I am 2 (kind of)

Sitting in my newly constructed Nerd Lair (Study in the shed) organising and archiving about 12 years worth of photos, I noticed something. Today is a sort of birthday for me. Two years ago today I got my confirmed diagnosis that I was Autistic so rather than catching up on the couple of posts that I was planning to start writing I thought I would reflect on those couple of years and how things have changed for me and in general.

I remember being really nervous in the lead up to this point, not because of what being diagnosed would mean for me, more what it would mean if I wasn’t. It’s one of those things that in many respects I already knew the answer. I’ve always looked at things differently and in a way most didn’t. It being confirmed was just that, the validation of something that in many ways I already knew. If I wasn’t I was in effect just a weirdo. I am still a weirdo , but there’s a reason for it. I am actually wired differently from most people and its enough. One of the things that still sticks wife me was being asked if i had looked for support from the NAS. I hadn’t and for me the reasons for this to me are pretty obvious, until I was diagnosed, I wasn’t officially autistic. So why would I burden them when it wasn’t certain.

I think the relief of having it confirmed was probably one of the main factors in the way I decided to approach it. I knew why I was like I am so it becomes easier to accept. I made a conscious decision to go with it. The thing that I found the most shocking and frustrating was now I had my diagnosis I could legitimately in my mind look for the support that was available. That’s the moment that the wind whistles and the tumbleweed blows across the shot. There wasn’t any for adults who were late diagnosed. So I started reading and discovered in the first instance Dr Temple Grandin. It was a this point that I really started to discover how different my thought processes were to those of normal people. Reading her describe her thought processes as a search engine set to image only was in not understatement an epiphany for me. It was the first time that I found someone else what actually thought in the same way as I did. I started to look at all those things that I took for granted, that to be honest other people thought was near wizardry as strengths and started to really play to those. I decided to run with it.

I also decided that as you will see in the news and especially on the likes of LinkedIn, companies really do like to rave about their cultures as Diverse and Inclusive. I decided to test this. I stopped masking and stood up put my head above the parapet and “came out” in a very obvious and public way at work, By writing a blog about it. I looked at this from the perspective that in a company as big as the one I work for with thousands of employees in the Uk and the World there could be no way that I was the only Autistic adult. So I decided to step up and say something. In the main the support and feedback I got was quite overwhelming and it was shared worldwide. I say mainly simply there will always be those who can’t or don’t want to try to understand, but that’s their problem not mine. I was asked to join the disability employee group and actually look to what could be improved. I do tend to look at some things rather cynically at times, but on this one it’s real, it’s genuine and it’s deep-rooted in the culture right up to the top of the company and I’m proud to be part of it.

The toughest thing has been losing my mum shortly after I was diagnosed which was a huge set back especially for my depression. I would like to think she would be proud of what I’ve achieved in the last couple of years and I hope she would be proud of me. Two years on I’m still waiting to grieve as I don’t think I have yet and it does leave me feeling a bit guilty, this is when being logical is hard as I rationalised it too easily. This made me realise how differently I process (or not) emotions.

I moved departments last year and changed jobs and the impact that has had has been seismic. I’m sat here typing on Sunday night and I’m looking forward to what I’m going to do tomorrow, I didn’t think that was possible a year ago.

I’ve become a vocal advocate of Neuro Diversity, and I’ve discovered that there are some for whom someone who is actually autistic talking about autism and not wishing they were someone else really does not fit their agenda. They really don’t like it especially when you surgically disect their weak arguments. There is a coven for want of a better word of parents who are self professesed experts on autism who are more interested in being martyrs and wanting sympathy for how hard their life is than making their kids lives better.

Rather than being the end of a journey being diagnosed has been the start of a new one. I think I’m better for it. I hope that on the way I done my bit for making life a bit better for those of us that aren’t normal. I’ve certainly become more forgiving of myself and I have stopped trying to fit in. I’m alot more comfortable with who I am, and that’s made alot of difference to my family and friends.

