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.

Emotional Dissonance and Edmund Blackadder

I love Backadder. It is one of he greatest shows of all time, and it was on TV at just the right time for me to become hopelessly obsessed with it.  I can quote it line by line (for most episodes of the entire 4 series run) and no matter how many times I watch it, it doesn't stop being funny.

Having seen every episode somewhere north of 20 times (and some episodes many, many more) I consider myself to be something of an expert on it, being able to tell you names of episodes, characters, actors, and can tell you what the best scenes were, the funniest dialogue and the best of the cunning plans.

So, as an expert on all things Blackadder, it upset me greatly for many years that people kept disagreeing with me about the best episode.  It just doesn't make sense! I understand it better, I have watched it more, I think I have a better measure of judgement.

No, I have always argued, while that is a good episode, it is not the best.   And its always the same one! Everyone says that the final episode of Series 4 - Goodbyeee - is the best.

I used to argue by series.

Series 1 - The Witchsmeller: Better
Series 2 - Beer (or Potato) absolute classics!
Series 3 - Awesome Series! Almost everything is better, but particularly Amy and Amiability, and Duel and Duality (THIS is the best episode).
Series 4 - Private Plane and General Hospital are both awesome.

And people would still argue.

So I watched it over and over again and while I enjoy watching it, I just can't see it, can't understand it. Why do rational, sensible people tell me that this episode is the crowning achievement of Blackadder, and a fitting epitaph for the show.

And only now, when I have a diagnosis, when I understand how I am different to other people do I get it.  It is not the dialogue, the acting, the comedy or the content which is superior; it is the emotion, it is the understanding that all of those characters whom we have grown to love are all going to die and the characters know it too!

When the guns are silenced and the soldiers step up to their ladders, it is the certain knowledge that this is the end.

And what sets it apart as an episode is that final scene. This is a replica of what hundreds of thousands of young men went through in those four awful years; stepping over the parapet of the trench into enemy machine guns, knowing that they would likely die in a foreign field. Invoking the Zeitgeist, finishing with stillness, silence and poppies is a beautiful, tragic and genius moment of television.

I feel the power of it now, as I think about it, and imagine the fear, resignation and unspeakable bravery of those men, and I will never again question anyone's insistence that this is Blackadder's finest moment.

The Process

On 21st of August, in a small, secluded little collection of buildings, I began my assessment process.

It has taken a year or so to get to this point, and the outcome is not guaranteed, but I have no words to describe the immense sense of relief to be talking to experts, discussing Aspergers as a condition, to be undergoing diagnostic process, to be able to just let go and tell someone who might understand just how hard it all is on a daily basis; how hard it is to care, how hard it is to make sure I am giving appropriate responses, how hard it is to keep control of my tongue and make sure that I'm not inadvertently offending the world.

I have seen them 3 times and they have decided they have all the information they need to consider what, if any, diagnosis there will be.  While they couldn't say for sure, they did say that there is a very good chance that Aspergers would be the diagnosis.

And I got an odd rush of emotion; sadness, anger, anxiety and relief. I had to take a few minutes to sit in the car on my own quietly just to let it all sink in.  Finally, maybe, I have a framework to help me understand myself. But isn't it funny that I need someone else's permission before I can fully grasp it?

My self-destruction: an analysis

I am aware I have been driving myself down a self-destructive path.

I am aware i am overeating and putting on weight and not only am I not addressing it, i am getting more gluttonous

I am aware that I keep not taking my medication, and every time I think about it, and look at it, I decide against it.

I am aware that I am suffering from depression, but I am no longer addressing it

I am aware that I am a slave to my rage, and I can't control it.

I am aware that I am close to the edge of physically lashing out, and I am not restraining it.

I am not really aware of why.

This weekend has been horrific. Twice I have had a complete screaming, lashing out meltdown in a fashion that I have not had since my late teenage years, and on both occassions the catalyst has been something very minor.

But the meltdowns have been linked: both of them have been due to DD1 giving no ground and not compromising, just as I would have done at her age. Suddenly I see how hard it was for my parents to cope with me growing up; how hard it must have been to have someone so absolutist who had no fear, no sense of compromise, and no matter what will only do what they want to do.

And I have 2 of them.

But my reaction to the minor things was far more than was necessary: slamming doors, screaming, hurling furniture and overturning bins.

