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The Autistic Voice

To inspire, entertain and most importantly help you realise that while life doesn't always follow your chosen path, there is always something positive to be learned and more to be gained. Dr Sandra Beale-Ellis

I LOVE BOOKS!!!

Hi Readers

Right back to a very young age I have always been obsessed with books. My Auntie Sally apparently tried to get me to repeat nursery rhymes after her as she read them to me; sadly I was a pretty stubborn toddler.  My mum tells me that as soon as she had left the house, I proceeded to recite, or perhaps read, them all perfectly.  I started reading from the age of three, yes I was precocious but also unbeknown at that time, autistic; and this is a common clue for diagnosis of Asperger’s syndrome.

I remember at Christmas, there was always a book in my stocking (make that a pillow case) left by Father Christmas (or Santa as I call him). I remember waking each year at about 2am to find a stuffed pillow case and all I looked for was a book shape.  Once I had opened this gift, I was happy to go back to sleep until a proper waking time, when I would read said book.  My other favourite gifts were a notebook and pen but I will save that for another lesson.

Through the first ten years of my life, I worked my way through the libraries of Enid Blyton, Noel Streatfeild, Lewis Carroll, Anna Sewell, Frances Hodgson Burnett and many more. I loved all books, but my absolute favourites were Enid Blyton hardbacks including the Faraway Tree, the Naughtiest Schoolgirl and Mr Twiddle; moving on to the series books: Famous Five, Secret Seven, St Clares and Mallory Towers.  Even now I have some of these books on my shelves and I read them from time to time.  I was even a member of the Enid Blyton fan club.

I always wanted to go to boarding school and take a tuck box with edible goodies to eat at midnight feasts. There is something about books read as a child; the memories live with you always.  I can almost smell the macaroons, the fresh bread devoured by the Famous Five on their adventures, and yearn for the ‘lashings of ginger beer and hard boiled eggs’.  My nan used to make rock buns and I imagined they were those eaten by the Secret Seven during their meetings in the shed with homemade lemonade.

As I became a teenager I read pretty much anything put in front of me but one book which impacted me more than any other, was one studied for GCE O’Level (yes, I’m THAT old!). To Kill A Mockingbird by Harper Lee was published in 1960 and is the most wonderful book. I loved everything about it; the innocent but so intelligent child’s language narrating the story, the serious message behind it about racism which sadly still lingers on today in many parts of the world, even in this country, and the suave lawyer Atticus Finch who tries to be fair and just.  Most of all I love the interactions with the characters, especially the children and the lonely character of Boo.  More recently I have been aware that there is a chance that this character was autistic; a co-incidence I wonder?  I managed to quote from this book in every one of my doctoral papers including a few times in my final thesis and now in my latest book Sensing the City.  There seems to be appropriate words for pretty much every situation, and I continue to read this book time and time again. I was so incensed when it was taken out of the British school curriculum I wrote Michael Gove (the Education Minister at the time) a strong letter and sent out a press release objecting.

There is something about books – the smell of the paper, the feel of the pages turning. My books often looked ‘lived in’ with tea and coffee stains, and just yesterday I managed to get a beetroot stain on ‘The Catcher in the Rye’ a classic I just discovered after it being mentioned a couple of times in a movie I was watching.

That is not to say I don’t love an E-Reader as well. I resisted for several years before someone I respected in higher education told me he had discovered one and loved it.  I quickly became addicted as I could download most of the books I wanted in the seconds I actually wanted them.  No waiting for a bookshop to open, or the postman to arrive.  It also meant I could flit about from book to book depending on my reading mood, and was especially useful if I was travelling or away.  No having to decide which books I wanted to take with me, or limiting my choices depending on the weight and size.

Regardless of how or what I read the books these days, I do have a few more unwritten (until now) rules than I did as a child who read just about anything.

