Masks: to wear or not to wear

I thought I better complete this entry from 2020 that I started....

 I want to make clear from the outset that I think people should wear face coverings if they can reasonably do so in their bit to tackle Covid-19.

I am extremely aware that if we don't all pull together, we can't get our lives and society back to some state of normality. 

That said, for some people, wearing a face-covering can be significantly distressing.

And this is me. I went shopping yesterday and today I have a migraine. I feel rough. It is the stress of yesterday that has come out. I am so used to migraines that I do find an ability to get on with it unless my vision goes, hence my ability to write this now. I'll probably pay for it later... But anyhow...

I find the masks very difficult to handle. It is not because I am bothered so much about how I look but its the sensory issues that they cause. 

I will go through in turn the different sensory issues:

Taste:

This one doesn't apply to me!

Touch:

The mask or face-covering obvuiously touches one's face. I find this difficult because the sensation is very overwhelming and smoothering. It covers most of my face and I can feel claustrophic by the fabric. I also wear glasses so having the elastic around the ears in addition to my glasses feels too much. I am sure we all dislike heat from the masks too and that can add to the claustrophic sensations.

Sight:

As I wear glasses, I aleady have to spend a lot of mental energy trying to look beyond the frames of my glasses I see around the edges of my vision. I am used to it but it is something I have had to develop a tolerance to over the last 20+ years. I find the additional visional information of the top of a mask really difficult and it further makes me feel smoothered. Add in the problem of glasses fogging up, its rather disorientating.

Hearing:

I can't well explain it but I feel like my hearing is impaired by the mask wearing. I am finding it harder to communicate with people even though my ears are not  covered. I don't think it is as simple as the other person's voice being muffled by their mask. I am theorising that my brain is trying to commodate the sensory overload by turning off some senses and hearing is my causalty.

Smell:

I am not sure about this one. Reduction in smelling is not providing to be a problem. It's just important that the mask is clean so it doesn't get smelly and fabric softener used is not too overwhelming.

The sense of space (Proprioception):

I am definitely feeling clumiser in the way I move around and not sure where I am in relation to other objects. I cannot comphrend how anyone can drive a car with a mask on as it makes me feel like I might drive into something!

The vestibular system (balance):

I feel a bit out of balance because I feel my vision is compromised as well as my sense of touch. Its a surreal feeling as I regain my sense of balance (it isn't great usually!) upon removing my mask. It is weird to say that wearing a mask makes me feel a bit dizzy.

Internal feelings (Interoception):

The sensory overload situation caused by wearing a mask makes me much more hyper sensitive. It means that I am much more intolerant to my internal system, i.e. feeling hungry, needing the toilet, pain, etc and being unable to immediately tend to those bodily needs will make me a seriously grumpy person. It trigggers a strong desire to run away and deal with my internal needs to want to right myself and get back to a calmer more peaceful state.

Conclusions

What do I do?

Masks upset me. A lot. I try my best to not go out when my tolerances are low as I am then not in a good place to tolerate a mask at all. I have to keep my shopping trips short and that is annoying as I can't buy what I need in one hit.

But I am very aware of the need to not spread the virus either. What I have decided to do is make the right and responsible lifestyle choices so I am not mixing with groups of people and doing high risk activities, that way if I had to go shopping not wearing a mask as medically exempt, I can be confident I have not created more additional risks to people. 

The main issue is that people aren't very understanding of hidden disabilities on the whole. I have read the nasty comments about disabled people staying at home. The other day I was verbally confronted by an angry cafe worker telling me I had to leave the premises as I wasn't wearing a mask whilst his was under his chin, as he walked towwards me violating the 2m distance rule. There was no signage about mask wearing. I haven't the energy to deal with such idiots who think we can mindread their new rules of how to deal with a self-serve fridge of soft drinks without any notices. Its put me off entering a place where the rules aren't clear. Heck, its made me feel very uncomfortable for not wearing a mask for the risk of people having a go at me. 

Frankly, that cafe worker was an idiot. He couldn't see the ridiculous double standard that was literally under his nose.

The main thing I think for someone who cannot always be a mask is to be responsible about it. Keep myself out of high risk germ spreading scenarios, wash hands a lot and purposeful testing so that I never am out and about when unwell.

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School reports: spotting the autism

I was going through some cupboards and found a folder of old school reports. Some were from primary school and some from secondary.
I decided it might be useful to see if there were any clues to indicate that I had autism. After all, I went on to have a diagnosis of Asperger's Syndrome in my mid-20s and it's something that would have been present throughout my childhood too.
I have copied out quotes from the reports.

Primary School

• She does not always listen to instructions very attentively and is apt to day-dream.
• Art work remains immature (!!) Poor motor control and finds drawing accurately, cutting out smoothly, etc., very difficult.
• PE - Finds all ball skills extremely difficult. I have dyspraxia.
• She has strong opinions and will voice them readily in discussion. She is not swayed by what anyone else thinks.
• She sometimes finds it difficult to concentrate on aural work. I do have sensory overload problems and too much information can make me shut down.
• It took time for her to settle into a new class routine as she initially seemed unhappy at new friendship groupings. I guess I was a bit resistant to change?
• She writes very imaginatively.
• She is very much an individualist and likes to fully understand each task before she works on it. This makes sense because I like to know everything about something.

