Screw Unicorn, I’m a Dragon

Weird name for a post, but basically one of the many terms used to describe autistics like me. Who have pretty good jobs, can function (relatively well I think) in the ridiculous mess that is modern society. Why unicorns? Because apparently we don’t exist and the myth of us is bad for the more impaired autistics of the world. Or in other circles (normally when we’re challenging someone) we aren’t really autistic. Irrespective of the fact my diagnosis came via a professor and is not really up for debate by someone who read about autism online shared a friends post on Facebook.

I put these people, and it’s a pretty broad spectrum(pun intended) of those who would otherwise be regarded as quite rational; into the same boat as flat earthers and climate change deniers. And guess what? like the Autistic spectrum NO! EVERYONE IS NOT ON IT SOMEWHERE!! (any hardcore Terry Pratchett fan will understand the use of double !!)     They won’t engage in a logical debate on the issue, they simply aim to shut the argument down without presenting any real form of evidence based counter argument that holds up to close scrutiny . They form online echo chambers where the only view heard is the same as their own, and they stay in their clique until someone challenges their world view, or they read a view they don’t like, and attack it and or the person.

**sidetrack thought**, maybe I should devise an idiocracy spectrum that starts at flat earther (severely impaired)and heads toward the moderate (politician and tabloid journalist) and mild (estate agents), there could be a few quid in diagnostic quackery and treatment with varying sizes of hammer.

Anyway I don’t want to be a unicorn and it doesn’t fit me so I’ve decided (as is my right to identify) that if I’m a mythical creature I’m actually a Dragon (specifically, a blue one), I prefer dark caves, or wilderness, I hoard (books and knowledge in my case) and I’m quite amiable if approached correctly, or a vision of hell if not. There you go my case for the autistic dragon.

Meandering to a point eventually is the fact that, I find the real stupidity in infighting. Whether you agree with a neurodiverse paradigm or not, makes no difference. Let the psychologists and neurologists argue over ICD and DSM definitions and pathologies, that doesn’t make a difference day-to-day. It won’t get more autistics support, or jobs. That’s up to the rest of us, there needs to be more pragmatism, that does not mean we make more fit in to what society says, that’s just the majority dictating and they are not always right. History is littered with examples of this, shell-shock sufferers be shot as cowards is a good one. There needs to be better inclusion, and better quality advice out there. I sat in on a webinar where we were basically told that autistics make great baggage handlers. I was disgusted, it took hours me to calm down, it was the closest I’ve come to a full on meltdown at work. I wouldn’t have minded if it hadn’t been an organisation apparently promoting autistic inclusion. There was a positive out of it though, I thought that’s so crap I can do better! So I wrote my own which  I was asked to deliver to an online audience of about 50. Afterwards I found out they were all clinicians, but the feedback from them was great and really encouraging (and a couple contacted me to say they were diagnosed and really appreciated what I was doing) .

I’m lucky, I’ve done so much over the last couple of  years around diversity and inclusion. I work with people for who it’s not really a conscious effort to be inclusive, it’s just the people they are. That culture is infective given the chance to grow and thrive. There will always be those who won’t buy into it, but as the shifts occur they become the ones who become the minority and have to control their view. BUT, it’s a massive but though, they have the right to think that way, the right to free thought is inexorable and supersedes everything. Challenge, debate, discuss different ideas and perspectives. I work with someone who I’m really proud to call a friend we agree on an enormous amount but we have polar views on person first language. It works for her and I totally understand why, it doesn’t for me and she understands my reasons. We can have a perfectly rational debate about it, agree to disagree and move on

Most of the support is geared around children and rightly so. But there is so little for adults, there needs to be more obvious adult role models, coaches and mentors for them to look at. Not just the famous ones, but the ones that have simply managed to build a fulfilling life without needing to radically change who they are to fit in. I’m not going to call myself a role model (I’m not that narcissistic) but I do feel a responsibility to do what I can to help and support those who haven’t made it to the place I have yet (oh god am I showing empathy again?). Just because it’s the right thing to do, because it wasn’t there when I grew up, does not mean it shouldn’t be now.

I’ve never presented any of my views as anything other than my own, if you choose to agree or disagree that’s fine, so long as you don’t impose that on anyone else. If anything I’ve said has helped someone understand a bit better that’s great and what I set out to achieve. If you don’t or think you’ve wasted you time, oh well the name of this blog should have given you a warning, that ones on you for not reading the label properly.