Be nice to each other

Dx

I’m going to finish on a quote from my marvelous late mum.

“Try to be good. If you can’t be good, be careful”

 

 

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Dropping off the radar

Wow, I’ve been meaning to write for sometime as so much has happened over summer. I just looked back and my last post was in June, way too long.

So whats been happening? Lots of good stuff.

The work front has continued to be a source of enjoyment for me. I’m now officially an expert Excel and Access user (I’ve got certificates and everything) I still metaphorically pinch myself on a Monday morning that I’m pretty much being paid to do something I’d do for fun. If someone had said this to me this time last year I would have laughed in their face.

My Story went live on the careers page

https://jobs.axa.co.uk/life-at-axa/axa-stories/dont-hide-who-you-are-engaging-and-understanding-autism

I’m really proud to be part of this because it’s not just a campaign it’s real, tangible and things are really moving forward. There will always be the dinosaurs in any place that don’t share the vision and mental agility to see this is a good thing and are only interested in personal silos and empires, but we know what happened to dinosaurs.

I’ve had my first couple of assignments as an employee reporter, the first was a written piece on why  got involved, the second was a big assignment that is going to need a separate post.

That’s enough about work, there have been bigger events over summer.

Earlier in summer I was approached by a researcher doing work into social perceptions and conformity in Autistic men. How could I say no? The entire purpose of why I started this was to articulate what being Autistic is like from an Autistics perspective and not an NT expert or Martyr Parent *sweeping generalisation alert* (Who on the whole like to tell actually autistic people what being autistic is like). This deserves it and it will get one.

Two weeks holiday, well two weeks not at work anyway, consisted of GCSE results day and my daughters twelth birthday. Matthew did well and We’re proud of him. We spent the afternoon at Mercedes world with him having a hour driving cars. On the way there we saw a Huf Haus, which was a source of great excitement for me.

Bekahs birthday proved one thing. Never underestimate the amount of noise that can be made by seven twelve year old girls.

The collection of buildings in my garden has grown, the summer house has now turned into a bar, another shed has appeared which has turned into a nerd lair.

I’m place holding again before I write more but. I still here for the few of you who are interested.

Be good, if you can’t be good, be careful.

 

Dx

 

 

 

 

 

Interviews, Articles and Assessments

It’s been another busy couple of weeks for me. I’ve finally seen the draft post for my interview on being an autistic employee. I have to admit it was not an unpleasant experience to go through, unless you were the person trying to take notes as my brain kicked into gear partway through the interview and I really started to roll. The blizzard of ideas blew through my head at hurricane force and what was supposed be a half hour interview turned into an hour and could easily have been more. But I got across what I wanted to. The only thing for me is that it is obviously not my writing as the tone is a lot more straight forward, that is the price that has to be paid for this. It’s a compromise my prepared to make simply because when I started this journey the first thing that hit me was the general lack of pretty much anything for autistic adults, be that support, awareness or inclusion. I wanted to do my bit to address some of that as it is just wrong. This article will hopefully do something for that as to simply be doing it shows that change is happening and things have started to move in the last couple of years. Unlike many articles this is not from a perspective of specialist recruitment program. It’s just about be able to be who you really are without fear and people who were able to see strengths and skills that fitted what they needed. As I’ve explained in previous blogs, I have been through a specialist autistic recruitment and for one reason or another (mainly my lack of code knowledge at the time and probably not being mentally ready at that point) I didn’t progress. I don’t think these sort of schemes are a bad thing by any stretch of the imagination. What they are though is a starting point. In my mind the true meaning of diversity and inclusion is a place where what you can offer is the overriding factor and not anything else, I see the ultimate goal of a recruitment process that is robust enough to just look at what people can offer regardless or race, religion, gender or disability.  We are a way off that yet though, the fact that there is a gender pay gap says the amount of work still needed. If people can be penalised for something as obvious as gender, how can they cope with something they can’t see and have no concept of. There a long way to go. It’s going out on autistic pride day on June 18th. I will share the link when it does.