If i'm honest, I'm surprised wife hasn't left me.

And maybe thats what I want.  Maybe its just time for me to admit that I am not flexible enough, and not able to cope with living in a house with 2 kids with ASD while trying to cope with my own limitations. Maybe I need to be honest enough to say that what I want is absolution from responsibility, but to achieve it i need to become the wretch no-one wants to live with.

I know it seems incredibly selfish -  No, not seems: IS incredibly selfish - but I just need time and space away from my kids to get some sense of sanity which I am sadly lacking at the moment.

I have been through the wringer with all of this though. Rage, hate, shame, self-pity, self-loathing, guilt, anger and, once again, those suicidal thought.  I stood in the bathroom on saturday after my meltdown, preparing to shave with my cut-throat razor, and i found myself simply standing, naked blade open, feeling its weight in my hand, looking myself in the eye, and feeling that urge that I get to do something I know I should not.  I actully had to picture what using it on my own neck would be like and the horrific aftermath for my family, including the permanent mental scarring of my children before I could move on, and simply shave.

And now, looking back at it, I'm scaring myself. Seriously scaring myse;f  I may well have scared myself out of this fugue.
 God I hope so.

So, where am I now and what would come next?

well, for a start i'm going to make sure i take my pills. they may not make me happy but they certainly don't make me feel this bad.
I am going to try to find rage counselling
I am going to try to find some physical activity to give me a physical release
I am going to try to find a hobby that takes me out of the house and gives me a change just to be me on my own terms, possibly with other people.
Most importantly i am going to be inclredibly thankful for the wonderful, supportive wife I have. Yes, we have had ups and downs, but I don't know if anyone else would have tried to strap-in with me and help me, particularly after my completely aggressive flip out. I am sure she was scared of me in that moment, but she was more concerned than scared and helped me find the way out.

I truly do need to appreciate her more.

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.

Is there a socially acceptable way to say "your tits look bigger!" and other stangeness

I've fallen into bad habits.

That is to say, I've fallen into my old habits, and am acting like nothing is different (again!). I have to admit its very difficult to reconcile the ASD side of myself with my self-image.  I find it hard to acknowledge that there is something different about me (there definitely isn't anything wrong with me!) when what I am is all I know.

But there are days, like today, when my strangeness is right out there in the open and I just can't escape it.  And when i do, I come running back to blogging like an old friend who will not judge me. Maybe this'll teach me to do it more often again. Who knows? (rhetorical)

Today alone I have had 2 incidents within the space of a few minutes which unbalanced me.  Firstly was when I overheard a conversation about one of the people in work needing to borrow a laptop - a scarce resource at the moment - and being told that we couldn't help. She then realised someone else who she would be working with may have one, and expressed this by saying "Steve might have his laptop, mightn't he?"

My face flushed and my stomach grew taut. I could feel myself starting to hyperventilate and had to keep my head down until they left the room. I immediately scuttled over to another colleague and asked "what do you think of the word "mightn't"?". She pondered this for a moment and said "well, its a colloquial use term, but not one I would use myself."

I frowned "so my instinct to throttle her for it is an overreaction?"

"definitely".

 That was an hour ago, and I still don't think it is! MIGHTN'T?!?!?!?!?! There aren't enough swear words in the world to express my distaste.

Shortly after that, I walked past another colleague who is lucky enough to be pregnant again, and I noticed that as well as her swelling belly, her chest is growing. She is fairly flat-chested normally, so its noticeable.

 I wanted to try to find a polite way to mention this, which appears to be an impossibility

 wow, you're really starting to swell now.  Have you had to buy new bras yet?  no, that makes me sound like I am interested in her underwear.

Are your nipples all sensitive? hmm... a definite no.

how many sizes have your boobs incre...just stop.

I found myself stuck in an obsessive loop: I can't not say anything, but there is nothing I can say, and I started getting frantic and panicky, and had to go and talk to the new girl (who is middle aged and sensible) with whom i have developed a decent working  relationship, just to say to her "Can you tell me if there is a polite way of telling a woman "your tits look bigger". I muddled this sentence out all in one, so it was more like

"Imsorryi'mnottryingtobeoffensivebutcanyoutellmeifthereisapolitewayoftellingawoman
"yourtitslookbigger"becauseihavetosayitandmybrainismelting!!!"

she took it in her stride, laughed with me about my dilemma and gave me a few tips on talking about how well my pregnant colleague is blossoming/ blooming/ looking flush with health. All of which will apparently be interpreted as "i can see your bosom expanding."

