Home / Autism User’s Blog

Autism User’s Blog

Our new blog spot:

 

Jack

As far as I was concerned, we were cat people.  We’d had Tigger and Katie.  I thought a dog would be too much time and effort.  Due to dementia our birman cat Gizmo was causing us more pain than pleasure; howling throughout the night and suffering from fits.

After my mental breakdown in 2013 my brother Oli insisted we get a dog: “it would be good for Simon.”  He’d seen a photo of Samoyed in a hallway of his friend’s house.  My mum spent several weeks traveling to and from Gloucester to see Jack.  He had been born on 23 April so if anyone from Rugby, England wanted him as a mascot he’d be good!

On 15 June 2013 as I picked up my brother from Taplow, Jack came home.  What I saw in my dad’s arms resembled a polar cub more than a puppy.  Peeing and crapping on the floor aside, Jack behaved himself and went into his cage when instructed.

Hugging wasn’t for me in the past; the will to pull away was strong.  I want to hug Jack and when I’m alone in the house he sits on my bed.  He loves leg rubs and if you stop, he dabs you with his paw and yelp as if to say: “I didn’t say you could stop.”

Like drivers checking out your car, other dog walkers compliment Jack on his looks and cleanliness.  One old lady said: “you can come home with me any time.”  I wasn’t sure if she was talking to Jack or me.  When I feel angry and the stress builds up, walking Jack is a release.

Thanks Oli.

Taekwondo

After my mind had deteriorated, so did my body.  It was due to frustrations of being turned down job interview after job interview.

Lindengate helped.  It was great meeting Sian and her team.  However, I invented excuses for eating excessively.  Hey, I got out of the house and did something practical.  It wasn’t comfort eating, it was reward eating.  After gardening at Lindengate, I would go into the garden centre’s Costa’s for hot chocolate, bacon buns and Belgian spongecakes.

After months of that, I ended up being 93 kg, the heaviest I have ever been.

Fortunately I had begun doing Taekwondo on Thursday evening.  In January 2015 my mum had spotted an advert on the Missenden messenger’s back page about the Great Missenden Taekwondo school.  I had wanted to do a martial art for a long time in my life; the only martial arts move I knew beforehand were from playing Tekken games.  I couldn’t find a school where I could commit to doing it consistently.

The Taekwondo school couldn’t have come about a better time or better place.  The instructor David had been a member of Chesham Taekwondo School and had been practising Taekwondo since 2008.  2015 was when he started his own school.

When you start Taekwondo you are a white belt, meaning someone who has no prior knowledge of the discipline.  I am now a yellow belt with green tags, meaning the skills are developing and the roots are growing.

I learn something new in every class.  Part of taekwondo is performing tuls or logical patterns against imaginary attackers.  Visualisation definitely helps and David has worked out I learn that way.  So has another class-mate and the bo sabum (assistant) Harry.

Grading is nerve-wracking.  As well as performing patterns, you are asked questions on terminology like stances and parts of the arms when blocking.  My limbs shudder when answering questions about the patterns from an instructor.

Sparring too is another anxious time.  I have participated in tournaments and having been beaten in the ring, I turned to a sports psychologist.  He completely altered my approach.  I now treat the sparring gear as something ordinary.  At the last tournament, I made the first move.  Having not been confident playing contact sports at school, I didn’t dwell on hits during that sparring match.  After a punch in the face, I immediately retaliated.  David was impressed and he said you can’t teach that retaliatory instinct.

The school has grown to an extent that David will start hosting a second class during the week next month.  I now see exercise as an enjoyable part of the day rather than a chore.  Taekwondo gave me dignity when I wasn’t working. the school has been a blessing.

Taekwon!

 

 

Escaping with the Plants

On my way up to my great uncle’s house, I knew the front garden was going to be a pretty sight.  The finely trimmed mini fur trees, the bold colour of the roses, not forgetting the glorious impatients.  I didn’t know their names, nor did I know how they were able to look so good.  However I then heard a word that would go on to become very familiar in my life, “deadheading”.

As I expected, I was not disappointed when I arrived.  “Can I see your back garden again?”  I asked keenly.  After being granted permission I walked along the border of this huge garden and was hit by the rainbow colours.  A favourite of mine had a very strong scent, there could be no mistaking them, marigolds.  The desire in me grew its strongest yet.  I just had to get planting.  “Planting is the easy part, it’s the deadhunting that’s time consuming”.  Said my uncle.