Secondary School

• Occasionally seems to be in a dream when instructions are given out, but once she knows what to do she gets on well. That'll be the sensory overload.
• She is very independent in spirit and in behaviour, and on the whole this is no bad thing, but it can be a handicap during some science experiments when there is not enough apparatus for people to work on their own. Enquiring mind. I do like my own company but this was during my first year of secondary school. I didn't know anyone in my form well or at all whereas the others had ready-made friendship groups imported from their primary schools. It is hard to join existing friendship groups but even harder for someone with autism.
• Quiet, conscientious worker. Single-minded. I am a determined sort of person and will give it my all when I am focused and want to. 
• Music - She needs to try to work more cooperatively in a small group; she does not always fully grasp the requirements of the task given, and needs further explanation before she can proceed - possibly this is because she tends to let her mind wander. I don't think I necessarily heard the task correctly and understood it because of my sensory overload and taking instructions literally. Sometimes the music tasks where too abstract such as compose a music piece to reflect time. I remember that well and thinking I dunno, this means nothing to me so I just added some banging on a triangle to suggest a clock striking. The work was considered rather unsophisticated but I didn't have much of a clue of how to meet the learning outcomes.
• She is underachieving this year. She is disengages herself from class activities to a startling extent, and does not work well at all as part of a team. This year 8 English teacher regularly upset me. I did brilliantly well with my Year 7 English teacher who praised me and got me out of my shell and I wrote lots of creative and exciting bits of work. The following year this dragon came along and I felt I couldn't be me. I felt wrong all the time so I withdrew. My year 7 teacher taught me in year 9 and was horrified by how much I had not progressed. 
• PE - she appears to have difficulty co-operating with her peers. I didn't like PE because I felt that the picking of the teams were unnecessarily cruel because two sporty popular people were given the posts of team captains and it was always horrible to be one of the last to be picked. I felt like some bloody ball and chain on their otherwise great netball/hockey team.
• Science - she works quietly and on her own most of the time. She can sometimes show some reluctance to do an activity, particularly those requiring group work or presentations. Yup, the loner/poor socal skills thing.
• Written work thorough. I have a great attention to detail when I put my mind to it.
• I have been particularly pleased that a pupil who is shy by nature has made such an effort to take an active part in lessons (GCSE Sociology). Its easy why - I liked the teacher who plainly liked me as it was clear I loved his subject and we both shared the dislike for people who don't want to learn to the extent that they spoil it for others. Interestingly, I met him in a pub in my late 20s and he remembered me, thanking me for giving him all my typed up GCSE and A Level notes.
• She produces a nice tone on the recorder :p
• It appears that she is constantly making excuses for herself in some lessons. I wonder why an able girl says that she is not able to learn something? (GCSE - Head of year) I wish I could remember what it was that I said I couldn't learn. 

Sixth Form - A Levels

Theology

• She has suffered some recent setbacks in Old Testament. I wish I knew what that meant, although it must be referring to the module on my Religious Studies course. I think it was a bit information overload and intense since we were analysing verses out of the Bible on themes, such as human destination, God's identity and worship style. We were looking at the OT to see how the view of life after death changed is no small task for a 16/17 year old. I remember how we studied Moses and the burning bush and how God revealed his name. 
• Her greatest problem is getting her good ideas down, in a logical order, whilst working at speed.
• Has a rambling approach to essays
• She makes many interesting and very individual verbal contributions in class.

Business and Economics

• She is producing work at a variable standard - if at all. I found that if I didn't have an interest in something, I would be totally turned off. Mind you, I wanted to study A Level Economics but there wasn't enough students so we got put in a Business and Economics combined A Level class which wasn't what I wanted to study. 
• No effort to participate or contribute to discussion. Boring subject.
• Surprised by a high grade in the mock exam. I can pull things out of the bag at last minute if I have to.
• She must ask for help if needed.

Sociology

• Evidence of thorough revision
• Never afraid to ask questions and take part in discussions. 
• Her contributions are thoughtful and always to the point.
• Determined student
• Well structured written work and focused on the questions
• I just liked the subject and teacher so I was in a safe place to be me and not allow others to put me off my enjoyment of the course.

Maths

• She needs to be much more open about her difficulties, seeking support outside of lesson time.
• I gave up this course as I couldn't process getting A grades in Statistics and ungraded in the other units.

Overall

• She can always be relied upon
• She sometimes appears to be very negative about her work.
• She is a quiet, thoughtful and loyal member of the form.
• She has a very strong sense of what is right and wrong. 

Conclusions

Primary school was a largely structured environment full of rules. It was a place in which I felt relatively safe so I think I ticked by okay.

Secondary school was not quite so. We were asked who our friends were during the applying for high school process. This was to work out where we would be placed into classes at high school but I wasn't placed with anyone who was a good friend and it made for a difficult first year. Alas also some of my primary school chums were off to other schools too. Fortunately we had enough demand for the school to make another form for year 8 so we got reshuffled. I think this is telling in my school report because I was unsettled again as I found my way with the new class so some progress I made went back during my second year of school, namely in English. The shuffle was good in that there were some lovely people from primary school in my new form class but also some difficult people too. It made for a challenging school life.

