@Aspienaut – Wired Differently

Aspienaut – WIRED differently


Aspienaut – WIRED differently

I needed it, more than I’d known. The blue sky and the low winter sun.  A beach dotted with groups of people walking into a coming year.  It was all movement.

People walking slowly along the beach as the sea rolled back and forth, back and forth.  Loud yet soft.  The noise, above all, is rounded, circular.  Over and over, a perpetual falling. Then, there is that sound, the sound, the one I love.

A rotation and spinning, all on the out sweep.  As the sea rolls out, pebbles are spun back towards the breaking waves with a sound like natures static.  A beautiful chaos. 

© Paul C Siebenthal Jan 2013

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I was asked by a fellow aspie how I stay well when times get tough and I’m struggling, as many of us do, both on and off the spectrum.  It has been a really difficult time over the holidays and so I naturally started thinking about this question and decided to write this post.

Why do we suffer so?

I am going to explain why I struggle at times and I suspect that many can relate.  Being an aspie makes for a particular type of mind.  This type of mind, as I have spoken about many times, gives us some great insights and talents but it also comes at a cost.  I’m sure it will be no surprise to aspie’s and those who live with us that we struggle with human interaction.  We are more comfortable with objects than people and for very good reason.  People confuse us!  We struggle to understand their facial expressions, even the meanings of their words.  

We can also be very easily misunderstood.  I lack facial expressions and I’m often, even at the best of times, regarded as sullen and unhappy.  The tone of my voice doesn’t vary much.  I rarely share, other than my special interest at the time or many of my thoughts with others, or remember to ask their thoughts or interests.  I have very black and white thinking and so if I see someone regularly, they are in my life and I remember they exist.  As soon as they are no longer there I forget about them.  I forget to keep in touch.  I also struggle to remember that other people have different thoughts to mine, have minds of their own.  Add in sensory issues, obsessiveness, difficulties coping with change and much more besides and you soon end up with a mind that is prone to serious introspection, isolation and loneliness, which can then lead understandably to depression and anxiety.  That’s on top of having to manage an Autism Spectrum Condition.

I talk a lot on twitter about not suffering from asperger’s but from the ignorance of others.  You may question this given what I have just written but I still believe that it is often the reaction to and misunderstanding of the above that causes so much suffering.  All anyone wants is to feel that it is ok, truly ok to be who they are and be accepted.  People on the spectrum rarely feel like this because the very thing that allows this, is often your relationship and the understanding you receive from the people around you.

Now I have brought us all down, lets look at how we can stay well and get through those difficult times.  What I am going to describe is very personal to me and describes my own struggles and journey but I would hope others may find it helpful.

I have found medication helpful in managing severe recurrent depression and anxiety and have been on medication for 4 years.  I have also found Cognitive Behaviour Therapy and therapy in general helpful in times of crisis.  I found getting a formal diagnosis from a clinician I trust and respect very useful in order to understand myself better and to identify the areas I particularly struggle with.

I have only a few close friends but those friendships, although very challenging at times, are extremely important.  As are my social media friends and connections.

Ironically, it is my Aspieness that keeps me going.  My ability to focus on my interests and my need to learn and understand.  Even when I’m really struggling and I can’t think straight enough to write or read it is the desire to do so and the pleasure I know I’ll get from it that really helps.

Personal relationships are also valuable but after a marriage of 14yrs that failed and a recent relationship that has also ended I still find, despite the burning need for comfort and support, close personal relationships extremely hard to cope with and so for me at the moment it would seem I cope better living on my own.

For me, coping is about finding your Aspie strengths and developing them.  Coping with the cost of that, the best you can and asking for help when you need it.  I can’t over emphasize how important it is to ask for help.  People both on and off the spectrum shouldn’t accept being depressed and anxious as just part of their lives.  Yes, we are prone to such things but we often just need a little help to cope better.  Don’t be afraid to ask for professional help when you need it.  You are not alone. 

©Paul C Siebenthal Dec 2012.

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19 Dec6 notes

Just a thought!

Seems important to remember at the moment.