  1. If the description doesn’t grab me, even if the reviews are good, I usually won’t bother to read it. If the author or the publisher hasn’t made an effort to entice me as a reader, why should I spend time ‘trying it’?
  2. I need to be caught up in it by the end of the first couple of chapters or I usually give up on it. There are so many books out there to read, I need to spend my time reading what will inspire me.
  3. I realise that having read no 2, I am now at risk that you may be considering putting my books in with your next charity donation, but give me a chance; they are well worth reading… really.
  4. If the book is a printed version, I now pass it on to someone else; either by way of charity bag donation, or I leave it on a coffee shop table, park bench or train seat with a sticky note telling the finder it is a gift for them but to pass it on when they have finished reading it.

I believe that being able to read is a gift. Books teach language, spelling and grammar, give inspiration and motivation, pass on knowledge and skills, and create a strong foundation to build a life upon.  Reading is a skill or pastime which can last a lifetime.  If someone can’t read for one reason or another, there are audio books which can be equally wonderful to listen to.  There are stories, poetry, life experiences, languages to learn, facts to absorb, or words to inspire.

Books have made my life complete and I would never want to be without them in some way.

I am especially proud to be releasing this blog today, which is the publication of my second book Sensing the City: An Autistic Perspective.  You can read about it via this link or in my last blog.

Many thanks

Until next time…


 

SENSING THE CITY

Hi Readers

I have not blogged now for nearly three months.  It has been a difficult time with various activities and projects, two family deaths, the death of my best friend, and a two week old baby of another friend, and the upcoming publication of my new book.

As the publication date of my book is only two weeks away, I have decided to write about this for the first blog back.  The rest can wait for another day.

Sensing the City: An Autistic Perspective is the culmination of an idea which developed nearly three years ago, just after my doctorate was completed.  I was on a much needed long weekend break with my husband in London, and we were having brunch in one of my favourite restaurants, when I started to point out the sensory delights around us.  I wondered, to him, whether we notice them because we are autistic, or does everyone see what we see.  And so the seeds for the book started to grow.  With some bravery after a couple of months of working on the idea, I approached Jessica Kingsley Publishers to see whether they were interested in the project and the rest as they (who are they?) say, is history… or is it.

If only it were that simple.  The next couple of years involved a lot of travelling, eating, spending and note-taking; and then the writing began.

For any author, writing a book is always a challenge, even for the most competent writers.  Combining writing the book with the sensory journeys around a variety of noisy, smelly and frantic cities was a task which at various points seemed highly unlikely to ever come together.    Autistic overload was frequent, and the tiredness was akin to running in the Olympics every hour of every day for a month (or in my mind at least).

I owe a lot to my husband Joe – not only for his support throughout, but for some of the wonderful examples and stories included in the book!  I shall not blog my thanks and acknowledgements at this stage; the book is not quite available yet, and I’d rather the interested parties saw the thanks in the book first-hand.

I do need to acknowledge Jessica here however, as she managed to calm me down when I was ready to give in, and persuade me to keep going.

I can’t believe that it has finally reached this stage, and that clever people within the field of autism, have read and agreed to endorse it; Sarah and Nick: big virtual hugs – I know you would not wish to be given real ones by me – for those not in the know, it’s an autistic thing!  Just the foreword by Dr Luke Beardon is worth reading the book for – fabulous.

Sorry if I sound like I’ve won an Oscar; if only.   Perhaps it will be turned into a film?!

Now I would like to travel around India with an accompanying person who can show me around and help with any anxieties – if anyone from the BBC is reading this, please contact me – Sensing India: An Autistic Perspective (copyright me).

So, what are you waiting for?  Get out there and order your copy. Tell anyone who is listening to buy their copy.  Available on Amazon now… or through JKP books.

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See you at my website www.theautisticvoice.co.uk

Until next time…

 

 

 

 

ALICE’S ADVENTURES IN WONDERLAND: AUTISTIC CONNECTIONS?