I’m also now an employee reporter at work. This is all part of a drive to change communication in the company and make it a bit more real and honest. I have to say that it was not something that I was massively interested in at first, but I had quite a lot of encouragement to do it from those who like my writing style. One major caveat I take my own photos. There’s about 60 or so of us spread around the country. We have a forum and jobs get posted and we can accept them. I like the concept of this. We’ve had our first conference call, to pitch what we are about and how it all works. As usual it was not until several hours afterwards that it all got processed through my brain and the questions started coming out. A quick list of questions fired off by email, with the obligatory explanation that I’m not trying to be difficult, just understand how it all works. My main question was about how the launch of this was going to be contextualized, the response to this was for me to be given a series of questions to effectively interview myself for part of the opening article explaining the change. This is quite a change for me as ,(is probably quite obvious) I’m very much a free range writer and photographer. I decide my own brief and pretty much write about what I want from my perspective. It’s going to be a challenge to have to work to someone else’s brief. What will be fun will be the subjectivity of interpretation and how my eye and writing match with other perspectives.

In other news I’ve finally got my final NAS workplace assessment report. It’s quite an interesting read, very much a support document with recommendations for the employer to help get the best for them and me. On the whole it was an interesting experience. I did have to cover a fair amount of ground on my previous difficulties. This was something that I wasn’t really expecting to do, but mainly because I don’t have any where I am now. It was something that was quite difficult to go back over as I’ve pretty much processed it now and filed it away in my brain and didn’t really want to go back over it. That said is what it did do was make me appreciate how far I’ve come in a short period of time. I do have to say I’m rather proud of myself for how well I’ve adapted.

I’ve had a wonderful few weeks of having a general sort out in my favourite place, my garden. I been happily exhausting myself getting it all nicely tidy. Not overly so though. I view myself as a custodian of my garden, yes I own it, but I’m not it’s only resident. I hate gardens that are an exertion of human will over nature. I’ve never used a pesticide in my garden in the eight years we’ve lived here. For me it’s not just the plants and my fish in my pond that are part of it. I’ve got resident frogs and toads, slow worms, a resident grass snake, who lives under my waterfall, a yellow necked wood mouse who lives under the bridge over my stream and most recently moles in my bank copse. I’m probably more proud of encouraging this than I am that it looks nice. Although the one thing I really would like to take up residence is a hedgehog. This has come to a sharp and rather painful end as a concrete block fell on my big toe while I was breaking up an old fence panel and I have literally shattered it. So it’s purely light duties for the next few weeks while it heals. So I’ll have to leave pest control to my little gardening partner who keeps me company by tidying up the pests after I’ve been busy and giving me a song to hurry me up when he wants to get at any goodies I’ve exposed for him_DSF3418

Be nice to each other

DX

 

Why Just a week?

Last week was Mental heath awareness week. The diversity and inclusion task force I’m part of at work had a really busy week. Lots of good information and support was shared and as is becoming more common, people having the courage to share their personal stories and experience without fear.

One in particular struck me. Our executive sponsor shared his own personal experience of mental illness. It was a genuine story of how life, career and social pressures can really take a toll on us. The reason I felt it was a watershed was simply because it challenged a perception the those that are successful or have good jobs are somehow immune from all those things that can get on top of us and it can take us breaking to realise that it’s all got a bit skewed. It wasn’t the first blog for the week our CEO had already blogged about it, which is always a good thing. I know for a fact that this means a lot to him personally as we’ve met and talked about it. Simply because it’s THE boss it’s going to draw attention. To follow it up with a very personal story from another executive really set a tone for the week.

On the whole it was a really good week. compared to last year it’s improved further, there seem to be much more openness. One thing has really struck me. A LOT more people suffer from mental ill-health at one point or another than you would expect. Why is it still such a taboo subject? Yes, there can be exacerbating factors like stress and social pressures, which we can have a degree of control over. But it’s an illness, like any other part of your body your brain can go wrong too. Would you hold yourself somehow responsible for contracting a disease? Not really, there are factors that can impact on the risk that’s true, but ultimately whether you get something is not totally in you control. Why should mental health be any different?