© Paul C Siebenthal

14 Dec Click here for Aspienaut @Squag.com “The Extraness of Aspieness”

New regular posts for Squag.com. Squag is a curated online experience for kids on the autism spectrum (and their siblings) that allows them to initiate, explore and self-discover.
My posts will be under the heading, The Extraness of Aspieness, and will be aimed at youngsters on the spectrum to help them learn more about what makes them so amazing.

See Video:

13 Dec1 note

Wired Amazingly: Ryan Larmour (a.k.a W.A.D) 16 yr old Northen Irish Rapper.

Autism doesn’t hold him back!!

W.A.D – We’re All Different (Official Music Video) (by Ryan10151)

A must see!!!!!!!!!! 

I was asked this week to write a post about how to deal with older parents who do not accept their child’s asperger’s.  I will try to answer this question in quite general terms by looking it it from a slightly wider perspective, so here goes.

Then they say,

“Yet you look so normal, but now you mention it, I always knew there was something strange about you!”

or perhaps:

“It’s always something these days, you were a difficult child and now you’re a difficult adult, its just who you are!”

It can seem at times as though we’re being attacked and have to defend our diagnosis and sometimes it’s as if we’re expected to just hand it over and let it go. 

It always surprises me, even now, to discover that other people have thoughts different from my own, have their own minds even (who knew!)  Yet I am still so effected by their comments, their view is very powerful to me.  I believe this in-part is because I do not think about other peoples views or thoughts and so it always comes as a shock when they say something I don’t agree with or show another view of the same situation.  It’s because of this that I am so affected by their comments, because to me, believe it or not, I presumed their views were the same as my own and therefore when they challenge me, it feels so very fundamental.

When someone says, ‘you don’t have Asperger’s!’  It is very much like they are challenging your sense of self.  Now that I understand myself and how I see the world I can cope better with these situations.  I no longer need anyone else to validate my sense of self and have worked very hard to make sense of who I am.  Therefore, I can let their words pass straight through me, only occasionally, when significant, do I pluck their words out of the air and hold on to them.  

You can only help them understand, they’ve actually got to want to.  If they don’t you can only accept that too.  I believe there is only so much you can or even should do to help others understand, they’ve got to meet you half way.  You on the other hand, have to learn to accept yourself fully, for no one else can do it for you.  

You are amazing, you just might not know it, yet! 

© Paul C Siebenthal Dec 2012.

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When my character was still developing, I had not yet formed the coping mechanism I would soon rely on as an adult when over whelmed or upset; namely, going into ‘Stand-by’ mode.  A state in which I turn inwards, go quiet but eventually my processors cool, I reboot and then can carry on.  It was not always so.

A new follower on twitter expressed concerns about her son’s temper.  I offered to write a short post about what he may be feeling and why he could be reacting as he is.

In order to explain what at times may seem unexplainable it helps to understand a few basic things about growing up ‘Wired Differently’.  When you describe what growing up on the spectrum is like, it makes ‘melt-downs’ and anger slightly more understandable in young people on the spectrum.  

For the first few years of my life I was able to live in a quiet world.  The world of home, of familiarity.  My bedroom was exactly as I needed it to be, the people who came into my life were people I knew, people I expected to see.  The noises I heard and the food I ate were what I expected.  I wore the clothes that I liked and which felt good against my skin.  When things deviated from this norm I would act as though the world was ending.  My reaction would seem so extreme, so over the top, so spoilt and angry it would dumbfound those around me as they watched this child go berserk because something was moved or had changed.  I would hit another child at nursery for approaching me.  I’d pick up a rock in the playground and chase a child down and throw it at them with all my strength because they had moved my toy car from the painted line on which it was traveling.  There were so many things and so many times that my reaction would seem extreme.  When I was 6 it was 1980.  Kids like me were just not understood, our behaviors rung no alarm bells, we were just called naughty, were just bad children.

On my first day at school I wasn’t even meant to be going.  We were actually taking my sister to her first day at a new school.  On arrival the headmaster asked my mum how old I was, my mum told him and he took my hand and said, ‘he can come too then!’  That was my first day.  It sounds incredible now but that’s what happened.  Needless to say, school was tough for me.  School for me was about coping.  Managing fear, managing stress and managing people.  

