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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

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

DOGS ARE MY COMFORT

IMG_0079As an autistic individual, I can honestly say that my two little dogs are what get me through the day sometimes.  Whether it is for a quick cuddle, or a sniff to heighten my senses, or even a long hug for my benefit probably more than theirs, they are always there for me when I need them.  In return they are spoilt rotten and know exactly how to get around us.

Of course sometimes they are the cause of the stress; an unwanted wee, snatching any tissues whenever they can, pinching the last bite of a sandwich from my plate when I get up to answer the doorbell (Rosie!).

I have been unwell for nearly three weeks, following a several week period of overload.  Today I became really stressed after work and just needed to hold them.  They let me, even when I had a shouty fit at one point (this does not happen often for me but today I just let go).  I sometimes feel bad that they have to listen to these meltdown episodes but I suppose they are used to them and just seem to know instinctively that we need a cuddle or a kiss.

They are always here if I am unwell, having a fit of tears, or just want to talk to them.  I know it sounds bizarre to the non-dog owners among you, but I swear they understand and know exactly what I need.  It’s more than I can say for many human beings.

So thank you with all my heart to my babies, Holly and Rosie, for being there for me and for my husband Joe who also needs them.  Happy birthday for Friday Holly; 10 years old!

Until next time…

sandra

POST GRADUATE CERTIFICATE IN AUTISM

20120626-223607.jpgHi Readers

Today I especially welcome the students of the London Post Graduate Certificate in Autism and Asperger’s. I write this the night before the last day of the course, when I am scheduled to present.  Sadly, I have been suffering with a chronic chest infection for a week already and I am in no fit state to travel to London right now.  Therefore I have had to speak to Dr Luke Beardon, Course Director and we have mutually agreed I won’t travel this time. By the time I publish this, you will have just finished and be about to leave for home after three days of intensive work.

I love to present to this course and have been doing so for some years. The course literally (I don’t use this word lightly) changed my life.  It was at the course, during the sensory lecture especially, that I had a lightbulb moment and realised that my darling husband had Asperger’s.  So much of what was being said was relevant to him.  After some time for both of us to adjust to this possibility, he sought clinical diagnosis.  A few months later and I started my doctorate at Sheffield Hallam; it apparently became clear to many that I might also have the syndrome.  Later that year I was also diagnosed.

This course for me involved three separate trips to Hertfordshire (192 miles round trip), followed by two papers of based on research and literature reviews. The course opened my eyes to the good, the bad and the ugly of autism and even more of the attitudes others have towards it. It enabled me to really look at my teaching, to listen to my students and to explore the autistic teacher’s experiences as well.  It was a good grounding for me to move onto my EdD, and I thoroughly enjoyed it.

As you finish your teaching day, and leave your new found group ‘siblings’ (thanks Jenni for the phrase I know you use for your fellow autistics) ready to go off and get on with your research, may I give you a few tips from experience?

  1. Be really clear about what you want to research, and think how it may fit into any future study (Masters and beyond).
  2. Type up your references as you go – we always think it will be quick to gather them at the end, but believe me… IT ISN’T and there is always one missing which will take you hours to find!
  3. Take note of the list I offered in the second of my presentation slides within your pack. This is so important when considering, working with, researching or writing about us autists ( I hate both terms of aspies and auties). (Apologies, the rest of the slides were not offered as it would have given my game away; as it turned out this was futile).
  4. Read as much as you can around your subject. If you happen to be researching any kind of sport, physical activity or martial arts, my third slide may be of use. Also consider my doctoral thesis which uses ethnography, reflective practice and auto-ethnography as research methods.  The link to this is on my website.
  5. Use Blackboard. I found it really useful but was so frustrated that it was only utilised by a few. As a distance learning course, I really needed to debate certain issues with someone in the know, and there never seemed to be anyone else available.
  6. If you have questions, are unsure, or need support and advice, contact your tutor without fear or anxiety.
  7. Enjoy the process.

I am so sorry I wasn’t able to be there for you today. You are very welcome to contact me if you have questions, comments or just need to sound off about an aspect of your study.  You can find me via this blog, of course; my website www.theautisticvoice.co.uk; twitter @Beale/Ellis or Facebook www.facebook.com/theautisticvoice.  All of these links are on my website as well.