Hi Readers

Now this is unusual for my blog; to write about a tearoom.  What I am really writing about I suppose is one of my favourite childhood books (away from my obsession with Enid Blyton anyway).  Alice’s Adventures in Wonderland by Lewis Carroll.  I loved the book and still have my childhood copy given to me by my godparents; red faux leather with gold embossed lettering, published in 1975.  Just getting the book off my bookshelf this evening, has made me want to read it again.  I chose the black and white image rather than coloured ones, as that’s how they appear in my book.

Lewis Carroll, aka Charles Lutwidge Dodgson, is one of the famous people named on many of the lists of famous autistics.  He preferred the company of children (!) and was very antisocial.  He disliked dealing with more than one person at once.  His time management was such that he missed meals and bedtime, in his bid to concentrate on writing.  He had a curiously naïve belief that others could be converted to his way of thinking.  He was extremely rigid in thinking and planning. He was  an obsessive photographer.   Several of his characters show potentially autistic traits apparently.

These are just some of the traits which have been linked to him.  It certainly sounds as though he was on the spectrum but of course he died long before Hans Asperger or Leo Kanner had described these traits or before they were named.

Local to me is a new tearoom; aptly named Alice and the Hatter.  It is a lovely big colourful place; not strictly following everything Alice’s Adventures in Wonderland, but there is a very large nod to the book itself.  It is really an assault on the senses; perhaps if autistic and you’ve had a difficult day, it might be a little too much, or simply pick a quieter late afternoon weekday visit.   This seating area is just one section; there is a massive long table with grass going all down it, either for eating at or for children to read or draw, and there are usual grown up tables and chairs.  There is a literary scheme where local businesses sponsor the tearoom to buy ‘Alice’ books to encourage children to read.  I believe the children can take these home with them.   Food is named around characters and scenes from the book.  There is ‘Disney type’ music playing.  At events there is a Mad Hatter and Alice.  It really is quite lovely.  I am trying to encourage the owners to open an ‘Enid Blyton’ themed tearoom next.  I can imagine eating the Famous Five High Tea with ginger beer and rock cakes!

It makes me wonder if I was drawn to Alice when I was younger, being autistic?  Yes, I must read the book again soon to find out if there is any relevance.

 

If you are passing through East Kent, pop in for a visit, but it might be worth booking; at the weekend, it was jam packed.  Until then, just revisit your favourite childhood book; I love to get out of the adult world from time to time.  Let me know what your favourite childhood book was and what memories it stirs.

Until next time…


www.theautisticvoice.co.uk

AM I AUTISTIC? DO I WANT TO BE?

Hi Readers

This image depicts a slice of a conversation I had this afternoon with a young teenage girl and her mother.  I had been asked to chat to her as there has been talk that she may be autistic and she was struggling to cope with the world, and school in particular.

Her parents are trying to get the help she needs; meanwhile her life feels topsy turvy while she tries to make sense of the world around her; and the peers who should be her friends but just appear as though they are ‘aliens’.

One day she feels on top of the world; the next she feels as though she is not worthy.  She is a beautiful young lady, with a heart of gold.  My fur babies instantly fell in love with her which makes her a good person in my eyes.  Within seconds of meeting her, they were rolling around waiting for tummies to be rubbed.  Holly, usually very wary of strangers and especially children, was snuggling up to her as she would to my husband.

Secondary school is difficult for her; she is aching to find her place there but it is not easy.  I confessed that I felt the same at her age; it was the year I was bullied: emotionally, name calling, bag being thrown carelessly around the room; every attempt to embarrass me.  Why… I still don’t understand.  I had done nothing to anyone; I went to school, I read mostly, hated PE, and wanted to learn.  Why was this bad?  I watched my peers, trying to copy their clothes, the way they did their hair, or used eye shadow.  Did I want to be like them?  Perhaps.  Mostly I just wanted to fit in so that they would leave me alone… literally.  I would offer to help teachers tidy classrooms; anything to prevent me from having to interact in the playground.  Perhaps I was seen as a teacher’s pet.  Looking back it was highly likely.

