In a small group of people, when there’s a degree of banter going on and jokes are being made at each others expense, I can see it happening and join in with the best of them.  There is something about the group that makes it easier to decode the humour.  The group reaction and laughter gives a cue to how things are to be taken and understood. The group dynamic speaks loudly to me and I feel able to keep track and not take offence.  In-fact, the biggest issue for me is often staying within the boundaries of social decency and appropriateness and not over-stepping the line that seems so clear to others but is often invisible to me.

The area I still struggle with is when joking with someone, one-to-one.  It is then, with no-one else around to reassure me or to take my cue from, that I can still find it hard not to take offence.  When combined with the fact that although I know when I’m joking and much to other people’s annoyance, I think I’m hilarious, I can often take offence when the tables are turned because I miss the joke.  Despite all the previous banter; the laughing, the non-verbal cues, the facial expressions, and the nod and a wink of it all, I can still miss the fact you are joking.  A situation that is uncomfortable for the person being funny and for me, because it stops the conversation in its tracks and leaves you open to the much heard accusation, ‘well, you can certainly give it, but you can’t take it!’ or the well used, ‘can’t you take a joke?’  I really can take a joke, honest.  I just often struggle to know when it is actually a joke.  Therefore one-to-one, sometimes, just ain’t that funny!

© Paul C Siebenthal March 2014

A summary of a talk given by Paul C Siebenthal (@Aspienaut)

Dorset Adult Asperger’s Support (DAAS)

18th Feb 2014

Bournemouth University, Dorset

Summary by Diane Waters (DAAS) Secretary 

We were very pleased to welcome Paul Siebenthal, a service user who was previously a psychiatric nurse, and who is currently lead peer specialist at Dorset Mental Health Forum. Paul spoke to us as someone on the spectrum who also has a good insight into mental health and shared his own experiences and opinions. He was diagnosed with Asperger’s twice, once at age 25 and again aged 37.  65% of people on  the  autistic spectrum have a secondary mental health issue, very much higher than the general population. There are several reasons why this may be the case. The main issues are mood disorders and anxiety and Paul discussed both these, as well as identifying some different conditions which are often misdiagnosed and over represented. Adults with AS, especially if they are undiagnosed may get caught up in the psychiatric system and perhaps mistreated for other conditions such as schizophrenia or bi-polar. Unfortunately some professionals lack insight and misunderstand or have prejudices about autistic spectrum conditions.

Paul spoke about his  own situation how he struggled with depression and anxiety for most of his life. In fact he is surprised to meet anyone on the spectrum who hasn’t experienced these conditions, although there are some. Speaking for himself Paul believes that a sense of isolation when growing up, struggling to make sense of a world everyone else seemed to understand, not being able to make sense of facial expressions and social niceties, contributed to his feelings. There was no  reciprocity or exchange of understanding to give reassurance and relieve the isolation. Other people’s kind words can be hard to receive especially if they are looking to the future. But it can be difficult for someone on the spectrum to imagine themselves in the future in a different or better situation. It requires a sort of mental gymnastics which people not on the spectrum can do and find helpful. Schools seem to use this approach but it is a struggle to take on their kind words. Mood disorders can be over diagnosed because AS people don’t give a lot away about themselves;they don’t have expressive communication when other ask if they are OK, so people ask themselves “what’s wrong?”

Paul spoke about Alexithymia, which is the inability to make sense of emotions and feelings, so that others may recognise when someone is sad or angry or happy but the person himself cant identify the feeling. He finds that because he seems unresponsive or monosyllabic sometimes, concentrating just on what is going on in his own head, people think there is something wrong and so treat him differently. This can lead to misunderstandings and accusations of being rude or discounting or not caring. So a sense of separateness or isolation can arise. Without the benefit of a diagnosis and support & help to understand what is going on its not surprising those with AS can feel alone. Paul then looked at some classic misunderstandings about anxiety and depression. Depression can be an overused term but in clinical depression there is an overwhelming feeling that life is pointless, there is very little pleasure, no self-care or care for others. This is a very serious condition which can require treatment whether or not someone is on the spectrum. It shouldnt be accepted as just an inevitable consequence of having AS. No-one should be expected to live their life with such a low, sad, disjointed mood. Anxiety often goes hand in hand with depression and both can exacerbate each other. Paul finds depression slows down his thinking and brain power whereas anxiety stimulates it. People can misunderstand reactions to anxiety and to sensory issues. They can be seen as psychotic symptoms.  For many people anxiety can manifest itself in the need to do certain things to allay the feeling. There can be mis-understanding about reactions to anxiety such as the need  for routines and  specia interests which are interpreted as OCD. Paul talked about a routine he has to separate his food when eating, which is a way of exercising control when other aspects of life might seem uncontrollable. Anxiety causes reliance on routines and the routines provide an anchor of reassurance. Routines are very important to many people on the spectrum and a change in routine can be very unsettling and produce great anxiety that may seem out of proportion. These reactions may be seen as OCD, and some people on the spectrum do have OCD as well, but the causes are different. In Obsessive Compulsive Disorder the routines and behaviours serve a secondary purpose; they become compulsive because of the fear that something bad will happen if they arent followed. This is fundamentally different from having special interests and routines which relate to control.