My garden was barely the size of my uncles but it still had potential.  I only had one threat against me when digging out my borders in my garden, a threat that I had no idea how to tackle.  I had reached a crossroads, do I use a spade to plant pots so I am not as near the ground or do I beg someone to help me?

Then one day my nan brought down some troughs for my garden, “let’s get you started in a small way and see how you get on with it”, she said.  This was such a relief as I knew this would involve handing fresh soil so I could sit down and plant out petunias, marigolds and pansies without any problems with her help.

The bright wonderful colours of the petals were amazing.  How such beauty could exist is beyond belief.  The detail never ceased to amaze me.

Throughout the summer I tended to my pots and troughs ensuring they looked their best all through the season.  When the time came I took some seeds and emptied them into brown bags ready to try growing the next year, feeling like a new lease of life during the long spell of workless hours, I felt there was something to look forward to next Summer.  Then came words that I knew I would hear.  “If you’re going to garden, then you’ll have to get used to worms Daryl!”  Nan said.

 

By Darly Roberts

 

 

Andy Autism Blog

In this edition of my blog I said I would talk about “The initial post diagnosis period of assimilating the information and working out how it affects you and those around you, what help to seek and how to live from this point onwards.”

Although what I wrote above was rather wordy, it is somehow apt.  This period is when your brain is literally crammed full of facts and the implications surrounding your diagnosis.  To make sense of it all takes time and maybe a little guidance.

As we drove away from the place where I was diagnosed I felt a rather overwhelming sense of relief.  The specialist had confirmed that I am Asperpergian.  I prefer the term Aspie myself.

Now please not that I don’t say that I have Asperger’s Syndrome.  The reason for this is that it is not a disease, it can’t be caught and it is nothing “wrong”.  It is just different.

What followed my diagnosis was a period of very mixed emotions and adjustments.  Not only for me, but for my Wife and Family too.

I started reading voraciously.  Anything I could get hold of on Asperger’s.  The more I read the more I felt that someone was describing me on the pages.  No one Aspie fits all the traits, but there were many there I fully recognised in myself.  I was suddenly not alone anymore.

The first thing I needed to sort out the rather crippling anxiety I had been suffering.  I was pointed towards the Healthy Minds Service by my GP.  I was able to self refer and was recommended to a Counsellor who has some experience helping Autistic patients.  That was invaluable to me.  Within a couple of weeks I started Cognitive Behavioural Therapy (CBT).  Now this has worked very well for me for one simple reason; it works on pure logic.  I reacted well to the therapy and within a few short weeks I felt a huge weight lift from my brain.  I hadn’t realised but I was crippled from the amount of thoughts I was holding onto and processing in my head.  Everything I had ever said, every encounter, every experience were all in there, but being held rather than committed to distant memory.

I began a process of going through all these memories and re-evaluating them one by one.  Every toe-curling, cringing encounter I had ever had was there.  Every time I had said the wrong thing.  Every time my words or actions had been mis-interpreted.  Every time I was unable to make myself understood.

Any of these memories could pop up at any time and prevent me from sleeping while I relived it over and over again.

Now though I realised that these incidents were all explained by my Aspieness.  As each memory popped up I was able to re-evaluate it from a fresh perspective.  I began to forgive myself.  As I re-lived each one I applied Asperger’s to my behaviour or words and forgave myself.

I decided to be completely open about my Asperger’s.  I thought about how to tell not only my family and close friends, but the world.  I felt it was time to blow away some of the myths and misunderstandings of what Asperger’s and Autism looks like.

I decided to run a little quiz.  On my facebook page I declared that I would post a series of pictures of people and the quiz was to spot what each of these people has in common.  Isaac Newton, Mozart, Beethoven, Einstein, Daryl Hannah, Dan Ackroyd, Bill Gates and Gary Numan.

The quiz elicited many responses and seemed to capture the imagination of many people.  When someone finally posted the correct answer I made a post where I confirmed that all these people are Aspie, or showed many traits of Asperger’s.  And so am I.  I said that we can’t all be genius, but I dare to be different and am happy to stand up and say proudly that I am Aspie!

In the next instalment of my blog I will talk about sensory overload.  What it is and how I do my best to prevent it having a negative effect on my life.

 

I love my own bed… (by Daryl Roberts).

 Describing it to girlfriends was very hard, understanding it myself was equally as hard. The overwhelming desire to sleep in my own bed, on my own has always been strong. Women have accused me of only wanting them for “one thing” despite my protesting that this is not the case.

