActuallyAutistic challenging the system.
Jen Shrek

Jen Shrek

Mum, advocate and #ActuallyAutistic challenging the system.

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