Monday, 23 August 2010

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'.

51 comments:

Elissa said...

Yes, yes, yes, yes, yes... loved your questions Casdok, and loved the answers even more!! (Now looking forward to reading D's book!)
xx

DJ Kirkby said...

Hi Casdok
Thank you SO much for giving me my first proper interview about being an autistic novelist. I felt really proud while I sat and read it all on your blog.

Hi Elissa
Thank you so much for reading and enjoying my interview, and for your interest in my novel.

Ellee Seymour said...

Congratulations to Denys on the publication of her second book. I hope it is successful, and that others learn from it.

DJ Kirkby said...

Hi Ellee
Thank you so much for your good wishes. I am doing everything I can to get the word out about Without Alice and myself as an autistic novelist but the support of readers is what I think will make all the difference.

Ro said...

Totally spot on, I was nodding my head (for my daughter) at so many answers :)

Maggie May said...

Many thanks for putting me in touch with Denyse and this book.
I will definitely look out for it and buy it.
I think my daughter & I would find it very heartwarming and inspirational.
Maggie X

Nuts in May

Tom Foolery said...

Great questions Casdok and a very revealing, honest and informative interview, thanks DJ. :) TFx

Carol said...

That was a superbly superb interview! I thoroughly enjoyed reading it and learning a bit more about what DJ has to go through each day!

C x

DJ Kirkby said...

Hi Ro
I thought I answered you earlier on here but it seems to have gone astray. I'm glad you were in agreement with what I said in my response to Casdok's questions.

Hi Maggie
Thank you for your interest in my novel. I'm not sure how long it will take to get to your local bookstore or library but asking repeatedly will help :). If you can't wait for the general release date on Oct 4th then you can buy a copy form my publisher (Punked Books) now.

Hi TF
Thanks for reading and commenting!

Hi Carol
Thanks for coming over for a read. I keep forgetting you don't know everything about me :)

Akelamalu said...

Congratulations to Denys for overcoming her difficulties and on the book publications. :)

DJ Kirkby said...

Hi Akelamalu
Thank you :)

salarsenッ said...

This was very powerful. I've heard both book. Sounds wonderful. Thank you for the interview.

Christina Lee said...

This was a GREAT interview and I learned so much! THANKS!

Debs said...

Thanks for such an interesting interview. The questions and answers give us such an insight into Aspergers.

I loved Without Alice. It was such a cleverly written book and one that's definitely worth reading.

Lane said...

Excellent interview and such honest informative answers DJ. Thank you.

Susy said...

Hi. This is interesting. I could relate to so much of it. How do i get myself diagnosed and what support/services does a diagnosis give you?

DJ Kirkby said...

Hi Salarsen
Thank you for your comment. I hope you enjoy Without Alice when you read it.

Hi Christina,
Wow. Thank you :)

Hi Debs,
Thanks for reading and for linking back to this interview.

Hi Lane
Thanks for stopping by. Glad you found the interview interesting, please spread the word.

Hi Susy
Casdok or I will need mor einformation about you before we can best advise you, like what country you live in and how old you are. Email either of us and we'll try to point you in the right direction and answer your question about the support available.

Maddy said...

I didn't realise [notice?] that you don't review books, but now I come to think of it I never have read a book review here - so there you go.

So glad you agreed to interview instead - here's to all late bloomers.

Ron said...

Wonderful interview questions, Casdok!

And wonderful answers DJ!

Even though one of my closest friends has a son with autism, I had no idea what Asperger was. You've opened my eyes to it very clearly. I can't tell you how happy I am for your book publication. Yaaaaaay! You GO, girl!

Much success and happiness to you, dear lady!

Thank you for sharing this interview.

X

CC said...

Fascinating and great questions!

Amanda Sablan said...

That was a truly inspiring interview! Thank you for sharing! :D

DJ Kirkby said...

Hi Maddy
I'm glad Casdok agreed to interview me too and I look forwad to being on your blog sometime in the enxt couple of months :)

Hi Ron
I've seen you on a few blogs that I visit. Thank you very much for your good wishes.

Hi CC
I'm glad you enjoyed reading this interview. Thank you for leaving a comment.

nitebyrd said...

This was a great and very educational interview, Casdok & DJ. Thank you.

I did enjoy "Without Alice" very much. DJ is an amazing writer.

Talli Roland said...

Fantastic interview, ladies! It's amazing how much Denyse has accomplished, diagnosis or not!

Looking for Blue Sky said...

Very interesting especially as I think there is definitely a bit of aspie in me.

Suburbia said...

That was a riveting interview, thanks so much

DJ Kirkby said...

Hi Nitebyrd,
Thank you for reading Without Alice and for being so complimentary.

Hi tali
Thank you so much :)

Hi Blue Skies
I'm glad you found this interesting. I'm happy to answer any questions you may have.

Hi Suburbia,
Thank you for taking the time to read and for leaving a comment.

Simon_E said...

An incredibly insightful interview and one that rings very true to me. I hope that people focus on the quality of the book (and quality it is) that would be masterful written by anyone.

Good luck with the book tour.

DJ Kirkby said...