In some respects being autistic made it a lot easier for me to talk about it. Simply because my lovely logical brain looks at it like this. Society says it’s fine to talk about it now, so I do. I’m a crap liar so just be honest. However there is honesty ,and HONESTY .As I found out when I wrote about how I was made to feel a few years back. Apparently I should have considered the feelings of those who made me feel that way and not wrote about it . I was just trying to articulate how I was made to feel. I still suffer from depression, I don’t suffer from autism, that is just something I am. I am also short, I don’t suffer from that either. Once you start to open up it becomes so much easier to talk about it. We really do need to talk about it. Most people (even me Mr antisocial) have someone we can talk to. Someone who can give you that little piece of perspective, or just allow you to empty your head of the things that build up in it. If you don’t there are organisations you can contact to do this, It does help. It took me months to admit there was a problem. It was the first time I’d ever experienced trying to say words and not actually being able to get them to leave my mouth. It took me 8 months to be able to do it without breaking down when I said it.

I’ve heard it said that depression is a selfish disease and I still struggle with that as I don’t think it’s a fair statement. If you are thinking rationally then yes it would be, but depression is by its nature irrational. So it’s not right to judge from a rational standpoint. What underlined this for me was that part of my treatment involved me becoming more self-ish, in that I had to learn to be compassionate to myself. I spent so much time trying to fit in to what was expected of me and trying to please other people I totally left myself out and then it basically went bang.

One week of the year where we focus on this is good, it’s better than none. It needs to be something that stays on everyone’s agenda. It’s not awareness programs and campaigns that do this, they are a catalyst. We as a society need to change. (the irony of me saying this is not lost on me) We need to talk to each other. If you see someone who does not look ok, just show some concern. Ask them if they are ok, whats the worst thing that can happen? They say no I’m fine or leave me alone? Speaking personally the isolation of your own head when you’re feeling that way is horrible. Someone noticing would have made a difference, just enough to dent that hermetic seal that depression builds around you.

Conversations about how we are really feeling need to become normal. It’s Ok not to be OK. It’s Ok to admit you aren’t. Once you do that, You can square up to the beast and fight it. Better still tame it before it gets too big. But if you do have to fight it you’ll also find you aren’t doing it on your own. Your cavalry is out there waiting, you just need to work out how to call them.

Be nice to each other.

D

 

 

 

Here comes the list!

Nosing around twitter the other day I found a tweet from @Neurorebel asking if  we wanted NT’s to understand one thing what would it be.

But actually there are loads of things on the list the NT’s need to think about so, Christa here it comes.

  1. You don’t grow out of it!
  2. Some of us don’t find out we are until we’re adults.
  3. YES we do have empathy, you just think we don’t
  4. We perceive the world quite differently to you
  5. NO! we are not all on the spectrum somewhere
  6. We are neurologically different to you
  7. Autism is not a mental illness
  8. Our opinions are no less valid than yours
  9. You have no idea what it is really like
  10. We want you to listen to us, not tell us what we need.
  11. We know more about autism than you ever will.
  12. Studying autism is no substitute for being autistic. Someone who studies tigers still has no idea what it’s like to be one.
  13. You can theorise, we actually know.
  14. ABA is basically waterboarding to ensure compliance with your rules.
  15. We need AutismSpeaks as much as much as america needs Donald Trump
  16. Inclusion means mutual acceptance not you telling us how to fit in.
  17. Diversity means accepting everyone even if you can’t see the difference
  18. Yes we do feel pain
  19. Just because we aren’t non vocal doesn’t mean you can ignore us.
  20. It has sweet FA to do with vaccines.
  21. The society you have created really sucks
  22. Do you realise how stupid you sound when you say I don’t look autistic, I am, So I do!
  23. We’re a lot more honest than you are.
  24. If we were the majority, you’d be the ones with the disability.
  25. No I don’t want a cure.
  26. Why can’t you see patterns?
  27. We don’t want to fit in
  28. You can be really patronizing
  29. We aren’t all savants
  30. There are things we are much better at than most people
  31. We aren’t all the same, just like you aren’t
  32. A lot of our mental health issues come from what you try to force us to be.
  33. Yes, we can have relationships
  34. Yes we can be very good at our jobs, when given the opportunity
  35. We can even have children
  36. All we really want is a level playing field
  37. We don’t try to be difficult
  38. We’d like to be accepted for who we are, not what you think we should be.