It seems apparent to me that my ability to comprehend spoken instructions were impaired. I know this to be true because any long dialogues can be hard for me to process and I can forget what has been said. Given that the teachers recognise that I might need it repeated, and after which I get on well with my work, it is surprising that this wasn't implemented. It would have been much more useful if the teacher had written the task on the board for those of us who have information overload problems and sensory overload regrading sounds so we could read through the task in our own time.

It is apparent that my motor skills were poor in both art and physical education but this was due to my Dyspraxia. I also had help at primary school with my handwriting because I didn't find it easy to hold a pen. I remember seeing a lady each week for specialist support. 

As I got older in secondary school, I found myself to be in some lessons with my form, which were mixed ability, and in classes that were streamed by ability. It seems obvious to me that where I showed a lack of wanting to participate in group work this was where there wasn't anyone I wanted to pair up with. I never really put myself out there to make friends because I was perfectly happy to be by myself but it was obviously problematic when I had to. I never liked group work much because I resented how some people could coast along off the back of other people's hard work. It bothered me how some wouldn't contribute. However, some of my later classes I shared with my brother so we often worked together on things too. It took some of the social difficulties away from me through having an ally. 

"It appears that she is constantly making excuses for herself in some lessons. I wonder why an able girl says that she is not able to learn something?" (GCSE - Head of year)

We have the answer now. I wasn't making excuses - I was telling them that I was having problems and no one listened. I didn't know about autism and I certainly didn't think I had any learning difficulties. I don't think in the mid-90s secondary schools were really understanding autism in intellectually higher functioning girls. We only started having teaching assistants around this time in mainstream schools and that was for children with physical difficulties. It was a time when Special educational needs and disability (SEND) wasn't on the agenda and teachers perhaps were blaming things on the student's attitude rather than factors beyond our control. I went through a phase of anger that my schools never picked this up but they were a product of their time. I have learnt to let much of it go.

Whilst I don't see masses of hints about my autism, it is clear that it was present in my schooling. I wonder how different life would have been if I had known early on? I guess what I can take from this is that no one accommodated my needs, such as it is after one leaves education. As tough as it was, it must have helped me enormously in learning how to deal with issues off my own back and find my coping mechanisms. And perhaps that has been a good thing for me.

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Dealing with lots going on at work: how to get organised

Some weeks I feel quite content because I don't have lots of things going on. I may have big things but not a long list of stuff and I don't like long lists...

It's when my to do list becomes the length of the weekly shopping list that I become panicky and I don't know what thing to do first. I get mentally overloaded by everything I need to do so I sometimes ignore things, hoping they'll magically go away. I end up burying my head in the sand because I am so overwhelmed by what I have in front of me. When deadlines approach, my utter hatred of failure and messing up puts me into overdrive and I meticulously work through the most urgent of items at the last hour.

But this approach put a lot of stress on me. I find that it triggers migraines and makes things all the more unproductive. I don't like it so I do what I can to avoid things stacking up in the first place. I believe that prevention is the best way to avoid a lot of the autistic meltdown/shut down reactions, if that is at all possible!

Yesterday I felt like it was getting too much at work. I had tasks coming in from one manager and another lot from another manager. All the tasks felt urgent and my head was swimming with so much to do and not a lot of clarity. So I decided I would be methodical and spend a bit of time to work out what I had to do so I could work with a bold aim in mind.

I use Microsoft Outlook for my work e-mail and I use the flag tool (follow-up) to help me identify work I have been given and I can set myself a reminder attached to the e-mail so that Outlook automatically reminds me when things need to be done. The idea is that e-mails can be "flagged" with reminders and I can colour code them with categories as well based on the type of work I have been set for my categories (also brilliant in highlighting events in my calendar). Microsoft have helpfully provided web pages to show us how to use the follow-up tool in Microsoft Outlook and how to use colour categories in Microsoft Outlook. The follow-up tool then builds a to-do list and marks what needs to be looked at in order of the dates I have set for reminders. This then helps me see at a glance what I need to do first and I can work through things in order and add to it as new things come in.

I try to keep the to do list short or the sheer length of it makes my brain hurt. I remember from my web design days of reading about the psychology of web design. The idea was that the human brain rarely can process more than seven things at a time so a website with a menu of over seven items will be hard for the end user to browse through. I take the same design concepts into my lists. Its why I have to scan each item of the shopping list to find the item to check it off since I can't easily glance at the whole thing (where it is long) and see an item quickly. Its important that my to do lists don't grow to unmanageable lengths. So my list is a reminder to me to keep flagging my e-mails so I remember to go back to them and so things aren't lost. I ensure I keep my task list not too long or else it will make me overwhelmed and I will run away until I come back with fresh and less stressed eyes.

There's often talk about reasonable adjustments and the onus being on the employer to provide the support and workplace chances but I believe we need to also help ourselves if they aren't suggesting the right things. The one way is to maximise the benefits of the tools we might already have in our workplace.

As a former ICT lecturer and IT trainer, I think that not enough time is given to staff to learn how to use their computing tools. It is assumed that we somehow just figure it out on our own. We don't. If we don't know a function is there, we won't be magically looking for it unless we have that curious disposition. Many IT users are scared of doing something wrong. Its understandable.