Hope to ‘see you’ here soon

Until next time…

sandra

NETWORKING: AUTISM FRIENDLY?

indexHi Readers

I am writing this blog in the nearly empty meeting room of large London solicitor’s firm.  There are a few people scattered around, drinking coffee and pretending to be busy with emails; a couple of them talking loudly… perhaps they are important?!  I wonder if I have even been noticed, scribbling away in my notebook?

The rest of them are standing huddled together in a small room next door; juggling briefcases, handbags, and cups of tea while they seek out others to pedal their wares to.

There are those who love these networking opportunities, trying to speak to as many people as possible; spreading swarms of bacteria as they shake numerous hands or forbid, air kiss to demonstrate their popularity. They want to be seen, or heard, and are fantastic networkers. In my experience they are usually the ones to avoid; consistently talking about themselves and their business (sport, in today’s case).

I may be here representing martial arts but I really don’t want to talk about any other sport. If it’s not relevant to me, why waste time and ‘ear space’? It will only overload my senses, and I need to keep those clear for the next two hours to keep up with the meeting we are actually here for. I find it difficult to appear interested when I’m not.

At the end they will all congregate again to juggle curled sandwiches and pieces of fruit; not me. I will disappear as soon as they close the meeting. In the spare outside there are a plethora of street vendors slowly cooking their fresh ingredients.

I shall be eating my lunch in the fresh air without someone explaining how footballers justify being paid millions! I shall avoid this somewhat controversial view – I admit I am not a football fan at all – to continue to look forward to some tasty morsels later.

And so with a minute to go, they all start piling into the room, having exhausted their voices, we hope, in readiness to listen.

Wish me luck

Until next time…

sandra

DOCTORAL STUDY: THE SUPERVISOR

holly-books

This was my dog Holly reading my research notes during  the process.  Note the inspirational quotations on my wall!!!

I have been keeping an eye on social media recently and have found that many autistic individuals studying for a PhD, EdD etc, struggle with supervisor experiences. When I was in the middle of the process, I supported another student who had a, shall we say, less than cooperative supervisor.  He was often left feeling useless and frustrated at the way his work was being supervised or not as the case may be.

I was extremely lucky. I had chosen my university, based on two things alone.  Firstly its reputation in the field of autism, and secondly on the person I had earmarked as my supervisor.  During my initial interview to be taken on the course, I had stressed that my application was based on this person becoming my supervisor.  At one point after I had started it seemed this wish was not to be taken into consideration, but I remained determined and I would have left the university if he had not been appointed to me.

Let me tell you why I was so adamant; and why you should be very careful about who supervises you through the process of doctorate study.

The success of the whole process, in my opinion, rests on having good support. This person is with you through several years of study, anguish, contemplation and doubt.  You need to know that this person will support, advise, listen and give you competent and sometimes comforting suggestions to the inevitable dilemmas which will surface.  This person needs to allow you time to sit and mull over ideas, suggest ways to improve your direction, and encourage when you are feeling everything is just too much.

For students who also happen to be autistic, this choice of supervisor is even more important. I list here my thoughts on supervisor choice for you to consider:

