A2's guide to a low stress christmas for ASD families

I love Christmas. Always have. Even through my awkward teenage years when visitors were welcome but I would sit silently in a room with them.

As I have got older, it has become even more exciting for me, and with the addition of 2 kiddies to the household, I don't think it could be bigger.

Which also means its stressful!

Having a diagnosis myself as well as 2 kids on the spectrum means that to have the opportunity to enjoy christmas, we need to follow a few rules, and I think that these might be pretty useful to other people in a similar situation.

So, here goes.

1 - PLAN! Spontaneity is nice in its place, but at Christmas, ASD children will be getting wound up in a way its hard to calm them down from. The entire world is throwing Christmas excitement at them. So, have a calendar, or a wall-planner, or a visual timetable they can see, and talk them through what is happening each day so they know what to expect.  At the moment mine says

Dec 18 - School all day
Dec 19 - School half day then playing at home
Dec 20 - Take Daddy to hospital/ playing at home
Dec 21 - Daddy's Birthday
Dec 22 - Playing at home
Dec 23 - Granny and Pappi coming
Dec 24 - Christmas Eve, Uncle AJ coming to stay
Dec 25 - Christmas Day: Uncle AJ, Granny and Pappi visiting

etc..We also always make sure we have a laminated sheet like a social story which has details of what is going on at each point through the day. this gives them much-needed structure and routine.

2 – Minimise unexpected visitors. I know this one seems a little odd. How can you minimise the unexpected?  Well, consider who the most likely people are to come visiting, and get in contact with them pre-emptively. Suggest a day/ time they might like to come round, and agree a date time with them, and stress to them no unannounced visits! I always try to organise a single day, maybe two, over the holidays to have all of our visitors as I find that one day with multiple visitors is easier for our girls (and us!) to handle than a few visitors over multiple days.  This year, we have invited people round for a Boxing Day leftover party, so by the end of the day on the 26^th, we will have seen all family who are likely to want to come round.

3 – Have enough for everyone! Its bad enough when NT kids fight over things. Just imagine what its like for ASD kids with their very egocentric world-view and inability to grasp the world view of others. Wherever possible, try to make sure that there is at least 1 of everything available to avoid the inevitable screaming meltdowns when “sharing” is suggested.

4 – keep sensory stimulation to a minimum. Flashing lights, crackers, balloons, music, cooking smells, alcohol: Christmas can be overwhelming for the most well-balanced person. To someone with sensory issues, which come hand in hand with ASD, it really can be too much.  Try to tone this down where you can: static Christmas lights rather than flashing, or ones with a slow pulse, no decorations which play tunes or move.  My girls really don’t like loud noises, so crackers are a no-go (or at best, they have to wear their ear defenders when they pull them) and the fear of balloons popping causes hysteria, so they are right out. Involving the kids with some aspect of helping with the cooking can mitigate the dislike of the odours. Alcohol, I’d recommend holding until the evening when they are not around so that the very strong smell of alcohol (and over-the-top antics of the well-fuelled) don’t upset them.

5 – on Christmas day, give them the opportunity to be excited and open presents, but don’t give them everything at once – it can lead to sensory overload. Try to ensure they only open 1 or 2 gifts at a time and then enjoy those items before moving on to something else. But remember its still important to keep up the...

6 – ROUTINE! As much as possible, get dressed at the same time, eat breakfast at the same time, if you are toilet training, have your potty breaks at the same time.  Nothing makes ASD children more anxious than unpredictability.

7 – Distractions. A good rule of thumb is always have something to hand to distract them with should it look like they are finding it too much

Christmas should be exciting and fun, but there’s no reason it has to be too much for ASD children (and dads like me!) to enjoy with everyone else with a little bit of planning and forethought.

For anyone else reading this who is part of an extended ASD family, please take note of how much work we have to put into keeping calm on Christmas. This is why we don't come to your house, its why we ask you don't arrive unexpectedly, its why, no matter how well-meaning your offer of help is, we've got this covered.  If you really want to help, come when you say you will, bring what you say you will, leave when you say you will and support our decisions and routine.  This will help us keep meltdowns at bad, and ensure that we all have the best Christmas we can.

An open letter to Autismspeaks

Dear Autismspeaks

I write this as a man diagnosed with Asperger’s Syndrome who is a high functioning business professional, as well as a dad of two girls, one of whom has been diagnosed with Autism, the other of whom is recognised as having sensory processing disorder and autistic traits, diagnosis pending.

As I am sure you know, there is a growing movement amongst the ASD and ASD supporters community to encourage organisations to distance themselves from you, and a growing number of other Autism and other Disability charities and organisations are also speaking out against you.  I am wondering if you know the reasons why?  If you are not sure, there is a page at http://boycottautismspeaks.com/why-boycott-1.html which spells it out in great detail, but this is the official reason, if you like. Every individual will have their own specific reason.