I have trained people to organise their e-mails so they automatically go into different folders based on the contents and who its come from. At the end of the session I see real impact to these IT users because they are no longer faced with such an unmanageable wall of information but that it is sifted by topics and senders automatically into clearly labelled folders. It reduces the stress and helps aid productivity.

I know that creating e-mail sorting rules in Microsoft Outlook or flagging and categorising isn't the only solution to information overload but its a start, right?

Reference:

McCracken, DD. & Wolfe, RJ., (2003) User-centered Website Development: A Human-Computer Interaction Approach, Prentice Hall

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Coping with work-related mistakes

We all make mistakes at some point. Some people make mistakes with a shocking frequency but I think the majority of us take some pride in ourselves and want to do our best most or all of the time.

Sometimes I make mistakes although I hate it when I do. I tend to internalise it and put it down to my autism as the cause, as if I would be perfect if it wasn't for some unrelenting and cruel disability. It stares at me, holding me back, like it is jealous of me reaching my potential. I become incredibly fed-up and angry at what I perceive to be caused by some genetic injustice or design error. By no fault of my own I have got this malfunctioning brain that is making me mess up in a way that no one else would do, who would identify as neuro typical.

Cue lots of tears, frustration and shaking a fist in the direction of some vague deity concept. I get all theological and philosophical, wondering about why a (possibly Christian?!) God would make me from a design that had inherit mistakes in it. I ponder predestination and if I am "meant" to experience all this supposed autistic-derived suffering because human freewill is potentially a nonexistent construct?! God has already decided before I was born of my life's trajectory and I am merely a puppet controlled by its cruel puppet master, toying with its humankind.

I think of the unfairness of why I was born with such quirks. I can recognise autism had given me lots of benefits such as thinking in the way that I do and approaching tasks in novel and creative ways. I see that if utilised properly, it could be of great use in some workplaces and wider society. I get all that.
But I fail to ever see how sensory overload is a personality style but rather it is somewhat of a curse. It appears to me to be outside of a cognitive style. I might explore this later.

So there I am, getting ridiculously over the top and contemplating some deep topics all because I had made a mistake at work.

And actually when I calmed down and started to be a bit more rational and logical, I realised the instructions I was given were nonsensical or lacked the preciseness that I required. I had a wild stab in the dark guessing what was asked of me, and in good faith I completed the task to the best of my ability.

The trouble is, the instructions lead me up the wrong garden path (not literally!). After talking with some neuro typical people, I realised too that autistic people don't have some monopoly or rather unique experience to dealing with vague instructions. Yes, we do require a higher level of accuracy in instructions and find reading between the lines a challenge, but the neuro typical people of this world do not possess some weird unspoken-about mind reading skills.

So I started lowering my fist and the last tear fell. I began to realise that in this case I hadn't made a mistake but the person issuing the instructions wasn't clear. Perhaps the system itself of how work was communicated needed revision. It wasn't about mistakes or failures, it was more about a failure in communication to get across what job needed to be done. This is not even passing the blame onto the person setting the task but as a reminder to us all that clarity in writing is important. It helps organisational efficiency and cut down the unnecessary emails required to decipher the intended meaning.

And you know what? This happens to everyone, autistic or not. Mistakes can happen because one's autism can be a mitigating factor in creating different approaches to problems and understandings and sometimes not. However being on some autistic spectrum doesn't automatically mean that every setback and difficulty must be because of cognitive developmental disorder. I think I need step away from the automatic assigning all problems and life challenges to autism. I expect if I had spoken to a colleague about what I had been asked to do, they may not have been much clearer either.

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10 years on from my AS diagnosis - what's changed since?

Introduction

Back in February 2006, I finally received a report from my Dyspraxia assessment. It was arranged through my university and done privately. I completed a lot of paperwork with statements I had to rate as to how well they applied to me. I posted back the first ones and the assessor realised from my results that I might have Asperger's Syndrome so more assessment paperwork was due my way. This revelation meant nothing to me but I had always associated autism with extremely low functioning people who dribbled so I didn't think this could be right!?
I have never had much experience of those with significant mental and physical difficulties so I didn't have a clue how this would tally up with me. I remembered reading that some computer software companies had hired some supposed social misfits who could churn out amazingly brilliant computer programming code but they couldn't really look after themselves. They were autistic. The employers were essentially their carers. I knew I wasn't anything like that.
So I completed the second lot of assessments and then visited the lady in person.
We talked a lot and she was nice. It is an entirely irrelevant point but I remember the room to be sunny and bright. She pointed out that she couldn't diagnose me with ASD officially (and I have recently learnt only clinical people can do that) but it would perhaps be worth further investigation.
What I do remember is her saying teaching would be a poor career choice for someone like myself. I think she was concerned about the noise, the social dynamics and how I might organise my thoughts. And I guess she's right in part because it's not easy being a teacher, autistic or not, but I have always been determined not to let my problems hold me back. In an act of defiance some may argue I did my teacher training anyway a few years later!
I sat on all this information for a while, trying to get my head around it. Eventually I went to my GP, showed him my Dyspraxia report and without much persuasion, he referred me to the local hospital to see a clinical psychologist about the Asperger's Syndrome. I didn't have to wait long and I believe that to be fairly unusual as its not unheard of to wait up to two years. I think it might have been a few months, tops.