Be nice to each other

D:)

 

 

 

 

 

 

 

Where does the time go?

Looking back a my last post way back in February around time to talk day and it’s now November again.

Today has been a tough one, there aren’t many times I would like to be “normal” but today is one of them. It’s the third anniversary of losing my mum to non hodgkin’s lymphoma. It may seem odd but today has crept up on me. Not that I’ve lost track of time, dates or forgotten anything, I haven’t far from it. The 5th of November, especially the 5th November 2016 is indelibly etched in my mind. I’ve just had so much to think about it just loitered in the periphery of mind and jumped out at me, unprepared for it again and everything that comes with it. It’s a tuesday so I’m not in the office today that’s good and bad. Good, because it gives me some space on my own to think about it and try and work it out. Bad, because as much as we’re a mick taking, facetious bunch on the surface, we are a team and do look out for each other.

So why would I like to be normal? Then I might be able process this a bit better or actually a bit worse. It’s one of the few times when I would like to be a little less rational and logical about it and certainly not have such a good memory. It’s all still crystal clear in my mind, the phone call that saturday morning, the drive to maidstone hospital with that gut feeling that it would be the last time I’d be doing it, and saying it to Kate as we drove past Teston bridge towards Barming. The final conversation with my family and the doctors and saying goodbye to mum. Her telling me “look after him for me” (my dad) and her not letting go until she was ready. Something I’ll always love her for, she did everything in her way how and when she wanted, from the beginning of my life in telling the doctors that she was not going to get rid of me like they had suggested,  right to the end.  The phone calls to the brothers (the three sons who weren’t blood but were always her boys and treated like it). Standing up in front of that group of family and friends with my sister doing Mums funeral in our way, exactly how she’d have wanted us too.

In many ways it feels like the blink of an eye and in others it’s an eternity. There’s a huge vacuum in our lives that nothing can fill, simply because no one can. I can’t describe her as a force of nature because that’s far too obvious a description and a total disservice and not what she was. She was a fundamental force, one of the ones that govern how the universe functions, not immediately evident but nothing else could work if it wasn’t there. She was quite simply the greatest Autistic advocate I’ve ever known and she didn’t even know it. She let me be me, never tried to make me fit to what anyone else wanted. encouraged me to read what I loved. Taught me to look at the evidence, think critically and make up my own mind and not be afraid to say it (Ok, that’s not always gone to plan). To have the conviction to do what I believe is right, to stand up and do it yourself as no one else will do it for you.

Dragging back to my original point of having so much to think about. It’s been a mad year, in a good way. Starting my data analyst apprenticeship and work being like being paid to do something that’s fun. Work on the extension to the house starting. Matthew stepping up to senior rugby while still a colt and proving for the umpteenth time that he doesn’t “need to be bigger” as any player who’s had the misfortune of trying to work out where he is going to go, let alone keep up or catch him. Her words would be simply “That’s MY boy”. This and a lot more have kept my focus and led to today jumping out again and I’m back in that place. I feel sad that goes without saying, especially for Bekah as it hits her like a ton of bricks every year as they were so close and it’s not getting easier for her as being a teenager brings more emotional complications, I’m really not that well equipped to deal with, as I still can’t get my own straight in my head.

So for today I decided to take some of the advice I give out as a mental health first aider and show myself a bit of compassion for once and put virtual pen to paper and empty it out onto a page, just to create more room in my head for other stuff to fit in. It works for me. The funny thing was the memory that came to me first thing this morning was not the sad bits. It was when we went to see Jurassic (which should be cretaceous) park (always the nerd). Mum gave me her first edition and simply said “Read this it’s about cloning dinosaurs it’s brilliant” years before the film ,and she was right it’s brilliant. We went to see it with high hopes it would be done justice. As we walked into the foyer of the old Tunbridge Wells cinema (now gone) at the end of the film, we looked at each other and said “Well that was a load of shit” and laughed as everyone else around us crowed about how amazing it was. Although we did agree Jeff Goldblum had Ian Malcolm nailed down to a tee. It was the only film we ever went to see as just the two of us. We then vowed to never to see a film at the cinema we had read the book of.