Chatting with this young lady was supposed to be for her benefit… it began to feel like therapy for me; a way to let out all the feelings I had kept locked up for decades perhaps?  I talked and talked; so much I exhausted myself.  Despite us autistics not being able to read facial expressions, I knew the moment she’d had enough; the moment I had given her too much information.  I tried to slow down, to wrap it up, but still my voice kept on going.  Now I feel exhausted and guilty that I had overloaded her as I was trying to help.

I left her with a few small coping strategies.  I always maintain I don’t just want to cope, but for now that’s what she needed from me.  Enough to at least get her to school without a panic attack.  She is going home to start a journal; where she can let out whatever is in her thoughts and heart, without saying it aloud, without having to engage with another and not know what to expect in return.  She is going home to work with her parents, in building a ‘chill out zone’ within her room, or somewhere in the house.  Another autistic child I know has a ‘tent-like’ space in his room with lots of squishy cushions, lights and books.  His quiet space.  I would quite like a version for myself in fact.

My own get away is go visit the cinema alone during the day when I can.  I love to do this; sitting in the dark, focusing on a movie, not having to engage with anyone else.  I always pre-book my seat in the same position of the cinema – top right hand corner looking at the screen.  I have a wall behind me for safety; a little shelf for my bag to safely sit and I can see every position including the entrance from this seat.  No surprises.  Complete control.

I feel bad that she and her parents are now going to start the often horrendous process that is diagnosis and all that goes with it for a child.  I hope her school are sympathetic and will do something to help her find a ‘chill out space’ within the school.  Ironically she wants to be a primary school teacher when she is older; perhaps help other children not to experience what she has herself.

When will girls get the help they need; the recognition that autism is not just for boys?  We don’t want to just cope.  We want to thrive, to live…

Until next time…


www.theautisticvoice.co.uk

GRATITUDE – NATURE

Hi Readers

I know… its been a couple of weeks and I should have been blogging about my gratitude challenge.  I am a little behind but I will catch up – promise.

The exciting news is that my book Sensing the City, has finally been finished and is now with the publishers.  As soon as the cover has been finalised and approved, I will reveal it plus a synopsis of the book content.  Just be patient… its due out on 21 August and is available for pre-order on Amazon.

For now, I shall concentrate today’s blog on nature.  I have been inspired today by weeding!

After a lovely yoga class this morning, where concentration was the theme, we practiced balances including tree posture and its various forms.  I then went into my office for a few hours where I became quite stressed and in need of more relaxation.  I decided, for the first time this spring, to do a little work in our large garden.  My plan was to do no more than half an hour, just some tidying and sweeping.  I have just come in from the garden (it was about to get dark) having spent just shy of an hour – I cleared weeds in one large area, collected dog poop (yep, reality kicked in), and walked around the whole garden assessing what was next to be done.

Rather than being tired and fed up as I often am when I leave all the gardening to the weekends, I felt invigorated; grateful for the opportunity to get my hands (well gloves anyway) dirty, to smell the earth and the weeds, to chat to the cockerel as I weeded alongside the chickens, to see the sun in the sky as I grovelled on my hands and knees, pulling grass and dead stuff; clearing space to add beautiful plants and flowers.  All around me were daffodils and hyacinths rising to attention, and snowdrops just beginning to flower.

Often when I finish my normal work day, I will sit in the front of some nameless show on television for a while to ‘relax’.  I am not sure that it really relaxes me; I just feel as though I have wasted an hour of my time.  Today I felt productive, excited that I had started to make the garden look better, and grateful for the opportunity to really feel part of nature.

I go into the evening with renewed vigour, keen to continue to be productive but in a relaxing kind of way.  I am sure I shall sleep better, I will have achieved something useful, and I will have more time at the weekend after teaching, to do something more exciting.  For this Sunday, I have planned an audition to take on a small part at my local theatre; it is years since I was on the stage so I am looking forward to this, albeit nervously.

I may end up working behind the scenes this time if the parts involve too much line learning; but the possibility is exciting regardless.  There is a need for a production assistant as well; perhaps I should take this on; I can be very loud when I need to be; bossy, me… surely not?!!