For me, there are two things that Autismspeaks could easily change that would make me more likely to be sympathetic to your cause. I could easily say that it is your apparent drive to find a “cure” for autism, which is upsetting.  Let me be clear: I do not need to be cured, any more than gays do. My daughters do not need to be cured.  As a parent I need to find a way to adapt my life to them, not the other way around. This would be true whether they had ASD, Huntingdon’s, MS, Cystic Fibrosis, were paraplegic or any other condition, or simply if they were ultra-demanding, high maintenance people with no medical issues. Children are always hard.  This is offensive, but its not my main complaint.

Nor is your history, such as supporting the fallacy that autism was caused by vaccinations. Who knows how many illnesses or deaths in children were caused by that little gem, which history has demonstrated to be a lie concocted by a man determined to sell his own vaccination, and so spread slander about the existing MMR.  This was an awful mistake that your organisation made, but people make mistakes.

Even your support of institutions which use “therapies” that would have people trialled for war crimes is not my primary concern. Awful, but not my personal bugbear. Nor is your poor record on using your donations directly for the ASD community. We’ve all seen the numbers and they are pretty shameful.

No, my issues are simple.

Autismspeaks uses negative imagery in its portrayal of autism to get its donations (http://vimeo.com/20692567), rather than showing the positive. Yes, people with autism can be very challenging until you understand the condition, but to compare the condition to having a fatal disease, and portraying it as a tragic burden is just repulsive.  Compounding this is the claim of an Autismspeaks executive that they considered driving off a bridge when they found out their child had autism.  I wonder whether this would have been the same if they found out their child was gay.  Its just a different way of operating.  how hard do you think your imagery is for people who have autism. It is demoralising, disrespectful and hugely damaging to their self-respect.

This approach convinces me that under current policy your name should be FearofAutismspeaks.  It is a terrible message to send to people who may never have come into contact with autism before when their child is diagnosed.  It’s a horrific thing to be floating in the atmosphere of society: autism is a life sentence! No its not. Its just a word. Not a sentence.

The second issue is this: where are the people with autism in your company? Where is the personal experience not just of living with someone with it, but of living with it? Living it? I’m sure you are very well aware of the phrase “Nothing about us without us!”. It’s very much the central tenet of positive disability movements.  Autismspeaks doesn’t seem to have much personal experience of Autism, and as such, its difficult for any of us who are part of the actual community to accept you know what you are talking about.  Exceptionally so.  And what makes matters worse is when now, at this moment, Autismspeaks is under pressure to give answers to the ASD community, it seems to be pretending it is not happening.  In summation – Autismspeaks does not listen.

I am a sensible and rational man, and I would love to be convinced that you are working for the good of the ASD community, so I invite you to do it. Show me I am wrong. Show me you listen. Show me you are not simply peddling fear for dollars. Show me your ASD leadership who are helping guide policy with their experience of autism.

For the next seven days, I will not promote the boycottautismspeaks campaign, in hope that you can give me an answer and I can say “I was wrong,” and “I am convinced”. But if you continue with what appears to be a stonewall policy on criticism by the ASD community, then I will assume that your lack of answers are simply due to the fact you can’t argue with the truth.

Yours respectfully

The anonymous aspie

Weathering the storm of unexpected change.

 I am furious!

Today, I was due to have surgery on my hand, a surgery which I had been preparing for since mid September, and been working through the details of since mid November.  Today, I got up at 5 a.m., as did wife and kids (well, actually, sometime between 5 and 6) to be at the hospital for 7. I had prepared myself mentally: go in early, get seen early, see consultant, see anaesthetist, go to theatre, general anaesthetic, surgery, wake up, go home. And to start with, it went according to plan.

Until the anaesthetist turned up, and decided he would rather do a local anaesthetic than a general, and spent time trying to pressure me into that. After 10 minutes of cajoling, I told him I had spent weeks preparing for general and I don't handle last minute changes of plan well. He could see I was getting upset, and agreed to do a general if that was feasible.

That shook me up some, and I started reading my book to try to calm down.  Just after 9, wife arrived, almost simultaneously with the returning anaesthetist, who tried to tell me as politely as possible that he was sorry but my surgery couldn't go ahead today, but the good news was that they had already booked another appointment for me in a different hospital.

So, to anyone reading this who knows about Asperger's  and has been following my blog, how well do you think I took that?  change of date, change of venue, sudden call off after an attempted change of plan on the day?

Safe to say the simplest description would be "not well".