Hi Simon
Thank you very much for the compliment. Wow. I feel quite honoured to have been given such praise from a reader. Erm, you HAVE read Without Alice right? I hope I haven't misunderstood your comment.

Green Girl in Wisconsin said...

Oh this book sounds fascinating! And I agree, there is much presumed about higher-functioning grades of autism. Holding down a job and paying bills should not be the only litmus test of a person's success or capacity to get along in life! I bet Alice was stunned to learn this about herself and found so much clarity in the process.

Anonymous said...

People need to stop romanticizing autism as something wonderful. The only reason seems to be some need for attention. Savy parents know not to listen to such misfits as yourself and Casdok but there are some who sady fall for it.

DJ Kirkby said...

Hello Green Girl,
I do hold down a full time job and pay all my bills. But I do agree with you that many very special people in society do not nessesarily have full time jobs and that we can not use one set of criteria to judge people's worth. Alice is not autistic in fact non of the charectars in my novel are autistic. It is a contemporary ficiton novel with very mainstream charectars in it :)

Oh hello anonymous,
I have to say that I think it’s a real shame that you didn’t take the time to read the interview before leaving a comment. If you had then you would have known that not once do I allude to finding that being autistic is wonderful, in fact I find it a real struggle, but I am PROUD to be autistic. Furthermore, this interview clearly demonstrates that I although I struggle with being autistic I am also manage to work full time, keep my husband and children happy and fit in writing time when my family does not otherwise need my attention. I always find it helpful to make myself fully aware of the detail in written pieces such as this interview before I leave a comment which in any way refers to the content that I am commenting on. There is no need to thank me for this advice but I do strongly recommend that you try to make use of it in the future if you wish for your comments to be taken seriously.

Crystal Jigsaw said...

Such wise words and a wonderful insight. I cannot tell you how many people have said they are surprised at my announcement of Amy's autism, assuming she is "normal".

SHE IS NORMAL. PERFECTLY.

CJ xx

DJ Kirkby said...

Hi CJ
Not only is she normal (more common than some would lead others to belive) but she's got a great career ahead of her an an author 'cos that girl of yours sure can write!

Jenn @ Juggling Life said...

I am going to put both books on my list.

I know that many people are wary of "labels," but the diagnosis and label of my son's Tourette's Syndrome was quite a relief to him.

DJ Kirkby said...

Hi Jenn
I think people are wary of labels because of the negative press they've recieved. Why do people only talk about negative things? That is one of the many curiosities in this world. Thank you for sharing a positive story about being given a label, and thank you for your interest in my books :)

Jade said...

What a great post Jen, than you for posting it. I enjoyed every minute of my reading.

Hope you and C are doing well, I think about you both often.

XXXX

Tanya @ TeenAutism said...

Insightful interview! I am glad to hear about this book - thanks for posting about it!

P.S. Love to you and C!

Palm Springs Savant said...

Fascinating. I learn something from your blog nearly every time I visit. I 'll check out this book for sure. Thanks for the tip! (oh, and well written post here)

Gran said...

Casdok, this is a wonderful interview. And D.J., my admiration for you grow every day. Brava!

DJ Kirkby said...

Hi Jade,
Thank you both for reading and for enjoying my responses to Casdok's great questions.

Hi Tanya,
Thank you, I'm glad you found it interesting and I hope you enjoy my novel.

Hi Palm Springs Savant
Nice to see you on here. I used to read your blog and then somehow lost the link to it! Thanks for your interest in my novel, I'd be interested to hear what you think of it.

Hi Gran
Thank you for taking the time to read two reviews in one day, and thank you for the compliment :)

Bonnie said...

Casdok good to see you blogging again! Great interview!

starrlife said...

Love to see you writing Casdok and about DJ is a perfect treat! I look forward to reading the book and passing the word along. Great interview!

jazzygal said...

What a fabulous enlightening post! Well done for the astute questions Casdok... and well done DJ for the very enlightening answers. really enjoyed this one.

Oh that "fulfilling and rewarding lives" were at the centre of Irish Governmental policies... even if yours does end in October, sigh....

xx Jazzy

DJ Kirkby said...

Hi Starrlife,
Thank you for your interest and your support.

hi jazzygal
Thank you so much. I'm glad you found it interesting :)

r.b. said...

I've read the first few pages, and it's very good. You are a good writer!

I wish I knew Stephen's secret......guess I'll learn soon enough!!

DJ Kirkby said...

Hi RB
I'm so pleased you've bought a copy and I look forward to hearing what you think of it at the end.

Withy Brook said...

Thank you both for so much information on Autism and Aspergers in particular. I have learnt sooo much about both since I "met" you on PC. I shall definitely read the books.
I am not surprised that Anonymous was not prepared to identify him/her self.

Dr. Deb said...

This is SUCH an important book. I can see why you bent your rule.
What an amazing story.

DJ Kirkby said...

Hi Withy
Thank you so much for your interest in my books, and for your support about the anonymous comment.

Hi Dr Deb
Thank you!

Maddy said...

Just wanted to double check and make sure I didn't ask the same questions as you : )