Wish me luck for Sunday.  For now I am off to feed my fur babies for which I am so grateful.  I need a good long sniff of both of them, and then I shall be very happy for the evening.  I also have a lovely camembert in the fridge ready for baking… a certain LB influenced this one.

Until my next blurb…


 

GRATITUDE – THE REALISATION

imagesHello Readers

I have always considered myself a positive person, who is grateful for what I have.  I am in the midst of a yoga foundation course, and have to write a journal as part of the course.  The comment from the tutor, is that I need to make more notes about showing gratitude, rather than my usual critiquing and reflecting.  During the recent day of training for the course, I heard myself saying rather too much, ‘I can’t do that’, ‘oh I’m rubbish at that’, ‘my balance is bad on that leg’…  I hadn’t realised how much I put myself down when I think I am struggling with something.  It has been a real eye opener.  As I was teaching on Saturday, I heard the same from some of my students, yet I became impatient with them, knowing only too well, that they could do it.

I then had a conversation with my husband, over the weekend, while he was washing my car, as he does every weekend.  Have I been grateful for this activity, or do I take it for granted?

The conversation was around the support we give each other in our lives, for our study, our work, our passions.  I began to doubt myself; do I give him enough gratitude for what he has done for me, for what he loves to do.  Does he give me enough in return?

I had a day of being overwhelmed last week, and my two pooches came and sat on my lap, one of them licking my face as a few tears rolled down.  Am I grateful for the love they show me unconditionally, do I play with them often enough to prove my love for them?

I have an assistant in my office who works hard and steadily through her work without complaint, while around her are two stress-y autistic bosses; one who loses patience at many small problems, and the other who is either hyper-active in all that she does, or feeling as low as can be (that’s me).  It can’t be easy for her, yet she seems to take it in her stride.  Are we grateful?

I have a beautiful house in the country, with a large garden, hens, doves and I grow my own fruit and veg; am I grateful?  At the weekend I moaned quite a bit about how much cleaning it takes… yes I love what I have but perhaps I don’t appreciate it as much as I should.  I am not sure why I moaned – I had a lovely time cleaning and clearing out yet more clutter.

I am quite distraught by the fact that I do not seem to be as grateful as I should be, that I am perhaps not as positive as I thought.

I am therefore setting myself a challenge, which you might want to join in with as well.

I am going to find something I am grateful for each day and write it into a journal (my usual notebook on a special page), for 30 days.  I shall blog about these.  They could be just privately acknowledged, or as a declaration on a social media platform, or just said out loud to your family each day.

Once I have finished the whole 30, I shall publish them as an article on my website, www.theautisticvoice.co.uk.    In the meantime keep coming back to my blog for updates as I progress through my journey.

Good luck to us all.

Until next time…

sandra

 

 

THE ANTICIPATION OF SPEAKING

Welcome to February.  Where has the first month gone?  My goal for the year to simplify life and take on fewer commitments seems to have gone awry.  I have taken committed to a few speaking engagements in the next few months so this blog is about the pre-speech.

20120626-223607.jpgThe night before a ‘talk’ and I’m starting to feel anxious; that knot in the pit of my stomach which threatens to burst if I think about it too much.

My notes are all prepared; no PowerPoint for me this time.  Just me stood in front of a group of people who apparently are eager to listen.

This one is a lunch and I’ve already refused to eat with them.  The autism which is part of me, avoids social functions if possible when small talk is involved.  Add in the after lunch speech, and my anxieties would have been sky high.

The train journey to London has gone too quickly; in a couple of hours the time will be upon me.  This time my husband is at the lunch; the first time he has seen or heard me speak in a professional capacity.

He goes off to lunch and leaves me in a hotel lounge with the train tickets… dangerous.  I was tempted to go home but decided instead to rearrange my notes.  Nothing like last minute changes.