I sat in silent shock, I cried, I stormed off, I came back and shouted, I stomped out of the building before coming back to try to find out when they had booked me for, and it turns out that they think the best time to operate is the day before my birthday (a day which has always been disastrous to me).

I was so angry! There's no way they can understand the amount of mental preparation I have put into this, not to mention discussions and agreements I have had at work - a job I only started the week before I found out I needed surgery - to ensure that they understood the need for this, and let me have the time off that I required.

And if the fact the surgery was cancelled wasn't bad enough, the reason for it was, put simply, that I'm too fat.

Seriously. I'm too fat to have surgery on my wrist and thumb.  Funny how that didn't come up in the hand clinic originally, or in the phone consultation when I gave them my details including my weight and height. No, I'm too fat today for the facilities at this particular hospital, and I'll need to have surgery at a different one.

So, to recap: the surgery was cancelled, on the day, at the last minute, when I was already in my surgical gown, wearing tags and with lines drawn all over my arm to indicate where incisions would be made.  The anaesthetist said I was too fat to have surgery and rebooked me to another hospital, closer to Christmas which has, by the way, already interfered with my Christmas plans.

Like I say - furious! It has taken me a good 3 hours to calm down to the point where I don't want to scream about this! This is exactly why we need services like ASQ to be able to collectively list experiences like this so service providers have something they can refer to and see examples of good/poor service and how it affects the ASD community.

So, now I have to prepare myself for surgery again, in 11 days, in a different hospital, at a different time, as well as come to terms with my weight - and let's face it, being told you are too fat for surgery, apparently because I would likely breather equipment, is something of a wake-up call!

Of course I can do it, but the level of stress this has given me today is just unreal. So much, in fact, o have decided to still have the day off work as I don't think I would have achieved anything in this frame of mind.

God bless the NHS.

December, and all that comes with it

November is over, and all the excitement of Christmas is coming.

I didn't blog once during November as I focused all my writing energies on NaNoWriMo, and seeing if I was up to the amount of daily writing that it would take for me to become a writer full time. Well, quantity I can do. Quality, not so much, but its all about practice. I enjoyed doing it, and hopefully I can keep motivating myself. 

An odd side effect is that now I no longer know what to do with my free time if I am not writing!

Anyway, December in all its glory is now here, and I am both looking forward to and dreading Christmas in pretty much equal measure.  Its only a week until I have my hand surgery, and while I know that its not a big deal - its only hand-surgery after all, not heart surgery - I am pretty anxious about it, and can't keep my mind off it.  6 weeks in a cast also does not sound like fun over the holiday period.

Still, I get 2 weeks paid off work over Christmas, so that's good.

But things I am most concerned about are thusly:

• ASD Daughters getting more and more hyped up, with no space or time to calm down. Meltdown City, if last year is anything to go by
• parents coming to visit for Christmas for first time. this will add to point above, and put wife in same category. She likes my parents, but this is pressure!
• Operation going badly, leaving me less able over the period.

now I love Christmas, and everything that goes with it (other than drunk drivers and office parties) and normally I don't stress about anything like this. I just relax and enjoy it, letting the good old Christmas spirit take over, but in recent weeks, wife has declare her theory that ASD people love Christmas because they are programmed to from childhood, with everything reinforcing how wonderful Christmas should be, and we are effectively forced to love it, meaning that a bad Christmas to NTs is an absolute disaster to NNTs, and that maybe if we thought for ourselves, we would see that Christmas wasn't that great.

And I was gutted! She didn't use those exact words, but I followed through on her train of thought, and it made me sad and a little angry that she was telling me that I only like Christmas because people have told me to, and because my brain is abnormal.  It really hurt, but I couldn't tell or show her that because I felt it would only reinforce my abnormality.

It hurt, and it made me sad, and it only reinforces the feeling I have that wife and I are drifting apart, but that's a blog for another day.

Right now I have presents to wrap, cards to write and a family Christmas to prepare for.

Family frustrations

Days like today, I really hate.

Wife has been up early, since before 6, with DD2. And as a result she is already feeling tired. Which is fine and understandable. 

But she is also doing a lot of huffing and harrumphing and so far today between then and now, when she is going for a shower, she has not got off the couch, leaving me to do all of the dressing of the kids, the breakfasts, the chasing around after them etc.

All of which would still be fine if it didn’t feel like she was also being grumpy and disapproving at me, like I’m doing something wrong. I really don’t think I am. I’ve been doing household chores and playing with the kids and I just feel like I am being constantly disapproved of.

Maybe its just paranoia, but it doesn’t change the fact that this is how it feels.