Summary of my Asperger's diagnostic report

November 2007 - Confirmed as Asperger’s Syndrome
Here's the summary of the points raised in my autism report highlighted in red.
Underneath I'll comment on how it applies now.
I have grouped it by themes to make it a bit easier to follow.

Work

• Always felt different and became aware of a problem when at work when discovering the importance of work being structured in a certain way. It became clear that instructions needed to be precise. I could be over-precise or pedantic.

Some job roles are better than others for those with autism. Teaching gave me the autonomy I craved after years of feeling mentally curtailed in previous roles which didn't utilise my full skills. Teaching is full of structure and rules - schemes of work, lesson plans and other stuff to do that are regularly repeated. I was Queen of my classroom. Something annoyed me? I can stop it (well, if I had the right classroom management skills!). I never ever felt overloaded in an autistic way as perhaps the pace of the lessons never dragged long enough to get irritating. But to feel safe and secure, I had to lesson plan way over the top. Ofsted would love me and my crazy planning and resource production but it was too mentally demanding. I felt I was living from one lesson to the next and working too late into the evening. I was starting to lose a sense of myself and this is why I opted for a much easier IT training role. Well, it was easier in some ways because when the work day ended, it ended but it was much harder too although much if it could have been avoided if my needs were properly understood. 

At least with teaching, there's far more scope to not know everything and to create an activity where the students explore to find answers for themselves. Training puts a greater focus on me knowing everything and doing a lot more talking. It was high pressured in ways teaching is not. Its just different!

I can certainly say that I still need task instructions to be clear and I do find that I struggle when things are vague and open to a lot of interpretation. I have had various line managers of differing quality and some have been incredibly supportive of when I have asked for clarification. Others have been less helpful, batting it back to me with, "You should know". In such trying situations, I ask a colleague for their spin on it or if that's not possible, I do the work in how I think and wait for the complaints that it is wrong. I am less timid of asking for clarification and I have been open with my current manager about this difficulty. It is better to do that than stick my head in the sand and hope the task goes away. I have learnt to speak up more and not be afraid.

• Frustration with work situation – misses out on interesting work because of lack of social skills.

As already stated above, I have improved in terms of my confidence. Teacher training was a huge milestone for me because I learnt how to speak up, stand in front of people and not worry about everyone looking at me. I got into my groove and I became very single-minded on what I was trying to achieve so that there was less time to worry about things. 

If I look back, I suspect that I missed out on 'better' work in some job roles because I struggle with promoting myself. I wonder now if this is less about the autism and more about my modesty and self-deprecating nature. I don't shout from the rooftops that I am brilliant and I know I need to sometimes make myself more attractive to employers so they can see my worth. At present, I feel like I am in a better place for this but I have to continue to impress my abilities so that I can be included future things. But it is that fine line between appropriate self-promotion and not becoming arrogant. 

• Poor experience declaring diagnosis – not been taken seriously.

People can be idiots. They do not necessarily understand autism without training or support - I certainly didn't until much later on in my life. I can't assume people will take it seriously if they look at me and wonder how I can be autistic off the back of my many achievements. Whether I like it or not, I have to educate others for my own good.

• Recurring depression but overcomes it.

It's hard being different and as much as I can wax lyrical about the positivity of autism, at times it is shit. The sensory overloads, looking in on a social interaction not knowing if I can join in and the ignorance I face. But I know too that some of my life challenges aren't only felt by autistic people and that I need to work towards a greater acceptance of myself. It takes time. Autistic people don't have a monopoly on social difficulties. 

• Glass half empty attitude.

 To be fair, how much time do we get to stop and smell the roses and appreciate everything around us? After many years of studying human rights abuse I do despair about mankind and I have got into the groove of negativity. Perhaps with a greater awareness of autism, I may be able to focus more on those who go beyond tokenism and generally make a difference in the world to further inclusion.

Social

• Difficulty with making friends and preferring smaller social circles. New people were hard to deal with.

I wonder about this. I am not sure if I do have so many problems making friends as so much as I just like my own company more. I know this applied to when I was at school but now? I don't seek people out unless I want to, not because I don't care about others or think about them but my thoughts often don't translate into action. I guess I probably need to make a better effort at keeping in touch so people don't think I am indifferent. I just find my own space easier. With a greater confidence about myself, I am less likely to have trouble dealing with new people. Over time I have realised we all have a social dance. There's set footwork to follow. Conversation is impersonal at first. It's focused on the environment in which we are in. Comments are about the weather, the rubbish beer, the excellent customer service and a brief description of our job and other sorts of superficial chat. I realise too that "what we do" is the key to beginning most social interactions. 

• Reporting bullying with a feeling of always being on the outside and getting things wrong such as fashion, behaviour and people taking advantage.

This reflected how I felt as a teenager and as a young adult. When I got to university I realised how diverse people are in so many ways. It made me realise that its okay doing my own thing and I didn't need to confirm to some set behaviour pattern and dress code because some nasty small-minded girl said so back in year 8 at school. I realised too that school was extremely insular and anyone striving out to do their own thing could be cut right down. I largely didn't recognise much of the social norms until I was 14 or so. At that point it suddenly became clear how far I was on the periphery. I never really wanted to give up my sense of myself and be assimilated into the collective of mindless drones (like the Borg if one knows Star Trek). I just wanted the space to be me and that to be accepted and respected.