  1. Do your research before you start the course. Check out universities in areas you are comfortable travelling to. Don’t allow the journey to cause you any more stress than you need to. I chose a university 228 miles away, but to me getting used to this journey was worth it (I will blog about this some time).
  2. You should arrange an initial meeting with any choice individuals, just an informal chat about your initial ideas and reasons for completing a doctorate. It is essential that after this initial meeting you feel completely comfortable with the way the person engaged with you. I find autistic individuals usually have a sixth sense about a person quite quickly.
  3. Tell the individual what you find difficult, what you need from the tutorials and other meetings, and how they can help you through the process.
  4. Arrange for deadlines – this was absolutely crucial for me. For each section of my doctorate, I planned deadlines of when I would finish a task by; all my plans were sent to my supervisor and he would write them in his diary, pencilling out time to deal with them within an agreed timescale ready for feedback to me. I cannot emphasise how much this helped both of us during the process. It meant I did not have to sit for days or weeks worrying about how I was doing. We had agreed on how quickly I would hear back and he stuck to that over the four years.If I was struggling with a deadline and this did happen occasionally, mainly during the research phase as I experienced overload on a few occasions (more in another blog), I simply emailed my supervisor to explain and we postponed it. We always chose another date though, never leaving it to chance.
  5. Before each tutorial meeting, we agreed a plan for discussion. It may have been issues I needed to mull over with someone, or difficulties I was facing. Often he gave me suggestions for changing, say, my writing style in a particular section, or correcting my referencing.
  6. Ask your supervisor if you can record the meeting. I didn’t record the first one and I struggled to remember everything which was said. Despite making notes, sometimes you just need to listen to what is being said, or during intense discussions, making notes is not always easy. Listening to my tutorials back later was useful. I often did this on the way home via earphones and made necessary notes from the recordings.
  7. Find a place which feels comfortable to have your tutorials. If you are easily distracted, as I am, meeting in the university café is not ideal. One of my tutorials near the end was in such a place and we were constantly interrupted by other staff, students, raucous laughter, clanking cutlery; not ideal as we were discussing selection for the viva panel!
  8. Keep in touch with your supervisor regularly. Even if there is not a specific query, it is good to just check in. Let them know how you are doing, have you found a good book which is helpful, did you have a breakthrough, are you feeling like throwing a brick at your computer? They can’t support you if they don’t know what is going on.
  9. If you are finding that your supervisor just doesn’t get you, or is causing too much frustration and pain on a personal level (there is always frustration on a study level!), speak to the organiser of the course to see if there is a way to change before it gets worse. Bad supervision will give you a bad experience and for autistic individuals this could mean giving up… or worse
  10. Try to enjoy the process. My supervisor supported me to the very end… and beyond. He was there sitting behind me during my viva, and even when we left the room with me in tears (yes I had passed) he was there ready to take me for a celebratory drink.

I am still very much in touch with my supervisor and now my friend. We support each other, recommend each other and still try to work with each other whenever possible.  I won’t embarrass him by naming him, but I know that many of my twitter followers are lucky enough to have the same person supervising them.

Take care…

sandra

LISTEN…

IMG_2694Hi Readers

Today’s blog was inspired by two separate catalysts.  The first was the quotation in the photo – this was a sign I was given by a friend for my birthday last month.  It is one of my favourite quotations, from my very favourite book ‘To Kill A Mockingbird’ by Harper Lee.  I used the quotation in both my doctoral thesis and in one of the papers leading up to the thesis.

The second catalyst was my husband, Joe.  For many years he has had partial hearing in one ear, and tinnitus in that ear, and partial hearing in the other ear.  Annoying for any one, but for a person with Asperger’s incredibly debilitating, especially in situations where there are high levels of noise.  Unfortunately, for the past couple of weeks, he has had virtually no hearing in the better ear.

Today, after a few days of olive oil drops, he had his ears checked and syringed and he found out he had what seemed to be a 40 year build up of wax in the non-tinnitus ear.  He couldn’t believe the noise levels when he left the doctor’s surgery.

I had never really thought that much about how much he was suffering (and I never use this word lightly) with his lack of hearing.  I moaned when his music or the news was on too high, when he shouted in restaurants or if he made a phone call when he was on the train.   I had never really considered his discomfort from his point of view.

I would consider myself an astute, intelligent and compassionate person; yet I feel ashamed that I hadn’t realised how much this hearing loss was affecting other areas of his life.  It was apparently the cause of constant depression; I knew he had this from time to time, as is quite common for autistic individuals, but I didn’t realise his hearing loss was worsening this.  As I sit here now I think back to situations, to events, to his moods, and I wonder how many of these things were impacted by his hearing loss.   Worse still he had no idea that much of his hearing loss was caused simply by a large lump of ear wax which could have been removed at any time.

If you can’t imagine how this partial deafness feels, think about when you get water in your ears while swimming, or under the shower; he described the loss as being permanently water logged.  I freak out when I get water anywhere near my ears (or other areas of my face for that matter), so I finally understood how bad it had been for him.

My lesson for today then, is to think more of how other people are feeling, or may be ‘suffering’.  Listening to others’ perspectives is so important; not only will we learn new lessons, but we may find ways to help others; surely a wonderful and essential goal for us all?

Until next time…

AUTISM AND FREEMASONRY

Hi Readers

A different subject for you, along with apologies for the tardiness of my blog.

My husband, Joe (also with Asperger’s) is a freemason and has been through the Master’s Chair of his lodge. It was pretty stressful for him (and me), so he took a break following that year. Recently he has returned to active freemasonry and to our shock he is now about to be promoted to grand rank, quicker than most.

I shall attempt to reveal how an autistic person may be affected within freemasonry as general autism statistics would suggest that there are likely to be others like Joe.