At first I could never understand where they were coming from because I knew for certain in my mind what I was thinking. Back in 2012, one girl tried to understand it and would happily let me leave her flat in the early hours of the morning, without too much fuss. Although appearing to be happy on the outside, one night her mask slipped and I would detect the disappointment in her voice. “Do you not want to stay and cuddle up with me?” she asked.  I found myself replying “I don’t feel comfortable in here though,” as I was quickly getting dressed.

I then opened her bedroom door to the loud creaking sound it would make in the middle of the night, a momentary burst of frustration flooding through me due to the fact that I had once again forgotten to bring my canister of WD-40 round. I bid her goodbye on my way out of the room, to be met with a sigh, I was relieved I couldn’t see the look on her face as the only light coming into the room was from the streetlights outside.

As I opened her front door a wave of guilt started to build up inside. I stopped still, halfway out the door, before stepping back inside. I turned to face the hallway, thinking to myself should I go back to her room and be with her? I felt my heart rate speed up as well as my body feeling warmer. I have always hated indecision, doubting myself as to if I’m doing the right thing. I was about the close the front door but then pulled it back once again. This time, stepping through and shutting the door. That sinking feeling of not being able to change my mind and knock on her door without waking her kids up was enough to bring on that familiar guilty feeling.

That same feeling stayed with me during the walk home in the dark whilst glancing around to make sure there was nobody suspicious lurking in the shadows. I kept thinking to myself, ‘Why can’t I stay with her, why?’

As soon as I got back home, that guilty feeling soon lifted feeling content now that I was in my own bed.

By Daryl Roberts.

________________________________________________________________________________________________________________________________

Hi everyone. My name is Andy. I am 53 years old and was diagnosed with Asperger’s 2 years ago. Quite a revelation I assure you!

I learnt that there are three distinct phases that one must go through around the diagnosis;

  1. The crisis leading to you seeking a diagnosis.
  2. The initial post diagnosis period of assimilating the information and working out how it affects you those around you, what help to seek and how to live from this point onwards.
  3. Being at peace with who you are. Managing how your Asperger’s affects you and using the gift side of Asperger’s to your advantage.

It all came to a head for me after years of being frustrated and constantly stressed at work. I had found that when I had my own office I would shut the door, put my music on and I could work to an almost manically efficient level.

Then the management interference started. I was told I had to share the office with a colleague. He liked to work totally differently. He was social animal and would love to chat. He would leave the door open adn invite people in for coffee. Although I didn’t understand why it was completely stressing me out.

The crunch for me came when they decided to centralise my Dept to another town. I was to share and office with 3 other people. As the date of the move came nearer I was panicking and becoming more and more stressed. I instinctively knew that the new environment was going to prove impossible to me. I was struggling to explain why, even to myself.

I arrived. The new office was cramped, the people were friendly but very noisy. I couldn’t get a radio signal to distract myself with. It was situated in the busiest corridor of the building and people would gather outside the door to chat. I found it impossible to concentrate.

I lasted 48 hours. I had a breakdown. I was off sick for 11 months.

During this period I started to read. I always knew I was somehow different. Now I started to wonder why and what was a reason behind my seemingly abnormal need for a unique work environment. I suspected I was Autistic, but didn’t fit what my mental image of someone with Autism is.

I knew that far from having speech and language difficulties as a young child I was the opposite. I had early speech and was reading before I went to school. I then learnt about Asperger’s and read the traits. I realised that they were describing me! I found an online Asperger’s test and scored well above the Asperger’s threshold.

I was called in to the Occupational Health Dept at work for a Psychiatric Evaluation. These showed that I was most likely Autistic along with either Post-Traumatic Stress Disorder or General Anxiety Disorder. I felt the results of the tests frightened them. They wouldn’t assist me in obtaining a diagnosis, told me to go to the NHS and withdrew all support. My employer then started trying to force me back to work as I had no diagnosis.

My GP was really supportive. He tried his very best to get me the diagnosis and help that I desperately needed. Unfortunately the Mental Health Team reported back that they weren’t able to help me unless I was in immediate danger of suicide. I wasn’t, but was never assessed to see if this was the case.

MY GP then asked me if I was prepared to pay for a diagnosis. I readily agreed and within days I saw an Autism Consultant. A one hour meeting confirmed that I do indeed have an Aspie Brain.

Long story short, a senior manager took over my case at work, consulted with the National Autistic Society and found me an Autism Friendly Environment to work in. I was back at work and was incredibly efficient and productive for the 12 months I stayed until I took early retirement.

In my next blog I will talk about what happened in the initial post diagnosis phase.

Thank you for reading.

Andy

 

To find art from users with autism, please click the link below.

Autism User’s Art