So I did.

And I am left feeling disappointed as I don't feel I said what i wanted to say, but at the same time the compulsion has left me and I can move on.  I'm glad its over, but it has jst served to remind me that all it takes is 2 minor incidents in quick succession and I am close to my limit.  I need to find a way to cope better.

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.

The anatomy of love

I have said for many years that you choose who you love, and I believe it. With all the girls I have pursued over the years I remember actively deciding that I was going to pursue them, and effectively selecting them for love.  I know not all of them have appreciated this but hey, everyone was someone's stalker once, right?


But now I am looking at things with my Aspie hat on I have started wondering if this is normal.  The fact that people have disagreed with me about it many times suggests that it is not.


From all around me in advertising, films, literature and people's descriptions of their own lives I get the message that love is an impulse; uncontrollable, unpredictable, that "the heart wants what it wants."


Not mine. My heart wants what I tell it to!


I've always felt that people who walk the "heart want" line are simply absolving themselves of responsibility to their existing relationships, being lazy or simply (badly) justifying adultery. I read a quote from Johnny Depp recently, and while I can't remember it word for word, it was along the lines of "if you love 2 things equally, choose the second, as if you really loved the first one you wouldn't have fallen in love again".  This just smacks of desperate justification and I just hate this binary view, that it is only possible to love 1 person.


But what if I am wrong? What if love is that wild and unpredictable? What if I am defective in my emotions, and simply don't have the normal "love" drive?  I am very much a slave to some of my other emotions - rage, frustration, anger - but I never hear anyone waxing lyrical about "the hands punch what the hands want to punch", but this is where I feel my strongest emotions lie, and when I lose control of them I know that people around me worry as I become aggressive and unpredictable, and it takes great effort of will not to be violent (I am well practiced by now. Violence only happens to inanimate objects)


But I wonder. Is this what neurotypical people feel when they are in love?  Overpowering, madly distracting, unfocused emotion that practically paralyses them until they can deal with it?


If so, I'm glad to be love-deficient, and glad I make my own choices.

The pain of a "new" aspie

This is the email I sent to my wife yesterday, trying to explain my behaviour when she refused my help twice in the morning when she was trying to do a quick repair on a child's shoe.

"I'm sorry my frustration boiled over a little this morning.  You're right. You not taking an elastic band is nothing to get upset about. 
 
Its other things that are piling up, things that are concerning me more every day.
 
Since the Aspie question was raised, I feel that you have been looking at me in a different way, and I'm not really comfortable with it.  I always seem to be in your way, or interrupting you, or feel like I am interfering in something where you would rather I didn't.

I feel sad that trying to hug you elicits no reaction any more. I feel that when I kiss you, you seem relieved when the moment passes. Maybe all of this is my imagination, but it doesn't feel like it is.
 
I don't feel like you are viewing me as a partner any more. I feel like I am being seen as another child to be "dealt with", a burden to be borne and a problem to be handled.
 
And it frustrates me and makes me sad.
 
the elastic band thing was just another little thing on top of a pile of neuroses I have at the moment. It just felt like yet another way where I was just getting in the way, especially after my other suggestion had just been dismissed when i was trying to help you avoid having to stand holding a shoe for 5-10 mins.
 
And in the long run my worry is that we won't get past this, that "living with 3 disabled people" is going to be too much for you to handle. 

To my eyes it already is, and I wonder whether you're trying to figure out how to do it and  keep sane, or figure out if you could deal with the girls without me.
 
Honestly, I have days where I think you would be better off without me as I  would be 1 less person you feel you have to take care of, but then I don't know  how you would deal with the girls on your own.

I certainly wouldn't blame you if you said "too much".
 
I know that this has been hard for you, and will continue to be, but the thing that is hardest for me in all of this is not the stress of the summer, not the AS, not the reflection on my whole life, but its facing you every day and feeling I am less in your eyes."

What I'm hiding from

For a week or so now I have been aware that I'm avoiding writing a blog, I'm avoiding tweeting, and I am avoiding thinking about or addressing "the Aspie Question".