As for being taken advantage of, I know I was at times. As my coping mechanism, I am extremely risk aware. It takes me a long time to trust people and let them in. Having said that, it's what keeps me safe. Everyone gets a chance with me but I don't have time for unpleasant people. If I can distance myself from that, I will. Unfortunately it is much harder when it's in the workplace and so I have spent the last few years equipping myself with the necessary knowledge to keep me safe. I am an equality representative for my trade union branch. It has empowered me in such a way that I know my rights and responsibilities and I will not tolerate anyone taking advantage of me or another colleague. I am not the person I was a decade ago who'd go home and cry but not fight back. The workplace bullying I faced long ago was did certain criminal actions and because I lacked sufficient knowledge, I allowed it to go unpunished. Having said that, I did at least recognise the power in the grievance policy and I hope that clipped the wings of the perpetrator. It at least would have led to a very unpleasant meeting and questions raised. Nowadays, I see knowledge as the first line of defence but I certainly have no litigious streak. 

• Often felt misunderstood. People were seen as superficial. I was nervous, anxious and making me feel both physically and emotionally upset.

I wonder sometimes if I don't give people enough opportunities to understand. The neuro typical isn't a mind reader. How can they know what upsets me unless they say? I have learnt to be more open about my autism, where necessary. I more recently realised the importance of being my own advocate. If I don't speak up that the air conditioning unit is causing me sensory overload by making a horrible noise and blowing air over my head, how can anyone else know? 

All that pent up tension will cause mental and physical difficulties such as migraines so I will be much more vocal about my condition when  I need to. I don't wear it like a label but I have to speak up or things can't change. 

As for people being superficial, I think the main issue is just not mixing with the right kinds of people. Regardless of autism, there are shallow people around and the trick I guess is to find decent caring people and they perhaps may be more accommodating of my needs. And of course, I try to be the same back as well.

• Difficulty in controlling loudness of voice and knowing when to stop talking

Voice volume has been a problem at times when I don't always appreciate the environment I am in and fail to modify my speech. It's much improved but I can sometimes talk too quietly.

When stopping talking, I run a mental check on the other person to check if they are getting disengaged from my talking. I am often aware that I struggle to appreciate that someone needs to leave the conversation. I tend to not keep people too long if I meet them in corridors, stairwells or they are saying their lunch. I set up exit strategies too so I can bail when I need to such as saying, "Hello, I am just on the way to.....". 

• Difficulty reading body language

I guess this is sometimes still a problem for me because I don't like looking at people in the first place so I am not looking in the right direction to actually see the body language! However, some things I pick up on easily enough such as people looking at their watches, shifting uneasily or backing away. It is the subtle facial expressions that I find hard but maybe that isn't helped by the fact that I don't have the same experiences of facial recognition that many neuro-typicals have?

Other

• Requires a routine and if it is disturbed, it can derail me. I like to work in my way in my time frame else it can cause frustration. Difficulty dealing with change, creating insecurity and confusion. I needed control or it would cause anxiety, particularly if things are done outside of my routine. Last minute changes and cancellations are hard to accommodate.

This probably still holds true but I am a bit better perhaps than I was but I still hate last minute negative changes. I like to have at least 24 hours notice for activities and I get extremely disappointed when things don't go to plan and it can make me very miserable. On the other hand, I try to be logical about things and focus on the reasons why things have to change. I try to be as flexible as I can but I don't like the build up of excitement when I look forward to something and then I crash back down. I find that hard to process. Still, I at least know that this can happen so I try and protect myself.

• Ability to remember long term things more than short term. I have a good memory for the irrelevant

I think this might be to do with overloading. If too much information is thrown at me, it doesn't sink in and so things don't go from short term memory and into long. I don't hear everything said to me and its like my brain shuts off. I hear the words but they might as well be said in Japanese as they are entirely meaningless. I switch off and I have had moments when I actually fall asleep in certain conditions! I find it hard to keep myself alert and writing notes helps to prevent the overloading difficulty.

• I can remember buildings but not faces and found it difficult to make eye contact.

I guess it boils down to where I point my eyes?!!?

• To avoid anxiety, I planned ahead particularly when going to new places.

This is something I still do. My phone is my crutch. Google is amazing to find out about stuff in advance plus Google Street Map is brilliant to find out what buildings look like before I go to somewhere new. I remember when I had to sit an exam in Coventry. I didn't know the place. I drove to a Premier Inn the day before using my Sat Nav. I looked up places to eat for the evening on my phone. I found some grub around the corner and was rather delighted by some Morrison's dessert :p The night before I looked up on the most brilliant website - Traveline - because I wasn't sure about driving in the city centre and finding a car park near the building I was attending at Coventry Uni. The website is excellent; I got the exact bus route and followed it on my phone whilst on the bus using Google Maps so I knew where I had to get off the bus and where I was on the map. It was brilliant because all my anxieties melted away. Incidentally, I got to the university 45 minutes early but that was at least peaceful for me. I was also 6 months pregnant so I had to take it easily.
Oh and by the way, Coventry has a HUGE Primark. I fitted in a bit of baby clothes shopping too before driving home. Vests. Newborns never can have enough vests.