To be honest, all I want right now is a little peace and quiet in my room, just a few minutes reading to try to change my mind’s focus, but now she’s in the shower I can’t do that, so instead I am trying to get everything down in this blog post whilst trying to fulfil kiddy requests for snack, juice and cuddles.

I know wife is very tired at the moment ad she has taken on a college course and I don’t think she realised how much work teacher training was going to be. She has spread herself too thin, and at the moment it feels like I am the one losing out, and I am being seen as a distraction and a source of tension.

Edit: and in a strangely ironic twist, it turns out her issues are not about me at all. She was humiliated in class by a lecturer yesterday and is obsessing about that.

This, combined with the worry over my upcoming surgery on my “good” hand means that I am currently not in the best frame of mind, and I’m feeling a little abandoned and taken for granted.

I find it hard to speak to her about these things however as we don’t seem to be able to have discussions like this without the becoming fights about something else.  I am very poor at keeping rational when talking about my emotions, and I know she feels very frustrated about living in a house where 3 people have asd and her needs always come last.

Its frustrating, miserable and depressing, and I really don’t have a clue how to go about addressing it positively, so I have no doubt when she comes out of the shower I won’t talk about it, and will try to simply put up with her silent disapproval father than end up speaking out and “causing” a fight.

The scourge that is Helpful People

Whether its part of my nature, a product of my environment or just something to do with being aspie, I have trouble asking for help.

Mainly, I just don’t feel I need it. Whatever I am attempting to undertake, I am perfectly competent to achieve, or I wouldn’t have started it in the first place. Simple, pragmatic fact.

Except its not a fact.  In what I know is a very aspie way, my view of the world is very black and white. I have trained myself over many years to perceive the almost invisible shades of grey that NTs see in everything.  And I can now, when I try, perceive those shades of grey in most things, but almost never in myself or my own abilities.

After a very long day, I was having trouble using the computer at home; simply selecting the option on a drop-down menu in Word was proving a hell of a challenge but, because I know that I am competent at using Word, when wife started making suggestions and, worse, pointing at the screen and showing me where to click, I verbally lashed out at her. I finished what I was doing and went to the kitchen to put the kettle on to make tea – my classic move of “I’m leaving the room, leave me alone” – and have a bit of quiet time to calm down.

Which would have been great if wife hadn’t then came in and said that when she tried to help it would be nice to have some gratitude.

Cue fight.

Now I’m sure any aspies reading this will understand the problem. Its not about someone helping, its about someone effectively questioning your competency, and trying to “help” where help is not necessary – even when it is!

The fight was brief, and I did explain to wife my frustrations at my own performance and the perceived criticism, but that I did appreciate that she meant well, and so its all sorted out.

Until next time, when virtually the same thing will happen again and we’ll end up having the same fight.

So, I need a solution; how do I convince myself that someone’s offer of help is not about criticism of me or my ability but a genuine offer of assistance with no agenda, particularly when I am rattlin’ (a good colloquialism for on the edge)

For now, I am simply going to watch for these instances and make a note of how often they happen and what my response is, how often it becomes a fight.

I suppose sometimes letting someone must be better as it will keep the peace, and there are days where its better to keep the peace than make a point, right?

 

Opening up: Asperger's & the new job

Its Day 4 of the new job, and while I am still waiting for that diagnosis (see previous blog) I have already made sure that both my line manager and the person I will be working most closely with, one of the office deputies, are aware of my situation.

On day 2 they decided to have a 10 minute chat with me about how it affected me, whether there was anything they could do to help and how it would manifest if there were issues.

I was really happy that it felt like someone was taking an interest without taking a negatively slanted view. Indeed, my line manager said that after she thought about what it meant, we could do with a few more with a touch of Asperger's in this line of work. It felt good :)

So, onto the job itself.  Mainly I am chaecking the structure of a data system and adding information to it under a strict set of guidelines with some complex user-tools.

Which means it suits me down to the ground.

I decided it would be nice to create a quick list of Pros and Cons comparing this job to the last one, and the results were as follows

Cons

• It pays less

Pros

• I don't have to deal with the horrific bitch who ran the last place
• My commute from door to desk is 8 minutes
• I am working in the same location that my wife is undertaking her teacher training and work placement
• My level of responsibility is significantly lower
• I am not responsible for other people
• It is less stressful
• Communication is much more open and honest, so there is very little politicking going on
• There doesn't appear to be any "us" and "them" within the department
• I can park 2 minutes walk from my desk
• There are gym facilities on site that I can use
• There is a library where staff can hire out DVD's. for free :)
• The atmosphere is much more laid back
• I get 4 days more holiday than I got at the old place, and thats at the starting allowance!
• There don't appear to be any periods that I can't book holiday during

OK, I'm only 4 days in and it already looks pretty good!