At the back of the class on the alphabet animal wall was a clock made by Smiths.  A large round clock with a long second hand, a second hand that seemed too thin for its length.  With each tick, each tok the end of the second hand shuddered, as did I with the sound it made, a sound which only I appeared to hear.  This combined with the noise of the chalk on the board, the smell of the poster paint.  The metal chair legs, whose rubber ends were long worn away by bored children’s fidgets, scraped along the floor.  All of this made it almost impossible for me to follow what teacher was saying.  I could tell from the letters on the board and the work on my peers desks that we were at this very moment practicing writing letters.  I on the other hand, was just trying to cope with being there.

Factor in; the meaningless facial expressions of your peers and the teacher, the strange things they say, like ‘you need to pull your socks up young man’ or ‘when I get home I can’t wait to watch the football, its going to be blinding!’  So, there you are trying to cope with all this but how do you cope?  How do you manage?  You start to focus in on the things that you can control.  You develop routines, ways of doing things that allow you this brief window of feeling that things are ok, that you may even have some control.  You line up your pens on your desk. You wear the same clothes, every day.  You eat your food in order and only the foods that you can texturally cope with. 

You focus in on the things you can do.  You can’t cope with the school lesson but you know things, you remember things, and these make you feel better.  So you try and tell people what you know, but its not what they were talking about and they get annoyed with you.  You find it hard to take on board the kind words of those who care for you because what they say doesn’t make any sense either.  They talk about things getting better, improving in time but you don’t work like that.  There is no future in your world view, just a now!  You don’t imagine the future, you find no solace in this magical place, this future ‘never never land’.  You are just you, here, now and you’re frightened.  Stressed and lonely, your way of needing to do things; your routines, your knowledge and interests literally mean everything to you.  They feel like they’re all you have and when even these are taken away, changed, stopped, then to you, it feels like a matter of life and death.  Your very existence is at stake and so your reaction reflects that.  That is why we meltdown, shutdown, go into stand-by or even lose our temper.  Yet we keep on trying, keep on learning, trying again and again to cope with this mind blowing world in which we find ourselves. 

© Paul C Siebenthal Nov 2012.

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I was recently asked to write a blog post about advice to Aspies thinking of starting a relationship or to someone starting a relationship with someone with Aspergers.  This post is written from my perspective as a man on the spectrum.  I have only ever been in relationships with women who are not on the spectrum.  I am sure that there are many similarities between female Aspie, male NT relationships and Aspie & Aspie relationships but those similarities are for others to extrapolate.  I shall just be giving my insights based on my own relationship experiences.  

I claim no special expertise in the area of relationships, as anyone who has been in a relationship with me will attest, other than an ability to describe my experiences in the hope that these will be of use to others.

I have tried on several occasions to start this post but hadn’t found a way to give it the time needed as I feel that there are many issues to discuss.  I have therefore decided to write this post in several parts, one part a week, possibly more depending on time.  With feedback and further requests of areas to discuss I hope to write several more parts in addition to the four listed below.  

Part 1: There is always a beginning; thoughts on starting and developing a relationship. 

Part 2: Really getting to know someone; thoughts on sharing and differences.  

Part 3: The penny drops; thoughts on understanding Asperger’s better in a relationship.  

Part 4: Then she touched me; thoughts on intimacy, physical affection and touch.

There is always a beginning; thoughts on starting and developing a relationship.

You only have to listen to anyone talking about the subject to learn that all human relationships are difficult and close personal relationships are often more so.  I’ve heard many male Aspies on twitter express concerns about how to meet a women or how to cross the first hurdle of even talking to a member of the fairer sex.  This post is not going to be about my ideas of attracting a mate.  However, I have several observations about my own experiences that may be helpful or a least reassuring.