Sensory Overload 

• Dislikes bright lights, wool, the sound of children, certain strong smells and unpredictable sounds.

I still don't like bright lights. Wool is annoying and itchy (I suspect this isn't just an autism thing!). Children are irritating but my own isn't so bad in small doses! At least I can tell the munchkin to shhhhh! I am not sure about the smells - maybe such as smelly feet. Unpredictable sounds remain a problem for me.
At the moment a problem I am having is the access door panel outside my office makes a high pitch noise but stops when someone uses their proximity card on the door and opens it. It closes and the noise returns. It hurts my head and makes me feel sick. Its on the to do list to get it fixed as I was so close the other day to just going home...! I also can't stand people talking loudly when I am trying to focus and read. I like silence when I am working unless I am writing about something I don't require too much focusing - such as this! It greatly depends on the type of noise, whether it is continuous and rhythmic.

• Difficulty distinguishing sounds and particularly voices in noisy environments.

Too much noises and I can't hear the voices I should be hearing. I can't cope with the radio and TV on at the same time and throw in someone talking, it makes my head spin. I don't juggle multiple sets of stimuli well and it overloads me and I find it gets physically painful. I end up with a migraine and want to go to bed in the dark away from any sounds.

• I have been accused of having a hearing problem but this isn’t true.

This is what happens when sensory overload occurs. My brain switches off and it seems like I am distant and not playing attention. I have been accused of not being interested but this true. Its more about not being able to take too much in sometimes.

• I reported a lack of sensitivity to physical pain

Its most odd. I react like a big cry baby when i stub my toe and my reaction is way over the top. Pain that I know is coming I don't seem to be so bothered about. I think the key is whether it is predictable and my reactions are much more proportionate when I know. I suspect that the minor accidents are more about how my little routine and plans are suddenly interrupted and not being able to transition back to them easily.

• Regular headaches

This is just the consequences of the the sensory overload.

Achievements

Listed in the report:

• Partner
• Job
• Own home.
• Notes my intelligence, significant insight into my condition and developed many coping mechanisms.

Yup and now married with a child and my job is much better than it was back and and I have done lots more uni studying!! :)

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Supermarkets, Motherhood and small kid tantrums

Once a week I go to a supermarket on my day off from work to do the 'big shop'.
Supermarkets are often places of nightmares for autistic people and when I am feeling low in myself, they can be my nightmare.

The lights can be bright. Too bright. I remember my mother saying she couldn't stand a particular supermarket because the lights flickered and triggered her migraines. She's not alone there. I don't like the brightness and the flashing of lights on some displays during some seasonal promotions.
However, I believe the local Abercrombie and Fitch store has gone completely the other way and one requires a bloody torch to find one's way around the shop, to be edgy or perhaps they just use extremely low watt bulbs to create even more profit. I've so got to take a torch there one day.... That's got its own unique challenges for autistic people and the visually impaired!
And don't get me started on them only hiring shop assistants who are pretty since they are 'models' not checkout assistants...

There can just be too much to look at too, making my head feel overwhelmed by the sheer range of choice with each product trying to get my attention through its packaging. I think though this can be offset a little by the way in which the supermarket is laid out so that shelves and people do not feel too close to each other. There are people all over the place with their trolleys too, trying not to ram each other. There's always the stupid one who makes me think that if that's how they push a trolley, I really hope they are not going out into that car park later and drive...
There is the social anxiety of having to get passed someone who's in the way and me wanting to look at a shelf and someone is blocking it whilst on their phone. There's the boxes in cages in front of the item I want because it's seen as a good dumping ground for it. I never quite know if I should move the cage or not.

I don't tend to have many problems with smell and I think perhaps the combination of my asthma and rhinitis limits the extent of it but I do not have a huge trigger in terms of that sense. I don't personally mind the smell of the on-site bakery and I have fond memories from 15 years ago of waiting at a bus stop next to a Tesco supermarket early in the morning breathing in the glorious smell of baked bread. However, there's the people who go crazy in the toiletries section and must sample every scent to make some hideous gas cloud. That will make me feel overloaded and disgusted, as I think most people would, autistic or not.

There's so many people all chattering away to their shopping buddies and to people on the phones. Other noises like the sound systems and public address announcements appear with no warning and can shock if its particularly loud. A particular shop in my home town has a poor quality sound system and pipes the local radio station through it. Alas, I can't easily shop under one of the ceiling speakers as the sound is so distorted and unpleasant that it does my head in. Way to go, M&Co!
Things can go wrong with trolleys and people bang them about into pillars and all sorts.
Children can be screaming and parents call out for their child to come back as they run off to the toy section.

That last one is all very familiar to me on a personal level and I know that it isn't always easy to have a child who has model behaviour out in public.
I have my young child with me who is now 4.

When she was a baby it was complicated as I wanted to get in and out as fast as possible, mostly because no new mother wants a child with a dirty nappy and half a trolley of food all at the same time. As any sensible parent can attest, one feeds their child and makes sure they have a clean bum before leaving the house. At least sudden changes of plan don't normally happen and anxiety doesn't have to occur about what to do about that smelly poo and the unpaid for tub of ice cream in the trolley.
Most of the time it was simple enough if I picked my timings well. The baby would sleep and I would have to fend off irritating people who wanted to ask annoying questions about my child. I generally coped okay because the conversations were very formulated and predictable but occasionally there was the odd person who thought my child was public property to maul over. Setting boundaries with the general public isn't easy for anyone.
Maybe I was lucky but I found myself doing okay. I was more focused on getting about the place and getting back before she woke up and I needed to get back home to express milk for her. I felt like I was mostly in control and holding myself together.