And the reason for it is pretty simple, and pretty sad, really. I don't want to acknowledge that I am Aspie.

There are some days where the knowledge of AS and how it relates to me is a real comfort, as it means there is something that explains the often inexplicable in my life: the odd choices, the strange habits, the behaviour that even I have never been able to justify.

But then there are the other days, where I realise how different I am, how little I understand the people around me, how often I am excluded from conversations in a passive fashion, just because I can't read the body language of others, and I don't react as they understand.  Sometimes I look at it, and think that this is too much of a burden to bear, that if I stop acknowledging it I can continue on with my life as I understood it before someone suggested I might be Aspie.

However, today has stopped me in my tracks because of two incidents, each of which is powerful in their own right and together brought me to tears.

At my work, one of my colleagues has M.S.. I am her line manager, but she is one of the only people who I have told about my AS issues, because I feel she understands what it is to be different but look the same, and I really value her opinion and just to have someone to listen to me who can get it.  To be honest I see her more as a friend than a colleague. A couple of days ago she had a M.S. relapse, and as a result has permanently lost some feeling in her hand, her arm and her leg, and some bladder control.  She told me this, and I was truly sad about it.
 Today, I was spoken to by my boss, who told me that my colleague with M.S. doesn't feel she can talk to me as I gave very little reaction to her news to me about her relapse and her lack of feeling in her hand.  I was appalled! I am really sad for her and sometime give her lifts into work to try to make things easier for her, and am genuinely concerned for her well-being  but to hear her view, apparently all I did was stop typing for a few seconds when she told me, then started typing again.
 When I told my wife about this, she said that's normal for me. the bigger the news, the more emotional, the less likely I am to react to it. I simply sit still and absorb the information. I wasn't really aware of this, but I thought back and realised that she's right. Petty things can get me very animated. Big things stop me dead.

But following on from this, wife said to me that it often appears that I take things too well, and I joked about when our eldest was born by c-section. I was at work and the hospital called me to tell me that I didn't have to worry and that the baby would come today, I just said "OK, call me if the plan changes" at which point the person on the phone said "ah. no. you're maybe being a little too laid back. you need to come to the hospital now!" Wife didn't laugh though. she pointed out that she had thought about that recently, in the light of AS, and realised that this was typical of my reaction. someone said not to worry, so I didn't, but it hadn't even occurred to me that she might feel lonely, or in need of company, sitting lone in a delivery ward awaiting an emergency c-section, which is major surgery when you come right down to it.

And so I sat there, at the dinner table, considering that moment of 5 years ago, realising that not once had I considered how lonely and scared she might have been; how worried for our baby's health. I don't know what I did think, I really don't. but sitting at the table, for the first time, I became tearful thinking about how hard it must be on wife. 2 AS children and an AS husband who is now undertaking a journey of self discovery.  How hard is it on her to hold all this together. how often her needs get put last. how often her desires get overlooked.

And while I deny my Aspie nature I will never change, and I will always be that self-absorbed.  So, my task tonight is threefold:

1 - Read theories on Aspergers and dealing with it by experts, and find things that work for me
2 - Write my blog and remember why I started doing it in the first place as a self-therapy
3 - Acknowledge, and never forget.

Some days its hard, and some days its ok, but its an ever present fact that I need to face

I am Aspie

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

An inexplicable worry explained

Around my mid-teenage years I remember becoming aware that I could be help responsible for things, a concept that seemed to elude me until then.  It was only when someone pointed a pretty serious accusation at me that I realised that things that I did and said could have serious consequences for me in my life.  At that point I resolved always to be completely truthful. Until then I had used truth or lies as I felt necessary, although there is no doubting that I am an awful liar.

But from that point I have always had the nagging worry that at some point i was going to end up in prison, and i don't know if that is normal. I assume its not. After all, why would people just generally worry that they were going to end up behind bars?

I have never been able to fully grasp this worry. I am generally a straight-up, honest and law abiding individual. Even times when I have broken the law during my wild years are unlikely to have carried jail terms: petty theft, smoking weed, illegal streaming/ downloading. But still, in the back of my head: you're going to end up in prison.  It really didn't help when wife's dad ended up in prison recently. It is the first time that it has been so close to home, and I overreacted hugely (of course).