There are many potential partners out there, there being, in society.  Half the population, unless you’re reading this in rural India or China are female.  This means that there isn’t a shortage of possible partners.  The main issue is often meeting someone, again there is some good news.  In my experience the type of partner that I would want to date isn’t someone who is going to be hanging around pubs or clubs.  She is also the kind of person that wouldn’t respond to, or be impressed by, blatant attempts to, ‘chat her up’.  Also she isn’t the type of person interested in one night stands or flings.  Therefore, the group of women that I would be interested in are quite a self selecting group.  Many women seem very tired of the usual macho posturing and overly assertive approach that many chaps seem to think is the way forward.  I’ve developed my relationships and friendships with women by just being myself.

I know that this is a strange idea and one that makes many men looking for a partner worried.  What if they don’t like me?  Well, we can only be ourselves!  With our interests, our sense of humour, our everything.  Believe it or not, many women out there like our way of seeing the world.  Many do prefer bookshops to discos, sci-fi to chick lit.  Prefer many of the traits that Aspies have as default settings.  Yes, there are problems and difficulties in being with an Aspie as there are for Aspies having to cope with Non-Aspies and their funny ways.  But as I have all ready said, all relationships are tough, all require work and effort.  The key is to remember that we only stay in relationships or start a relationship with someone because our life is better with them, than without.  Fundamentally it is that simple.  We develop relationships because we want to be with a person that adds something to our life, we don’t need to be who we are not, as we are enough.  If we are not enough, then we are not with the right person.  Yes, we have to learn to be flexible, learn to adapt, learn the give and take.  There is no other way.  If we are not willing to do that or we’re being asked to do that too much and in doing so, losing ourselves, being asked to be someone we are not, then this really isn’t the relationship for us. 

In my personal experience, nothing is as challenging or as rewarding as having a relationship.  It is through these relationships we learn who we are and what we want in life.  These aren’t always easy things to learn but they are part of the fabric of relationships.  We often meet our greatest teachers in the people we spend our lives with.  

I have heard it said several times on twitter, “my Aspie husband or partner does this, or that, what can I do?”  I have heard stories, which are basically of verbal abuse, aggression, and harassment being explained as being part of living with someone with Asperger’s.  As I said to them, having Asperger’s doesn’t excuse behavior like that, it wouldn’t excuse it from anyone and nor should it.  You could argue that it explains it but ultimately it is the responsibility of both parties to moderate their behavior, wants and desires enough that it makes for a relationship that both people want to be in.  If not, it will end.  If either party in a relationship, treat the other badly, unfairly, disrespectfully then it will likely end.  Having Asperger’s or living with someone with Asperger’s doesn’t excuse treating the other poorly, that’s a character issue not a autism one!

© Paul C Siebenthal Nov 2012.

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There are times when I’m forced through powers way beyond my control to change my routines and well worn paths of reassuring repetition.  When these changes and events happen there is a moment when I feel as though everything, in the widest sense, is ruined.  There I was, thinking that everything was as it should be, when suddenly I am expected to change my routine, my well worn path.  The initial feeling is physical, like when you go over a bump in a car at speed and for a split second your stomach remains where the rest of you has just been.  At the same time, just before I am able to have a word with myself and talk myself down, a mental switch is pulled.  The world that was at one moment light, bright, illuminated and clear is at once, dark, absent and full of fear.  Polistically switched, everything is now upside down, the wrong way up, inside out.  Gradually though, my snow-globe brain clears enough for me to see the switch and sometimes, if I’m able, I can turn the light back on.  For only then can I begin to see those new paths and routines that will make everything, in the widest sense, alright again.

© Paul C Siebenthal Nov 2012

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There is something terrible in that feeling when the realisation hits.  First you check your pockets, then the door, then your pockets again just in case lint has metamorphosed magically into your door keys.  Then because you still can’t quite believe it you try the door again.  All of this happens in a matter of a few seconds until finally you accept your reality.  You have locked yourself out.  Then the magnitude of your predicament sinks in.  Your phone’s indoors, with your wallet and ID.  Your landlady is away, not that you have her number, it’s indoors!