I think that will do for a starter. I have to admit it was quite a cathartic exercise and some of it is a little tongue in cheek. Ooo 39. We have a sense of humor.

Remember be nice to each other

D

 

 

 

What A Week (well actually a couple)!

Hello world or in reality the few of you who are bored enough or are insomniacs and use my inane ramblings as a sedative.

It’s been a rather busy couple of weeks, with lots of positive stuff and a little bit of negative, but, I’m not going there with that sorry, erm DILLIGAF mood hoovers. Feel free to try to visualise my contempt for you, I’m on a crest of a wave of massive positivity. There that’s that bit done..On to the reams of good stuff.

So where to start? New people is as good a place as any. I found my way back to Twatter (deliberate pun intended) and for once I actually found something useful. After commenting on BFI making a bit of a pigs ear of dealing with an autistic in a cinema in London. I got an invite to join a community called MyDisabilityMatters club.  It’s relatively new start-up. I haven’t explored too far yet as I’ve been so busy, but the welcome has been great and the encouragement to get involved has been really nice and very supportive (Yes, that’s you Libby) and it’s interesting to see the issues that we all share and some of the different local issues we all face. As I get more involved I will expand further. But my initial impression is of a close knit and welcoming community.

My last work blog for autism awareness week was really well received. So much so I have been asked to be interviewed by our group media partner for the company careers website. This is happening this week and I’m really looking forward to it. It really feels like progress is  happening. I do know that diversity and inclusion is taken really seriously and it’s a genuine value that runs deeply and goes all the way to the very top. To get personal comments on my blog and email from the chief financial officer is not just lip service. I have an enormous amount of respect for someone who would take time out to come and meet as many of us actively involved in D&I for lunch. Just to put faces to names and find out more about those people shows how much it means, and does make you feel proud of who you work for.

Next week is Mental health awareness week, and the theme is stress. I got a couple of blogs for work in the pipeline, one about stress and how it can be a symptom of something else underlying (like being autistic and not knowing it) , as well a being an exacerbating factor. Another about how we need to be able to identify the physiological symptoms of stress in ourselves as this can be an early signal and what we can do about it. My personal opinion is that more needs to be done to get men talking openly about it. I’ve been down the dark side of the “Be a real man and suffer in silence” approach to mental illness and it’s definitely not the way to go. I also know how crippling it is to have to summon up the courage to admit that there is a problem, to anyone, let alone someone close.

I’ve got even more in the pipeline as I’ve also been asked for input in reviewing policies to bring them up to date. I’m also still waiting for the report for my NAS workplace assessment and I’ll paraphrase some of the interesting bits that come out of that, when i get it as it was a bit of a peculiar experience for me.

On the home front an entire bank holiday weekend spent sorting out the garden was well spent and my sanctuary is starting to look nice again. My son starts his GCSE’s next week, which really leaves me wondering where the last 16 years went. My daughters parents evening went well, she’s doing well this is not really a surprise. So the occasional trauma over homework has been worth it. I’m proud of both of them and hopefully I make that clear to them.

So there you go . It’s all been a bit full on. I’ve still managed to find a little time to start throwing a few ideas on paper for some dystopian sci-fi I’ve been planning to write for ages and it’s starting to take shape. I’ve also started carrying my beloved Fuji X-T10 with me everywhere I go again after missing the chance to get some shots of parakeets in the local park (a rather unusual sight on the south coast of England)

Expect my ramblings to get a bit more frequent as I’ve found my love of pen (fountain naturally), paper and keyboard again.