The other thing that is making me happy today is this: I have discovered that my former workplace have made my position redundant. Why does this make me happy? Because it reinforces my claim that they were trying to force me out, and it would mean that a case for constructive dismissal is more likely to succeed.  Added to that is the fact that they had a round of voluntary redundances a few months ago. I inquired informally about VR and was told that my position was too important to be made redundant, and so i was not eligible.

So, my former boss lied to me, denying me a redundancy payout, then bullied me out of the job and made my role redundant. 

I think i might just be talking to my union rep and possibly my solicitor very shortly.

Finding the balance: Social interaction vs: social isolation

this is approximately how I socialise

I like being in my own company.

I don't get lonely on my own very often.  I don't feel the need to be with other people. I don't enjoy being with most people and, frankly, if I can avoid a social engagement without offending people, I normally will.


I do understand, however, that this is not universal, and a lot of people would say this is not normal.

At the moment, Wife is trying to encourage me into more social activities. With all the changes that have happened to us in the last 12 months, she has decided to be more pro-active about her own social life rather than relying on me for one, and so now she has joined 2 different folk music groups, and her weekends are normally taken up with practice, ceilidhs, gigs and gatherings.  And she loves it. It makes her very happy.

So, understandably, she is trying to encourage me to find something that I am passionate about and locate a group to join. This isn't a new drive on her part, but it is more sustained than it has been previously.  I completely understand her perspective: that finding something you love to do is a blessing, that its fun, that it will help me develop friends and relationships, that she won't feel the pressure of being my entire social circle.

But here's the thing: while I'm not against the idea of having a social life per se, the more she tries to talk/ force me into doing it, the less likely I am to do it.

There is also the fact that the people with whom I am most likely to spend time are people not too dissimilar from me. Gamers, geeks, nerds and social outcasts, and if I'm perfectly honest, most people like that make me cringe, and while I might be happy to game with them, i really don't want to spend social time with someone likely to incorporate RP conversations into real life activities. I just can't deal with that.

What wife doesn't understand is that the biggest issue for me now is one of confidence.  Before I realised the extent of my difference from other people I was bulletproof in social situations: full of confidence uncaring about what other people thought of me and happy to do my own thing. It didn't occur to me that there could be anything wrong or inappropriate about what I said, what I did and how I approached people.   Now, however, things are different.  I am now very aware of my shortcomings in comparison to "normal" people, and i can't stop worrying about whether I am offending people, upsetting people or acting inappropriately.

Which means I am boring. I do nothing. I don't engage in conversation of my own accord, but wait for people to talk to me - which given that I am the silent stranger in the corner happens rarely.

I feel its a conundrum.  I don't want to socialise for the sake of it, but I can see that Wife thinks it will help both of us.  I don't mind doing it, but don't want to be forced into it. I can't be the brash, confident person I was before - turns out ignorance really is bliss.

I will work on it as i don't want to completely isolate myself, particularly with my recent marital issues, but I don't know what the solution is.

Lockerbie

Lockerbie

 For anyone in my part of the world, Lockerbie is a name synonymous with horror and pain.  It was probably the first really significant event in my life which had a personal impact, and looking back on my behaviour linked to it, I can see the early Aspie warning signs.
 I vividly remember the news report on the television, my mother wailing as she realised that the plane had landed on my Aunt & Uncle's house, killing them and their daughter, and at a stroke orphaning their two sons.  My mum was distraught as she had been close to her cousin when they were children, my dad was comforting her as she cried.

 Me? I was just annoyed that this had ruined my birthday. Sure I was upset, but mainly because I was feeling sorry for myself as this would now be what this day was be about.

Flash forward 4 years. On the morning of my birthday as I was getting my cake, my dad got a phonecall giving him the tragic news that his younger brother had committed suicide. He was devastated, and completely fell apart. I've never seen him as vulnerable as he was in that moment.

Me? I just flipped out that my uncle couldn't choose any other fucking day to do this. Looking back at it, its clear that all of this affected me badly, but I can't say it was through grief.  It was anger, self-pity, and selfishness that people kept ruining my day by dying.

I know it sounds like I was just a horrifically selfish teenager, and no doubt that is true, but no matter how self-centered someone is, surely an element of grief is normal for the deaths of 4 family members.  

Anyway, my solution for how to deal with these 2 family tragedies was to decide never to celebrate my birthday on that day again, but to pick a neutral day in May when nothing ever happens. I did this for about 10 years, and refused to acknowledge birthday greetings from my family.

Amazingly, my family went with it. They actually put up with this madness! And I am grateful for that, but came the day when none of it seemed to have any meaning any more, and I decided to take my day back. Ans since then I've been growing older properly.