But I begin to see now that the worry about prison was my brain's way of telling me that there was something wrong, that I didn't quite fit, and that I had to be extra careful as my rules and the rules of the NT world in which I live can clash.  A perfect example of this is when I was driving the other day and someone did a really stupid overtaking manuever on a fast junction.  Because he was breaking the rules I effectively tried to run him off the road, then when we reached the traffic lights I pulled in front of him, blocking 2 lanes, and had a confrontation with him on a busy road.

I started that. I could have just let him go, with his bad driving, but I almost crashed into him (my fault) then blocked the road (my fault) then nearly started a fight (which would have been my fault). if the police had become involved I think i would have been in serious trouble.

Looking at myself through the AS mirror I can see how close it has come a few times in my life that I had never realised before, and I need to be very careful which what I say and do to avoid getting into trouble.  I can't believe its taken me this many years to realise it.

Still, hopefully now I can avoid that prison which has been unconsciously following me around for years.

The strain of relationships

In  my life I have had very few serious relationships, and wife is the first woman I have ever lived with as part of a couple. I am aware that I have always had trouble interacting with girls I find attractive, and have found myself drawn to the  but unable to talk to them, first manifesting in high school with a girl I had a crush on whom I followed round during breaks. If I didn't know where she was it made me feel uncomfortable, and I know that it bothered her.  While she was a nice girl and we were occasionally friendly, she did have to ask me to stop following her around more than once.

It took me until I was 19 to have my first girlfriend (let's just skip over a couple of periods of investigation with other kids my age in late primary school years) and to become sexually active, and while we had a relationship which lasted 3 years it was not often healthy as I was obsessive and jealous and she was sexually liberal (and inducted a number of my friends in the ways of men and women)

Other relationships I have had have been of mutual convenience, self-destructive, short-term flings or simply disastrous   Fact is, wife is the only woman I have ever been with who I have felt comfortable with, who has made me see the world from another point of view.  I find her fascinating as well as lovely, although like all other people there is a lot she talks about that I have no interest in, but I am not so self involved as to completely ignore her. I just do the guy thing of smiling and nodding.

But...

but I wonder what harm I am doing her by staying with her. We have 2 children, one of whom has been diagnosed with autism, one on the path to a diagnosis of AS and then there's me, realising that I have AS, or am at that end of the spectrum.  Its all so very unfair on her. Wife is beautifully free-spirited, spontaneous, life-loving, a hippie and proud of it, but the hand that life has dealt her means that everything has to be organised all the time. There can be no spontaneity, no surprises, no sudden, unplanned decisions.  Routine, planning and organisation are her life now, and day by day I see the joy draining out of her.

And I wonder whether things would be better or worse if I was no longer part of the equation.  Since I have been with her I have been through 3 periods of depression, and there's no guarantee that this wont increase.  I have had 4 significant episodes of poor mental health in 8 years, and none before that(at least none where I knew that was what my problem was).

I am concerned that my mental state will only get worse, and that she will end up having to be nursemaid to 2 disabled children and a disabled husband who is mentally shattered, and I don't want to do that to her.

I am sure that defining the AS will help significantly, but I managed for 30 years without succumbing to depression, 30 years where i must have had AS, so it must be more than that.

What to do troubles me.  I love wife very much and don't want to do the wrong thing, but is it harder for her to deal with 2 disabled kids with the help of someone like me, and have to deal with my issues too, or to deal with them on her own?

Is this my lot in life? To never fit on to a relationship, to take the joy out of living?

I don't know, but its a thought that will certainly remain with me for some time.

The fear of anxiety overload

Today's going to be a bad one. I can already feel it.

Wife had car trouble yesterday that I thought I had fixed by charging the battery, but while the dash lights come on, it still won't start.

So my morning began with failure in the rain, and leaving a very stressed wife at home who had slept little because of her anxiety about the car.  all i can think of now is how little use I have been to her in this, how much stress she has in having to deal with three ASD people in the house and how much better she would be if I reduced that number to 2.

I just want to run away. And at this moment in time i think she'd let me.  And now I am in work all my worries about the job are smashing into me as well.

So I am sitting at my desk fighting back the frustration and tears, much like I was 6 weeks ago when I had my collapse that took me out of work for a month.  I'm not sure I can cope with today.