When the above last happened to me I ended up walking 2 miles into town to the local locksmith, who then told me he couldn’t help but had a number of an mobile emergency locksmith who could.  I phoned and left a message.  Several hours later he arrived.  By this time I was just pleased to see him but was more than a little conflicted when he told me that to have access to my own home I was going to have to pay him £75.00!  I felt powerless and so I paid.  He walked up to my door, removed from his tool box a thin square of plastic, slid said plastic down the side of the door and frame until it was level with the locking mechanism.  Then with a deft wiggle of the card and a little pressure on the door, hey presto, the door opened.  It took him literally 5 seconds, about the same time it took me to write his cheque.  I couldn’t believe what I’d just seen.

This was how my most recent obsession started, by paying someone £75.00 to open my door with a piece of plastic.  I had to learn how to do this, I had to learn what this man knew.  So, I read and read all I could get on the Internet about lock-picking and locks.  I bought a book and a set of picks.  I bought a set of training locks, I bought some pad-locks, I even bought some special plastic squares just like the locksmith used and I practiced and I practiced.  For about a month, locks and lock picking was all I could think of.  I’d dream about locks, talk about locks, think about locks.  While watching the TV I’d have a padlock in one hand and picks in the other.  Gently lifting each pin of the lock whilst applying the gentlest pressure until hearing that satisfying click of the lock popping open.

As with many of my obsessions I had to learn everything I could up to a point that was practical.  I learnt how to open standard cylinder locks and pin locks and how to open my door as quickly as the locksmith.  I learnt all about tension wrenches, picks and rakes.  I learnt all I could right up to the limit of what I felt I needed to.  I stopped at mortice locks and knew that unless I was actually going to train as a locksmith I had learnt enough and with that the spell was broken and I resumed my normal interests.  I do however, still carry a small lock picking set with me and regularly leave my keys at home so I’ll have to pick my way back in.  

I never know when the next obsession will happen but during that time, for as long as it takes, I’ll learn everything I can until I’ve learnt enough.  It has always been this way and I’m sure it always will be and I for one hope it doesn’t stop, because this is one of the best things about being an Aspie.  When we apply ourselves to something that interests us we can achieve a great deal, often much more than many think possible.  

© Paul C Siebenthal Oct 2012.

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In sleepy Dorset when boarding public transport, something I rarely do, I often say an encouraging good morning to the driver, because in my case at least, familiarity has not quite yet bred contempt. Even the Dorset bus drivers respond in kind and seem as best I can tell to mean it. This morning getting on a bus on Ealing Broadway in London, I was full of the joys of a bright autumnal day and said my usual Dorset good morning to the bus driver but, by the expression on his face you’d be forgiven for thinking I’d written the words across his windscreen in my own poo, such was the look of contempt he gave me. Not a great start I thought but at least the bus route is outside and you can see the sky. Unlike the strange world of the London Underground. Clearly, compared to my experienced commuting companions I am out of my depth both metaphorically and literally. In Dorset, except for the odd road tunnel we tend not to travel underground. I was stood on the platform, having walked down some very steep stairs into the earth, when the strangest thing happened. There I was, minding my own business, when all of a sudden this strange subterranean gale started and then a tube train appeared. Now, I’m not stupid, I understand the physics. The train acts like a huge hypodermic injecting the stench of London around the veins of the underground. It’s just so horrible but looking around me, much to my dismay, no one else appears to think so. They’re all busy pretending that there’s actually no one else on the train. It would appear that there’s a strange game going on and I haven’t been told to the rules. From the little I can gather the main rule is that under no circumstances are you allowed to meet the gaze of any of your travel companions for fear of receiving what is clearly an expression which even to me, is meant to communicate something quite significant, namely: F**k OFF! The bus driver it would seem was not a freak occurrence and probably wasn’t just having a bad day. This is clearly how one is expected to behave when travelling in the big city. I do understand the fact that there are just too many people in your everyday commute to engage with and so it’s easier to put your headphones on and pretend you’re travelling alone and in your own little bubble. Pretty soon I know I will learn their ways and perhaps if I were here for a time, I’d even become one of them. I hope though, if I were to spot a newbie trying to find their way, trying to make eye contact, trying to make a connection with someone in this strange and scary place. I just hope I can meet their gaze and maybe even, manage a smile.