Paul believes another common example where a psychiatric disorder is sometimes confused with an autistic spectrum condition is in the diagnosis of personality disorders and the use of the term psychopathy (especially in America). Someone with a personality disorder has a rigid form of thinking and behaviours created from childhood, often a difficult or abusive childhood. They grow up creating an inner world to help them cope and this often means disassociating themselves from their own and from others emotions. They seem to carry out inhuman, uncaring acts. Psychopaths as a rule have a great ability to read peoples facial expressions and to manipulate people to get their emotional needs met so they may become very successful in their chosen fields eg business, criminality etc. But autistic people really struggle to read facial expressions. There is a huge misunderstanding in the idea that people on the spectrum lack empathy when what may be part of the problem is not being able to “mind read” from someones facial expression. People with borderline personality disorders are often quite impulsive, reactionary and emotionally over the top. This can also be mistaken for autism. Similarly with bi-polar disorder and Paul cited an occasion when he had become very excited and unable to sleep over a period of days about a new interest and what he considered to be amazing discoveries. This had been seen as manic and similar behaviour in others could be misdiagnosed and lead to medication or hospitalisation, especially as there is an inability to switch off and focus.

Sensory aspects of being on the spectrum can be difficult to verbalise and to make sense of. People with AS may talk aloud to themselves and may say that they can hear several things going on at the same time when they cant filter out information from background sounds. If this cant be expressed in a way that a doctor can understand it may be misinterpreted as auditory hallucinations.

In summary Paul said that people on the spectrum do get misunderstood and mislabelled sometimes because they are more highly sensitive than other people or conversely because they can be impervious to things that others notice. The medical profession may be looking for a mental health diagnosis when what is really needed is a better understanding of the persons autism.

The meeting was opened up to a general discussion about the issues raised. Some of the points mentioned included:

  • Empathy, or the perceived lack of it in AS people, is one of the most mis-understood things. There are two main definitions:- an emotional response; or an understanding based on what people are thinking. People with AS have difficulty with the 2nd  one but can have an emotional reaction to what they see or hear about.
  • No caring could be a result of Alexithymia. But signs of being stresse are an emotional response and could be a result of caring but not recognising it. People with AS may recognise they are experiencing an emotion but not be able to define it.
  • Anyone on the spectrum can suffer from any mental illness as well as their autism. its as statistically likely but mor complex for the professionals to treat and there can be a misdiagnosis.
  • The  best  wa to help someone is by acceptance and understanding. Its easy to say but difficult to put into practice.
  • Having the label” of a diagnosis may make it easier for friends and family to understand but care needs to be taken about where the information comes from and a degree of flexibility interpreting the label may be necessary. There can be a conflict of understanding between the professional and the person on the spectrum. Everyone needs to be treated as an individual not just in accordance with a label.
  • One member emphasised that knowledge and understanding are no the same and this may be apparent in the way some professionals interpret the diagnosis.
  • A lot of issues can arise from self-medication and addiction.
  • Sometimes people are divided into categories according to the organisation treating them, and services are provided not for the person as a whole but for their addiction, their mental health or their autism, without allowances for any overlap.
  • There can be misunderstandings about the nature of violence associated with autism, particularly in children, and also in connection with risk assessment for insurance purposes.
  • Some people can hide  behind their diagnosis and expect society to conform to their needs and wishes and it can be hard to learn the consequences of poor behaviour, to take responsibility and not use autism as an excuse.