But I wonder sometimes whether my rage and frustration about this, my inability to explain my rage to people, my lack of understanding of how important and painful all of this was could have - and maybe should have - been interpreted by someone as ASD symptoms.  I guess I'll never know, but it was from about then that I realised that I really thought differently to everyone else.

As a sad post-script to this story, my 2 cousins orphaned at Lockerbie have both since died. One stepped in front of a train, the other overdosed on drugs. An entire branch of a family wiped out because of this incident.

Stress in the workplace: How do I avoid it?

I find myself caught in a bit of a bind at work, at the moment. My co-workers expect me to do the same job I was doing before I had a month off due to stress and depression, while not seeming to realise that the job I was doing was the reason I had that time off.

So today, when I was asked to return to producing a weekly report rather than the monthly one I had changed to since coming back to work, I said no. Firmly. I even then explained that the repeated report writing was one of the reasons that I had had to take time off: too much expectation on me and too much criticism of the report, which was really only meant to be a tool to allow other people to complete their work. The criticism of the report became "shooting the messenger" and attacking it became more of a focus than dealing with the problems highlighted within it.

So after I made it clear that I wouldn't do it more than once per month, what I got was not a head-on attack but a barrage of sideways, sniping comments criticising me for being intransigent and questioning what use this report was.

To be clear, this data is available to everyone. Anyone could do this, given willingness to devote time to it. It’s not like I am the sole source of the information.

Anyway, I found that I couldn't deal with the passive-aggressive criticism and decided to deal with the situation in the best way I could, by picking up my things and walking out of the room. I fear, however, that this may not have been the best solution. It meant getting chased down the stairs by the deputy head of the department (my mentor) who wouldn't let me just go for a walk and clear my head but made me talk about it. As I didn't have the time to resolve it internally or calm down it means I resorted to a foul-mouthed tirade, threatened to walk out and let out my feelings on the guy who caused me the most grief. I don't think any of this was helpful. Looking back on it, my attempt to defuse myself has made me look unprofessional, childish, resentful, aggressive and unbalanced.
I feel I am letting myself down and don't seem to be able to find a way to fix this.

Finding out that I may have Asperger's has certainly opened my eyes to a lot, including why I react the way I do, but it doesn't always help me control my reactions or judge what is the best course of action in a situation. I can't gauge at the moment whether I did the right thing, but it doesn't feel like I did.

Right now I feel vulnerable and alienated, and I feel that I am being judged on the way I am trying to avoid the stress. I don't really know what I can do.

And as a beautiful irony, the guy who caused me to need to leave the room has just come to me to ask for a different report I promised him (this was no problem) and told me how hard it is to walk a line about firmly stating a position without offending people.

Not knowing is the worst!

In the next 3 days I am seeing a psychologist, and occupational therapist and undertaking an exam on accounts. I am also meant to be undertaking a project for my accounts qualification, but am currently 2 months behind and it is the last thing on my mind.  As well as that I have numerous projects going on at work that I am trying to complete within certain deadlines.

And its all very stressful.  It feels like  my time off for stress has had little or no impact on my work. I still feel under pressure that I am not sure is actually there. 

So tomorrow's psychologist appointment is the first in what I expect will be quite a number of appointments, or just a few strung out over a long period of time, to find out if i am likely to be diagnosed as ASD.

I'd like to say the diagnosis isn't that important to me, but it is. I'm that sort of person. I have to know. I can't just make a self-diagnosis, or have my doctor say "maybe its AS."  I have to know or I will obsess about it forever.  And as it is it is the thing that is on my mind virtually every minute of the day.

Its such an odd feeling, and it does make me anxious that I may have AS. I know there are people who would frown at me for saying that but it does.  Not because of what it is, but because I would have had it for so long without realising, without it being diagnosed, and in a lot of ways it means I don't know myself.  If I knew that I had something that affected my social interactions I would have looked into it and tried to integrate better, rather than assuming that other people have always got it wrong about me and are idiots.  I am open and honest, and very loyal to my friends, but I have damned few of them because I don't come across well on first meeting (except to other people who are similarly unusual, I have found) and this is part of my frustration.

I wish I had known.

But I also have anxiety the other way; that the psychologist is going to say "actually, you're pretty normal. you don't have ASD".  I can't believe it would happen, all things considered, but I can't help worrying about it.  I genuinely don't know what I would do.  I need other people to understand how it is for me. I need acknowledgement that I have these issues. My whole life has been a trial of frustration, loneliness, resentment, outbursts, inexplicable rage stupid, unjustifiable decisions (to any NT person), and as I have got older pretty regular periods of stress and depression as I fail to find a way to cope with my life.