And I am thinking that the reason why I am so stressed now is that I can't cope with wife's stress. It wouldn't be the first time I have felt out of control when she get stressed, and i think its because I am so used to her being calm, measured and reasonable. Anything other than that is a change from the routine and affects me badly.

I think the idea that Aspies can't empathise is definitely a myth. Its just that, like so much else, we don't display that empathy in the same way as NTs. I absolutely empathise with wife, but instead of making sympathetic noises i take the stress on board and end up as anxious as she is.

I'm not sure that's helpful, but as I type it I am analysing and it is actually making me feel better. Maybe just sitting down and rationalising out why i feel the way i feel is exactly what i need.

I need to contemplate this further and come back

The selfish view

For many years I have been aware that I am very self-obsessed in a way that I don't think other people are. Its not that I am vain about my looks - that would suggest that the opinion of other people was significant in some fashion. It could almost be said that my lack of regard for how other people view me is a sign of my lack of awareness.

But I am aware that I am selfish, and in some ways I feel very bad about it, and in the past I have tried to make up for it by being very humble, grateful and welcoming as much as I could be. I never spurned a gift (no matter how terrible) or turned down a kindness (even if it offended me if i knew it was done out of goodness). I have always been prepared to put people up if they need it and feed them if they are hungry.  I try to fight this nature of mine, but its just so easy to find myself caught in my own head and only able to understand how selfish I am being after a situation has passed.

At the moment I am marvelling at the simple fact that I have had a daughter who has been visibly developmentally challenged for 3 years, treated as disabled for 2 years and diagnosed for 1 year and yet it is not until now that I have really taken any huge interest in ASD, and that is because it now applies to me.  Worse is the fact that i have another daughter who has recently been put on the pathway to an Asperger's diagnosis and I still didn't investigate. 

Only now that its me. Now I'm involved.

Oh I know that the wife provided information from the Internet and doctors, support workers and teachers etc.. and that seemed good enough. only now, sitting in the middle of it, do I see how unfair it has been on her to be forced to attend all the meetings, medical and social, and find all the information and the strategies for dealing with the girls. And now here I sit, obsessing about my own condition and taking the time to post it all on here. back in my own head again.

Sometimes I really hate myself

The name of this blog says it all, and i need to remember it: its not all about me.

The current conundrum

See, this is the problem with my tendency to DECIDE. I have DECIDED that I have ASD before I have been diagnosed, although I don't know exactly where on the scale I am.  Asperger's is definitely a possibility  demonstrated by my BAP test results

the problem is that people who have known me for some time have reacted with a sort of polite indifference bordering of incredulity, and while no-one has said it to my face I can see that there are people who simply don't believe me. I shouldn't be surprised. there were plenty of people who didn't believe that there was anything wrong with my eldest who has been diagnosed as severely autistic, including our own doctor.

Its just galling that I am going to have to cope with this while under scrutiny from some people, particularly people in my work, who simply think that I am lying, acting up, playing for attention of simply talking bollocks.

 I've undertaken a number of other indicator diagnosis tests such as the AQ test which is a recommended AS test used diagnostically by professionals for adults (or so I have been told) where I score 43 out of 50. given that the wife scores 5, and that the advice is to talk to someone if you score over 32 I'm going to stick with my self-diagnosis until the NHS catches up (which will likely be in about 18 months time)

I know I have plenty of NT traits otherwise this would have all been picked up years ago. as it is people have merely been aware that I have had certain emotional control issues (put down to hormones in my teens) and have always been a bit of an oddball. certainly my collection of friends never helped with that perception: all RP geeks, little in the way of "normal" behaviour and charisma, all natural outsiders.  so when you are odd but within a group where your behaviour is not considered that unusual, people stop considering that you may be anything other than a little eccentric.

knowing about this years ago could have saved me a lot of emotional trauma

But the fact of the matter is I currently feel uncomfortable at work as I have people around me whom I genuinely feel do not believe me. so what do I do? what can I do? how do you convince someone that you have ASD when they have known you for almost 2 years and you look and act to all intents and purposes normal. I have been regulating my behaviour for years without relating it to ASD at all although given that i had to have a month off with stress obviously not very well.  knowing I'm ASD should make things easier, but what do I do now that I have told my work that this is what is happening with me, i feel if anything that it is making things harder.

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?