I won't go into this now as I think this merits a post in its own right but I expressed milk for my baby to when she was just over two and a half years old. I found that my tolerance levels to a lot of sensory overload was lower during this time than it normally was despite facing a lot more difficulties with a new child and all the things that a mother will face.
When I weaned, my tolerance levels dropped and the change of routine was difficult for me. There is some research out there about oxytocin and autism. The hormone is associated with creating feelings of love and bonding and it triggers the letdown reflex in mothers that pushes the milk out. I don't know much about it so it requires some looking into but I can say that my time with all that extra hormone in me made me cope well with things that would otherwise have caused me a lot of panic and meltdowns.

However, as my child got older and wanted to no longer be in the trolley, I found my ability to keep her under my control increasingly difficult and I was no longer having my daily top ups of oxytocin. Sometimes we would have peaceful trips but other times the little one would have a tantrum and a battle of wills broke out. If she doesn't get her own way (wants to look at something or have a toy), she might lay on the floor and scream. She can scream and refuse to move. It is a nightmare and I am acutely aware of my social anxiety with people judging me to be a poor parent. Then my tolerance levels for all the sounds and people can crash where I feel everything is coming towards me like all the sounds and people are suffocating me and I need to get out and away, Its like in that moment I become hypersensitive to everything and the world slows down. I feel a tad disconnected from the rest of the world but only for a fraction of a moment, Its extremely weird but it happens over seconds. I have to walk away from her to reconnect and reboot myself and this helps me get the focus I need to be a good parent. I never walk away where I give up my parental responsibilities or so that her safety is compromised but I now distance myself from her by a few metres. I am unsure if this is the best parental technique but it is the best for me. There is no good me having a meltdown whilst in charge of a preschooler having a tantrum. I need to be the strong one when she can't be.

Now, I am able to battle through my anxieties and sensory overload to get myself and my daughter into a place of safety, such as home where we can recover. I can get myself into a state of logic to deal with her rantings by talking to her and understanding why she is upset so most of the time its easier to prevent things from escalating than to firefight. I can do that fairly okay and I can pay for the shopping and drive us all safety to home. BUT, I am tired. I am in a poor way that evening and she's not going to get a complicated dinner that day!

I do acknowledge that a child who misbehaves in a shop is hard enough for any parent (whatever the reason) but when mixed with an autism in the parent, it can make for a stressful experience. All I can do is try and prevent things and take extra care as we head into the busy Christmas period where shops turn EXTRA crazy and not at all autistic friendly.

Interestingly. ASDA is running an hour a week in the Manchester area for an autistic shopping experience, Whilst it might not tick all the boxes for everyone, its great for those who will benefit from less noise! See the article here

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Blinded by the light: how I manage night driving

The nature of my job means that sometimes I drive to my place of work, other times I go by train to other more distant sites. I am happy with the arrangement and have no complaints. I have for many years been comfortable with my regular half hour motorway drive. I like it and I have no worries about that kind of high speed commute. The train I don't mind either, except the cost plus reliability (a rant for another day!)...

However, we are now entering into winter and it won't be long until its dark before I finish my working day. By this point I am tired and my tolerances to life drop a little. I am in no way near a meltdown place but night driving after a long day is something I have to be cautious about.

When I first got a car, I had terrible sensory overload at night. My eyes would catch the headlights of the oncoming traffic and I would seriously struggle to filter out the glare. Over the years I have been getting much more tolerant to this and recognising when best to make car journeys. A lot of it is about making sure my eyes are not drawn too much to those lights and to keep them darting around onto other more important things. It came with practice and confidence. I feel much safer too.

When I first started driving, I couldn't have music on. Now, I almost need it to keep my anxiety low. It's not that it's essential but feeling happy keeps the stresses down. The only times it goes off is when I'm doing complicated parking manoeuvres and driving in places I do not know, where I need to be at my peak of concentration and calm.

I hasten to add that I have never put myself, my passengers or other road users in any danger. I would never allow myself to get to that point. I have at times refused to drive and got my husband to when I have been with him. Or I would pull off the road and relax for 10 minutes so I could continue my journey. I would prepare in advance so that I never get into a car whilst feeling frazzled.

So here's my point: I seem neuro typical in that I can do all sorts of travelling in all sorts of conditions. I take it in my stride as a rule. But I do often have a long downtime after. I get home from work and turn the radio off my husband has left on. I sit down and do nothing. I just sit in the nothingness around me, enjoying the lack of stimulation to my visual and aural senses. I curl up on the sofa and veg. I allow the day to drain away from me and recharge so I am ready for when my young child comes home with her father.

So maybe I do have an hour or so between getting home and them getting back and perhaps jobs should be done and I should have eaten.

But I am having to look after myself so that I can face the evening.

This is why I take the train to the other office. Driving would just be too much. But I get there and my struggles fall under the radar because I have made my own reasonable adjustments to my life.

Sometimes we are our own greatest advocates of our needs!

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