I leave the hotel and head to the venue, only to find they are running late and not even eaten the main course yet.  So I quietly sit in a corner waiting, until eventually they try to persuade me to eat.  Anxiety once again sets in… Delays, expectations not fulfilled, being coerced into an uncomfortable and unfamiliar situation – everything an autistic individual tried to avoid.

Wish me luck.

Until next time

sandra

 

www.theautisticvoice.co.uk

NEW BEGINNINGS

Happy New Year to you all.635856536729266387-1590926749_new-years-resolutions-photo

‘A New Year’s resolution is a tradition, most common in the Western Hemisphere but also found in the Eastern Hemisphere, in which a person resolves to change an undesired trait or behaviour’.

This is the computer search definition of a New Year’s Resolution. Traditionally we all make some kind of resolution, but how important are these really?

I stopped resolutions years ago, but instead set myself a few well-chosen goals. For example in 2014 one of my goals was to become a doctor.  I knew I could achieve it, my doctorate thesis had been handed in December 2013, and my viva for the end of January 2014 was already arranged.  It wasn’t a foregone conclusion however so it still provided me with a challenge.  I passed my viva with minors, so I still had work to do to achieve my goal.  In fact as it turned out, I had many tables to prepare as the examiners apparently needed these to prove my work in a more visual way!  Click on this link to my thesis Perspectives of the Autistic Voice: An Ethnography Examining Informal Education Learning Experiences if you are interested in checking it out.

‘Resolutions’ or whatever you call them should be achievable, with practice, with work, with determination.   Adding a couple of definites; things you will achieve without question, can also help with motivation.

One of mine in the past has been put my keys in the same place every day so I don’t lose them. Meaningless to most, but to me a lifesaver and an act which has saved my sanity. I still remember the time I was walking around the house and garden with my keys, loading my car with charity bags, and I dropped my keys into one of the bags by accident.  Luckily I didn’t take the bags to the charity for several days (I couldn’t find my keys to drive there) so I eventually emptied out all of the bags one day in desperation and found them!

Mostly I try to make meaningful goals which may help others in some way as well, even if it means I am calmer or less anxious and therefore a nicer person to be around.

In 2015 one of my goals was to finish and get published my book Autism and Martial Arts: A Guide for Children, Parents and Teachers. (The details are on my website home page) This was achieved with a lot of work and countless edits and proofreading which was exhausting.  I wanted to achieve this goal to help autistic children; to give them confidence to achieve whatever they wanted to do; to guide parents to find the best clubs for their children; to provide information for teachers to give the best possible experience in martial arts for autistic students.

So, for last year’s goals. One was to take my yoga further and gain more knowledge; I am now in the middle of my foundation course with the British Wheel of Yoga so I have definitely achieved that.  I am aiming for teacher training later this year.  Another made mid-year was to give up eating meat; this was for various personal reasons, but aspects of my health have clearly improved since then.  I am also currently in the middle of my second book editing and I will blog more about this as it gets closer to publication.

I also made several small and seemingly insignificant ‘lifestyle decisions’ some of which I will share with you copied verbatim from one of my many notebooks!:

  • No more skinny jeans unless stretchy!
  • Comfort is key and constantly fiddling is not stylish!!
  • When hair is good colour – don’t change it! (I still change it!)
  • Quality rather than quantity

Now these are hardly life-changing goals but I am sure there are plenty of you out there who feel the same way and write similar things in your notebooks. By the way for those of you who know me well, the last decision has even applied to my ‘notebook collection’.  Yes, I actually pared down my collection last year and try to use the same good notebooks for most things – quality, the ones with the pockets at the back and elastic.  I just add pen loops.  If you need to know about these pen loops, contact me.  They are wonderful.  I digress…

So now, I shall leave you to ponder your goals or resolutions or promises to yourself… I am off to work on one of mine for 2017: finish this second book before my editor emails me again!!

Don’t forget to check out my website www.theautisticvoice.co.uk

Until next time

sandra

HAPPY NEW YEAR

Hello dear readers

Just putting out a beautiful image for the New Year. Back soon for a new year of blogging. 

Sandra

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