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!! :)