© Paul C Siebenthal Oct 2012.

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[“A polar bear walks into a bar, I’ll have a gin and……………tonic. The barman asks…”.]

A friend once discussed with me my telephone technique.  She said that she regularly counted to see how long it would be until I spoke if she didn’t.  Eventually, just like the barman she asked, “……why the long pause?”  She said she could never let it go on too long, because it made her feel funny, whatever that means.  I personally don’t notice the pause, I’m quiet because at that point I have nothing to say.  I’ve had to use a phone for work and I’ve learnt that in certain circumstances one must try to fill the gaps, but when I’m tired or just being myself, I struggle to do so.  I guess it comes down to a kind of reciprocity.  There appears to be an unspoken rule (which is a little ironic!) that states you’ve both entered into a two way movement of words, which must be spoken with a degree of regularity, that will mean at no point, will either wonder where the other has gone and therefore create, that terrible of terribles, something often referred to, as an ‘atmosphere’.  I just don’t have that thought, need or awareness.  Not innately.  I have to remember to try and do it.  

I also forget not to say how I’m actually feeling, or rather, I make no attempt to pretend I’m feeling other than how I am.  It’s such hard work and unless I’m really trying not blow my cover and consciously, with a lot of effort, be someone or something I’m not, I just don’t, or rarely can, perhaps won’t.  It’s just not me.

As with the polar bear, why the long pause?  Well, we’re just born like that!

© Paul C Siebenthal Sept 2012.

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Some of us in society have to go through the process of having an ‘expert’ question and assess them in order to select from an encyclopedia of disorders one that most applies.  Then have bestowed upon them a label by which the rest of society can know them hence forth.  More importantly, a label through which they can know themselves.  Perhaps luckily, perhaps not, there are sufficient of us that industries get built around our needs and society often appears to sigh a big arhhh, as more and more of us go through this process.  We’re often left trying to make sense of who we are now we have gained our label.  Who was I before I was labeled autistic?  Before I was labeled dyslexic?  The list could go on.  

These labels have huge connotations for us personally and for those close to us, as we all struggle to understand what they mean and how other people, with other labels, will come to know us and each other.

Perhaps in time society will move on from the need to categorise others in terms of perceived weakness or disorder.  Perhaps the greatest sign that I have come to accept myself will be when I no longer subscribe to these labels.  In time……..perhaps.

© Paul C Siebenthal Sept 2012.

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Everything is quite black ‘n’ white to me, all or nothing, yes or no.  Ironically, it was this type of thinking, which although clinically significant, delayed me seeking a diagnosis of Asperger’s.  

When I was studying to become a psychiatric nurse I was looking at a book in the university library on child psychology.  Turning the pages I saw the diagnostic criteria for Asperger’s.  As I read on I could see myself in many ways but because of my black ‘n’ white thinking, I struggled to realise that I could have Asperger’s, even if the things I read didn’t apply 100% to me.  During that time at university, whenever I read about Asperger’s and particularly biographies of other Aspie’s, because their stories were different to my own, I dismissed the possibility.  In fact, even after my first diagnosis I couldn’t make sense of the grey areas in my own presentation.  It took a second assessment and diagnosis for me to understand the subtlety and individuality of Asperger’s. This aspect of my own presentation actually stopped me from seeing my own Aspieness.

This style of thinking does have benefits too.  When I decide to apply myself to something I do so fully.  If I want to learn something I won’t just learn a little, I’ll need to reach a level of understanding that I am happy with before I can move on.  It’s always been this way but as I get older I have developed the wisdom to learn that sometimes its best for me not to start something if I’m not able, for lack the time, information or even funds, to apply myself to the degree I know I’ll need to in order to satisfy this all or nothing aspect to my nature.

This goes for blog posts too.  I am still working on a post based on a question I received on twitter this week.  I’ll need to work on it until I’m happy it’s ready to be posted.  I can’t do it any other way. 

© Paul C Siebenthal Sept 2012.

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