I’m still waiting to grieve, or maybe I am, and should have a cup of tea and stop worrying about it until it happens. If you can’t control it you just have to get on with it, as someone much wiser than me once told me and she was usually right.

 

It’s time to talk (amongst other things)

It’s been while since I’ve put virtual pen to paper so being Time to Talk day there’s no better time. I’ve been working on a bit of a retrospective of my last year which is still a work in progress.

I hosted a lunchtime meeting on the subject to Time to talk and mental health. It was a really good session trying to cover as much ground as possible in an hour for me is nigh on impossible so. I kept it to a couple of key points and tried to open out the discussion. There were only 7 of us including me which I have to admit was a nice number, big enough to have a variety of perspectives and small enough to be personal. I wanted to stay away from the dreaded powerpoint slide and kept it to 2 flip chart pages.

While thinking about what I wanted to cover it made me reflect on how this all started. This time 3 years ago I was in the middle of psychotherapy, being treated for PTSD for childhood trauma and I was just starting the initial screening that ultimately lead to me being diagnosed autistic. Wind back 3 and half years and I was sat my desk, masking despair and trying to calculate the best time to go to the office toilets that we give the longest time frame for me to be found. That’s uncomfortable reading for some and others something that you just don’t talk about. The point is the fact we don’t talk about it is the problem.

How many times do you ask someone “How are you?” and invariably we get back “I’m fine” Is that just a routine pleasantry that we are expected to do? or do we actually mean it? What if the response was actually “I’m not okay”. Cue an awkward moment, a response we weren’t expecting. But what is the actual worse thing that can happen in that event? The solution to that is pretty straight forward you’ve pretty much got one of two reply’s 1.What’s up? 2.Do you want to talk? It’s perfectly possible you will get a response of no or I don’t really want to talk about it. In some respects the response you get doesn’t really matter. What actually matters is that you noticed and you asked. Looking back personally had someone actually noticed enough to ask and mean it ,it may well have come out earlier. I’m not blaming anyone else for that. We’re conditioned as a society to “Just get on with it” or “Keep calm and carry on” and so we mask it, we say we are fine when we aren’t and we make false pleasantries when we don’t actually care. I know a fair bit about masking and trying to fit in. It’s something that intentionally or otherwise I’ve spent most of my life doing (somewhat unsuccessfully I should add). I don’t anymore, simply because the effort and energy it requires is in itself exhausting, and this is a downward spiral. When you aren’t feeling great the last thing you need to be doing is spending the energy you have on keeping up the pretense of being fine. Yes it can be awkward for other people, unless they get exposed to different paradigms they aren’t going to learn or get used to it. That’s what needs to happen.

We’re stuck with a cultural mindset that was perfect for its point in history, but that was three-quarters of a century ago and we don’t have the threat of air raids or invasion anymore. We don’t need to simply exist to survive from day-to-day. We’re a bit further forward than that allegedly.  So why can’t we show a bit more empathy, the thing lots of “experts” like to say autistics like me don’t have and can’t experience. Yes, it is challenging, processing emotions is really hard work for me. That doesn’t mean they aren’t there and in some instances the reason it’s so hard is actually the fact they’re felt so strongly. That’s why I talk and write about mental health and being autistic. The thought of someone else being in the place I was and thinking there was no one to turn to is something I find abhorrent, especially if I’m in a position to simply to make them aware that they aren’t on their own.

That leads me rather neatly to where I started, with me in a room talking about mental health with six other people. My two points 1. Mental health is a thing like physical health it can be good and it can be bad, we need to be able to identify in ourselves when we’re staying or moving to far towards the poor end of the continuum. 2. The best thing to improve mental health is ourselves as a collective. We have a responsibilty simply as human beings to look out for each other.

In the same way we would like people to look out for us when we need it, we need to look out for others. Yes we can have campaigns, awareness days, weeks and months, mental health first aiders like me and the entire plethora of professional support. We need to start being more honest to ourselves and others. Next time you ask a “How are you?” mean it, and when you are asked how you are, be honest. It’s not actually that hard once you do it a few times and worst thing you may need to do is listen for a bit. You don’t have to solve anything, but you may just make a huge difference to someone when they need it. It may not, but even then you can look at yourself and say you tried.

 

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”

 

 

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

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.