Just putting out a beautiful image for the New Year. Back soon for a new year of blogging.
As 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…
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?
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…
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…
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:
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.
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…
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.
Until next time…
Having set out at the start of WAAW to blog each day about how autism impacts my life, I came to a standstill on day four and couldn’t find my way to blogging. It is interesting, I have been blogging about being autistic for many years now although never on a daily, or even necessarily on a weekly basis. My blogs have been about many things in my life, and not always focusing on autism specifically. I have never found my blogs to have a direct impact on the way I feel, but this project has done so.
On Tuesday evening, I found myself feeling quite low. Noting the way I felt all day and how I thought autism impacted me made me feel quite depressed. Usually I am a very positive person, and looking out for the negatives seemed to bring me down.
I have realised that I don’t dwell on the negatives associated with my autism, but simply focus on the positive effects. I achieved a lot of work on Tuesday as I tried to forget about noting negatives and used my heightened focus on my work instead. I overcame feeling low by having a massive cleaning frenzy in my office. I organised and rearranged, cleaned and cleared and felt tremendously better for it. Being so productive so early in the day also allowed me the time to go to my zumba class in the evening without feeling I should be doing something else. On the way I emptied my packed car boot into the local charity bins.
I actually think that my more recently simplified lifestyle and positive outlook is helping me deal with the more negative aspects of autism. I hadn’t realised how much until this week.
On Wednesday Joe and I had a business meeting in the afternoon and lunch out with them. Although I had spoken to one individual over many years on the telephone, the thought of lunch out with two people I didn’t know filled me with dread. I only enjoy eating out if I am completely comfortable with the people we are with. Added to that having to talk business while eating and concentrate for several hours… overload was expected, and I was dreading it.
My other nemesis… having to wear my autism t-shirt with smart workwear. By now I was hating this t-shirt – the logo (I usually hate logo bearing clothing), the style (I hate high round neck styles), the short sleeves (very unflattering) and the casualness of it. The only saving grace was the colour purple – my favourite colour.
Actually the people who came to see us were really lovely and friendly. I still felt awkward but not as much as I expected. Joe dominated the conversation to start with, regaling stories and ‘jokes’ I had heard hundreds of times over the years, but he was also anxious and it was his way of staying in control. When the business conversation started my focus began to go. It was not really something I was interested in although I needed to be. By then the bright lights of the restaurant had started to really affect me, I felt light headed and much of the conversation flew over my head. All I wanted to do was leave. I felt myself smiling in the right places but I remember very little of what was said now – less than 20 hours later. I was so tired when they had gone, I fell asleep for a couple of hours, and then went to bed two hours earlier than I would normally do. I even laid in this morning.
It is difficult to describe just how exhausting these situations are: bright lights, background noise, energy needed to eat, energy needed to focus on these people who are telling us lots of information about themselves, the business, decisions to be made, trying to remain polite and cheerful, temperatures going up and down, wanting to go home… Imagine everything which happens on the first day of your holiday, when you are travelling to a new country by airplane with children. That’s how just two hours of a business meeting feels to me. This is how unhappy I was!
This morning I decided I couldn’t keep dwelling on the negatives, and I couldn’t wear the t-shirt again today. Enough… I want my own clothes back. Next year I will get my own autism awareness clothing done… a nice soft sweater or something lovely.
Well what a revelation to me; now I have to think carefully about what to write. People generally don’t want to be depressed, they want to be inspired. Hmmmm I may need to pop out for a vanilla latte and think about this. Want to know the result of my thinking… sign up to my blog and find out the latest soon.
BTW (by the way), I have been supping on cucumber and lemon infused water all morning – I can highly recommend it. Yum yum.
Until next time…
PS Don’t forget to follow me on twitter @BealeEllis
The day started well having been brought tea in bed by Joe and a snuggle with my doggies first thing. I had the house and office to myself today so was looking forward to some productive quiet time. Then it hit me… an email from someone backing out of a deal which had taken a very long time to make. Hours spent researching, interviewing, and time out to ensure we had the right person to work with us. All to be let down with a one sentence email. I am rarely really angry, but this made me so angry. I had to go out but I was shaking as I drove.
Trying to remain calm I visited my mum; she was having a blind fitted I had offered to buy for her newly painted kitchen. Really it was about control, as you are becoming more aware, I like to be in control. Here I am with the ‘blind’ man and a miserable face!
After ranting for ten minutes with my mum about the situation, and then listening to another story about how my dad had been let down by people he trusted, I left hurriedly to go back to work.
When I get angry or feel out of control, it is as if I totally lose my co-ordination. I literally fell out of the driveway, toppling forwards, and hurting my neck again which was still painful from yesterday. This caused me to scream with frustration and pain and my mum came running. In seconds I went from angry to bursting into floods of tears. Just the one email that morning had caused such a range of emotions and physical reactions. It threatened to ruin the entire day I had planned out for myself.
Just one thing changing a planned or routine day for an autistic individual can cause absolute mayhem for hours or days afterwards. The second point here is that trust takes a long time to build up, and a second to lose. It can feel like betrayal even if it is simply a difference in perception or someone changing their mind.
It took quite a few hours and some intensive work for me to calm myself to a degree where I could try to resolve the situation in some way.
When I am anxious or annoyed I have a tendency to ‘nest’. I clean, I tidy, I clear, I paint. In the office I cleared out drawers and as soon as I got home this evening, I tackled a room in the house which had become really messy and needed a good sort out and clean (not my room I might add). I felt productive and the clearing was very therapeutic. Perhaps I should take up clutter clearing as a new business; it would really help with my autistic related anxieties. I love tearing up piles of paper; with the continued sound of tearing I can feel negative emotions fade away. All the way through this task which took some time I talked myself through the day, what had gone wrong, how I could put it right. If I kept this all inside my head, I would end up mad I am sure. Apparently ‘they’ (whoever they are) say talking to yourself is the first sign of madness. I personally think that there is so much going on inside an autistic person’s head, that not talking to yourself might make you mad so it is the better option.
As I worked in the office earlier and stamped the date on the work I was sending out, I smiled with satisfaction as I realised the date 4.4.16. It was a lovely visual pattern, 4, 4 and then 4×4. In fact this helped me come out of my dark cloud as I wrote this over and over.
I finished the day having watched yet another drama with a new autistic character, Dan, shown to be perceiving language literally which had me smiling again. Now just to shop online and then to bed for a well earned rest. Supermarket shopping online saved me wandering around a large crowded brightly lit store at the end of what has been a pretty traumatic day overall. Now I will just get my food delivered to my kitchen tomorrow morning instead. Lovely.