I'm not looking for an excuse, but I do need to find who I am to find how to cope

The agony of work

Anxiety.

Its my constant companion. From the moment I wake up in the morning until I go to sleep at night I am either feeling anxious about something or awaiting the next visit from the anxiety fairy.

It is at its worst when I am at work, and my mode for combating it is to sink into the job itself as much as possible and to shut out the outside factors. However, this is not always possible for two reasons

1. I work in quite a busy office environment which is open-plan and always has at least 4 members of staff
2. I'm the admin manager.

Being the Admin Manager means that I am a destination, and that people want to talk to me and ask me questions. As long as they relate to the process of work, this is fine. I can handle that. But when it comes to gossip and general office chat I am not so good.  There is a lot within conversation that isn't said, so many significant glances, nods of the head and in-jokes that are over my head.

I find it difficult to judge whether people are deliberately talking around me as they don't want me to know something or whether they expect me to be able to interpret this implicit sign language.

I can't.  I just can't.

Dealing with my boss is very difficult as well. While I can interpret most conversations (I think) I find it difficult to deal with her very definitive yet vague statements of "you know what needs to be done. Please sort it out" because I very often don't know what needs to be done, and I hate sitting looking at her blankly, and having to say "no I don't".

I also hate the fact I can't play the office politics games.  NO, scratch that. I hate the office politics games.  I can't bluff, disseminate, use delaying tactics or distract by switching people's attention to another topic. it doesn't work for me and even trying just makes me more anxious.  If I haven't done something I will say so, unlike some of my co-workers who will claim they are "nearly finished", or that it is ongoing.  The worst thing about it is that I am the one who ends up looking bad and ineffective, simply because I have been honest in my appraisal of my own work.

And of course people don't realise that this bothers me because even I'm new to being AS, and I certainly don't expect my co-workers to take it into account. Why would they? It really is my issue to deal with.

Every day I have to remind myself that no-one is doing any of this to deliberately upset me. Every day I try to bury myself in the work and interact as little as I need to. Every day is a struggle, but its a struggle that I feel I am getting on top of as I accept my AS nature.

Missing the obvious point

My biggest problem, I feel, is that I miss the obvious.  I can sometimes see a lot within a situation which other people miss - particularly if its a repetitive process - but I really do have a blind spot for the immediately obvious and the long-term consequence.

Today's example is this:  Wife and I were talking about the fact that school happens again in about 10 days, and she was saying she's not entirely looking forward to going back to seeing all the other parents and having to deal with them, and I jokingly suggested she find a job that pays the same as mine and we swap. She laughed a little, then said "if I thought you could handle it, I would give it some serious consideration".

I was a little taken aback.  "what do you mean?" I asked "I can certainly do the housework and get the kids to and from school". "Yes," says wife "but can you cope with the parents? Can you cope with the small talk? Can you deal with them watching you, how you treat your kids, judging you?"

"Dead easy," says I, "this is where I have the advantage of not giving a fuck what other people think of me". At that point, eldest daughter comes into the room and announces she needs the loo.  Cue a break in conversation.

When wife comes back she says "I find it hard sometimes that you completely dismiss things that I think are important. I don't make small talk to impress people. I don't often want to spend time talking with them, and I don't really care about them judging me, but our daughter has Autism and they will judge that, and they will judge her, and the only way that we can try to break down the barriers caused by her being different is by being friendly and accepted.  She is going to need friends, and we can't afford to alienate the parents of people that she wants to be friends with."

And with that statement I suddenly understand. Her concern for how she is viewed is nothing to do with her, or with me, but to try to ensure that there are people watching out for our eldest when we're not around: people who will accept her odd little ways rather than trying to change them, people who will accept her, not ostracise her and most importantly try to make sure that people see her first and foremost as a lovely little girl, not some sort of disabled weirdo.

And without that conversation, I never would have understood. I would just have gone on thinking that she spends too much time worrying about what other people think of her, and not understanding why.

I love my wife. In all the world she is the only person who has ever been able to get me to see someone Else's point of view, and right now i think that might be the only thing that will enable me to be the dad I need to be.

Another week passed.

This is a real learning experience for me. I don't think I have ever spent so much time examining my own conduct, thoughts and behaviour, or considering what the impact of my actions are on those around me.  I don't mean that to sound selfish, but I have just never put a lot of thought into the consequences of my actions.

What is clear to me is that be spending this time in self-reflection i am becoming much more aware of how I operate, why I get stressed and finding my own ways of reducing that stress (this blog being one of them).