Just remember life’s too short to not have fun poked at the stupid bits, but be nice to each other.

Take care

D

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How about a bit more compassion?

Something struck me this morning on the way to the office I popped into the local Sainsbury’s on the way and grabbed myself a coffee and a pain au chocolat. After paying, it dawned on me that we had breakfast being delivered to work today so to be honest I had just bought myself a coffee and breakfast that I didn’t really need. For some reason rather than being my normal gannet self and eating the lot anyway, I decided that it would be better to give it to the homeless man who sleeps outside the Sainbury’s opposite the train station. I don’t really know why I just thought on a bit of a chilly morning he might appreciate a decent coffee and something to eat. So I said good morning, I have to admit that I think I woke him up and he did look a little startled at first but he smiled and said thank you. Here’s the bit that really got me. Being autistic I know that I really am not the best person at reading facial expressions unless they are really obvious. The looks of disdain and shakes of the heads from the people at the bus stop opposite really got to me. Had I broken some unwritten rule? Not that I was aware of, if I had it’s obviously a crap one if it prevents you from showing a little kindness to someone in a worse situation than you. Now I generally won’t give money to the homeless as that can be used to fuel other issues that are not always helpful to their situation, but I do have no qualms in buying them something to eat or drink.

This got me thinking about what has happened to the society we live in. Last week a woman with Asperger’s was forcibly removed from a BFI cinema in London for literally laughing to loudly. Now BFI have pulled a faster U turn than a minister confronted with a policy they wrote, but denied any knowledge of until it’s shoved under their nose. That’s not the part that left me the most concerned. Policies can be changed and evolve, they got it wrong, apologised and I doubt it would happen again. The people who cheered and applauded her forced removal are the ones that get me, and those who sat and did nothing. What’s their excuse? Some people left in disgust at the action taken, that shows conviction and integrity. Traditional thinking says that its us autistics who don’t have any empathy and it’s the normal people who are the who are good in the social situations. So what’s gone wrong? I have to admit I totally disagree with the lack of empathy argument and thankfully research is actually starting to show that actually the reverse is true, neurotypicals are a lot less empathetic to anything that sits outside of their norms. So what this says is NT’s are empathetic to their own but not to anything/one outside of their boundaries. I realise that is a sweeping generalisation but then so is saying autistics can’t show empathy.

So this finally brings my slow meander onto compassion. Where’s it gone? When I was having my psychotherapy for my depression, Marta my therapist gave me quite a hard time about showing myself compassion and allowing myself to make mistakes and learn without tearing myself to pieces. This was probably one of the hardest things to do especially when you’ve spent most of your life not being able to fit in and getting things wrong or not being able to process things well. Being diagnosed really helped with that because it gave me a reason and allowed me to accept that I can’t be brilliant at everything (on some occasions capable of anything) no matter how hard I try. I still set myself high standards for how I do things, that’s one of my traits and one I wouldn’t be without. I have learnt to go a bit easier on myself and try to keep that to a context of things where I know I can achieve. This then leads onto showing compassion to others. We have no idea what other people have going on in their lives and in their heads. Are we all in such a rush to do something or get somewhere that we can’t stop for a minute and just think? It’s OK to not be OK and it’s OK to say you aren’t. Maybe if we dispensed with false pleasantries and actually asked people if they are OK genuinely without expecting to get a false I’m fine back, people might start having real conversations and people would start getting somewhere. I know this is easy for me to say as someone who doesn’t have the stifling social filters of normal people. That said I still learnt the behaviour of saying your OK when you aren’t, and it’s one I’m quite happy to say I’m unlearning, but the place it took me to, to start that process is one I plan to never visit again.

Next week is mental health awareness week. How about if you see someone who doesn’t look OK you ask them? It may still get the answer of I’m OK, but it may just let someone feel that they are not totally alone and someone has noticed. From personal experience that can be the start of someone looking for help, and you might just feel a bit better in yourself for having shown a bit of compassion for no other reason than you can.