Joe had a desire to join freemasonry, because one of his obsessive or narrow interests is history and tradition.   He absorbs facts like a sponge.  He spent many years studying freemasonry and its traditions before contacting Grand Lodge and consequently being introduced to his local Lodge.  He knows more facts about freemasonry than many more experienced freemasons (or brethren as they are called by those ‘in the know’). While some may think this is strange, or even try to belittle him for it, others admire him for his obvious passion and commitment.

He loves the tradition of ritual and the ways it is performed, which I understand he does with military precision.  He has been complimented on this often. He dislikes sloppiness because if there are correct ways to do things, autists believe they should be followed exactly.   They thrive on correctness and routine.  Paradoxically this is where some aspects of freemasonry can be more challenging.

Learning needs to be systematic.  Joe has to learn ritual, one part at a time.  Once he has learned a part, he can then move on to the next part, and then the next part.  It is difficult for him to move around haphazardly before he has learned the words properly.  He will just get confused, panic and then likely miss lodge meetings or practice because he feels overwhelmed.

If there is ‘unrest’ or ‘incident’ at an event it is likely to affect an autistic individual severely. They tend to be either hypo or hyper sensitive and react to situations quite differently, often seen as dramatically, to non autistic individuals.  Autists may find interpreting others’ comments or reactions difficult and can often misread situations.  They can be easily upset especially when they are feeling tired, stressed or panicked by situations.

Social occasions can be overwhelming and you will often find an autistic person sitting alone, calming himself down.   Joe uses a tactic to get over this discomfort, which may be considered unusual for the autistic individual.  He approaches everyone as quickly as he can and speaks to them before they speak to him.  This way he is in control of the situation, what he says, how he needs to react.  It is a way to reduce feeling cornered and under pressure in social situations.  As he is a leader, within top management, within his professional career, this tactic has worked well for him and enables him to network superbly.

I, on the other hand, do the complete opposite given the chance unless I know people, in which case I imitate Joe’s methods if the situation allows me to do so.  Imitation is something autistic individuals do a lot – it is their way to learn how to behave in social situations.

As a freemason’s wife I struggled when Joe first entered the Lodge.  I had to attend lots of social events with people I mostly did not know.   The wives of Joe’s proposer and seconder, were told to look after me.  They did, and they continued to do so throughout most of Joe’s masonic career thus far.

At this point it is worth mentioning that Joe’s masonic break after his Master’s year was forced pretty much for reasons which caused him to become overwhelmed with events which spiralled out of his control, through no fault of his own. We had a fantastic Master’s year, running many events both large and small, and managing to raise £5000 for a local charity supporting children with disabilities and their families.  We had tremendous support from his own Lodge, and from some other Lodges within Kent.

At the end of the year we were both physically, mentally and emotionally exhausted and a break was desperately needed by us both. One such event is tiring enough for anyone, a chain of events in just a few months experienced by a couple with autism was a challenge akin to climbing Everest twice in a month.  To add to the pressure I was also in the throes of completing my doctorate in education.

Despite the immense pressures we loved his Master’s year and I loved the dressing up and organising all of the events. Being a dancer and having been part of the competitive world for so long, Ladies Night was made for me.  As the organiser, my social phobias were lessened as I could act a part; be another person.

Autistic individuals can sometimes seem rude and seemingly ignorant.  Often there is a lot going on, lots of noise, lots of talking, lots of information, and autistics become overwhelmed easily.  One way of overcoming this, if it is not possible to leave the situation and find a quiet space, is by ‘switching out’ and appearing to be ignoring what is going on.  It can be a way to avoid sudden rage or episode of anxiety.  Be patient, they will eventually ‘come back’.

You will also find an autist is very exacting about detail; perhaps the directions to a lodge, the invitation to a lodge meeting, what he or she should wear. This is not just them being pedants, but the detail is essential for them to process the situation so that they can accept it as fact.   They will get anxious about travelling, about being told one thing and then it being changed at the last minute.

If you know a freemason who is autistic, this essay may be useful to pass around his or her masonic community. If you know of or are a freemason, this will be useful information for you.  Not everyone is the same and we all need help and support from time to time. Autism is not an excuse; it is simply a difference in the way the brain is wired, which cannot be altered.

You can find Joe’s masonic ‘ramblings’ at www.facebook.com/uniquefreemason or on Twitter @UniqueFreemason

Until next time…

VW Bro Joe Ellis

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