I told my wife today of one of my odd little habits at work, and it was the first time I have seen a certain look on her face (which I am interpreting as "OK, that is weird"). I told her about my compulsion first thing in the morning to wipe off any data on the whiteboard relating to staff who were sick/ on holiday as soon as the information was out of date, and that I can only do it with the index finger of my right hand.  It sounded odd to me as I said it, but it also happens to be true.  I can stop myself, but I don't see why I should.

I've also started looking back at younger days with a more critical eye. There were always things I did in my life that happened when I felt like I was detached from the incident. It was almost like I was riding co-pilot with myself, in control but somehow separate, with complete emotional detachment. In this state I could (and did) do some really stupid things, the worst one being when I deliberately crashed the car just to see what would happen.

Is that part of being Aspie, or part of ASD generally? The ability to just do something to see what will happen, something that you intellectually know to be a very poor idea but that you feel the need to test for yourself.  I was very lucky I didn't hurt myself or anyone else that day, but I certainly wasn't considering the consequence of my actions.

I just wanted the experience.

Update: After posting the question on Twitter I have had someone come back to me and tell me that they also have the compulsion to crash the car just to see what happened, but that they can't afford to (in more ways than financial). I am so glad that its not just me!  These odd little compulsions of curiosity occur to me all the time (e.g. I wonder what would happen if I suddenly kissed that girl?) and they do take more than just casual dismissal, I genuinely have to reason it out to myself why I shouldn't do it, where I think for NTs the thought is just dismissed, or possibly contemplated without any genuine intention of carrying it out.

My life in bullet points

I recently found this article on How to describe an Aspie to a lay person whic was very helpful to me as it had descriptions of social situations from the Aspie perspective, and a lot of it was very familiar.

What i found particularly useful was the layout of the 3 categories AS is determined by as it is the first time i have seen it in a fashion which I can easily relate to myself.

Social Interaction

He or she may:

• appear to be indifferent to others or socially isolated.
• be unable to read social cues.
• behave in what may seem an inappropriate or odd manner.
• appear to lack empathy,
• avoid eye contact when under pressure.

Social Communication
He or she may:

• have difficulty in understanding tone of voice, intonation, or facial expression.
• make a literal interpretation of figurative or metaphorical speech.
• find it difficult to hold a two-way conversation.
• become agitated in response or come across as argumentative or even over-compliant.
• use formal, stilted or pedantic language.
• have poor concentration and thus poor listening skills.
• be honest to the extent of bluntness or rudeness.

Social Imagination
He or she may:

• have difficulty in foreseeing the consequences of their actions.
• become extremely anxious because of unexpected events or changes in routine.
• like set rules, and overreact to other people’s infringement of them.
• often have particular special interests, which may become obsessions.
• find it difficult to imagine or empathise with another person’s point of view.

right from point 1, that's me. i find it so hard to lead in a social situation and really need people to come and start the conversation with me. its not that i don't want to participate, i just don't know how or where to start, and even when i do its normally in a really inappropriate or unusual way.

I'll have to go and let aspienaut know I have linked it, and do more self-examination against it later.

Emotional reactions

It's always surprised me when I have later looked back on things how i react to things emotionally. I have 2 daughters who were both premature, and in both cases there was the very real danger that either they or my wife would die, but this was all taken in stride. I always thought that I would vent my emotions about it later, but never really did. Actually, first time my main emotion was happiness that I would have the house to myself for a few days. It's horrible to admit but its true.

In fact now that I think about it I remember being annoyed when the hospital kept changing dates and times of events happening such as operations and I was more annoyed about the late change of detail than I was concerned about the operations.

I suppose its that I can easily take on board any fact as it relates to me as long as the schedule doesn't shift.
That's good, right?

Childhood indications

So, this morning I was thinking about things I did as a kid which were maybe indicators to ASD. I know my mother took me to the doctor due to my behaviour but that was,well before aspergers was accepted as a condition by the NHS.

I know I have an obsessive personality and have for years avoided things on tv that would suck me into pointlessly enforced routines e.g. soaps but with other things I get so into them that I find it hard to do anything else with my spare time.  I remember becoming so obsessed by football stickers that I stole money from my parents to try to complete the collection. I couldn't explain why it was so important to me.

I also remember doing really antisocial things that even at the age of 10 or so were gross e.g. getting into trouble at school for making people sniff my fingers after I put them up my bum. I don't know whether its related but I'm also terrifically repressed and find it hard to talk about things like that. This is the first time I have talked or written of that incident and it still makes me feel awkward.

I know its going to take a long time to get my head around all of this but I have been able to talk to my wife about things that bothered her or me in light of this and its going to help us both. Apparently I walk away in the middle of conversations and it bothers her. I didn't know I did it but its common apparently, so I'm standardly abnormal at least.