We were very grateful to Paul for his insightful and informative talk. People with AS were able to identify with his accounts of his own experiences and carers/supporters gained a new understanding. Paul can be found on Twitter @Aspienaut and has a blog at http://aspienaut.tumblr.com

Diane Waters © Dorset Adult Asperger’s Support 

http://www.dorsetadultaspergerssupport.org.uk

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Growing up I spent so many hours worrying, thinking about all the terrible things that could happen, may happen, surely will happen. The accidents, the car crashes, cancer and aids; nuclear war, riots and floods. The news was full of such things and the news readers always spoke in absolutes, with photographic and video evidence to back their statements.

As a child I couldn’t believe I would live to be a teenager, let alone the forty year old man writing this. It took me many years of reading and learning about all the subjects that scared me before I could really make sense of the true risks I faced. That meant I had some very dark preoccupations growing up. These dark things, like all things that I don’t understand, often become the topics of study and obsession while I struggle to make sense of the world. I notice a concern in this behaviour in parents and teachers of youngsters on the spectrum. These children are often judged and stigmatised for trying to understand the darker sides of life. Often, without such interests, much science, medicine and social policy wouldn’t move forward as those of us who have such interests and focus, fight to better understand such risks and how to manage them for the betterment of everyone.

I for one can see how being on the spectrum could aid such work rather than exacerbate it. In part I suspect it was this view growing up that eventually led to me working in health care and now in a mental health charity. Both roles utilising much that I have learnt about the more difficult and challenging aspects of living in today’s society and the struggles many of us have for lots of different reasons. Knowledge and truth more often challenges fear, but rarely creates it.

© Paul C Siebenthal Jan 2014

There is one constant pastime that I have engaged in for the last 20 yrs which I realise now serves a greater purpose than I first thought. I have spent and still spend a large proportion of my free time frequenting cafés and restaurants. I can think of no finer way to spend a morning (as I am doing as I write this) drinking coffee, reading a book or the paper; writing and thinking, watching the world go by.

For me, I realise now, it serves another important purpose. It allows me to be social, be amongst people, importantly it allows me to be in a situation that has rules and social guidelines that are easy for me to follow. Sometimes I get to meet people I know to share the experience but unlike some of my friends, I’m as happy to spend time in these places on my own as I am with company. Having one other person join you is ideal, anymore and you start to lose the whole purpose and value of the endeavour, as the usual social issues start to build. I’ve written a great deal in these places and with earphones and music for when it gets particularly loud, I feel I’ve found a safe place in the social world.

© Paul C Siebenthal Jan 2014

When my son is 20 I will be 60. When he is 40, I will most likely be dead.  This and much more besides occur to me as I sit here thinking about the coming year and the one just gone.  Thoughts of life, love and loss swim around my mind as suddenly my stomach feels like it does when you go over a bump in a car at speed and for the briefest of moments you seem to have left your stomach in the same place the rest of your body has just been.  

Yet the the days are lengthening, if only slightly and my son can now sit upright and reach out for my hand.  Birds flock to food I leave in the empty garden and their colour amazes me.  Life at this moment is tough but astounding; difficult and beautiful.  Lonely yet connected, this moment is perfect and could be no other way.

© Paul C Siebenthal Dec 2013

I’ve been thinking a lot recently about how I perceive events and lay down memory.  I’m aware that I see my life as a series of individual moments and memories that are boxed up, disconnected and independent of each other.  I do not think of my experiences or life as a narrative or experiential arc; rather a series of disconnected random events.

This is reflected in how I write.  I have no sense of my auto-biographical pieces being connected in anyway other than, that I am in them.  When I think to write something, it only occurs to me to write a specific event or recollection within a distinct period of time.  There is nothing leading on from one piece to the next.  There is no flow between events.  No lessons learned and taken forward because I can’t imagine a future.  It is also why I find no solace in the concept of, ‘tomorrow things will be better.’  I have no mental construct through which I can project my imagined self into this imagined future.  There is just today, just this moment, now.

© Paul C Siebenthal Nov 2013.

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Around the table everyone seems able to focus, or least look like they’re focusing. I look around the table at them all watching the speaker talking to the conference about changes within the National Health Service, important changes. I hear it all but struggle to actually listen to what is being said.
More than the presenter, more than the words and the message; I am preoccupied with the sensory issues that drip into my awareness like an audio/visual water torture.
The art in the room is bright and vivid; screams to be looked at and is not hung straight. The degree to which each degree off level bothers me seems valid and at the same time slightly unhinged. The venue’s branded writing paper contains a typography that includes a capital ‘J’ with no looping tail, making it look like a large ‘i’ as it includes the dot yet no tail. The rest of the typography, which is used through out the venue, on walls, menus, pens etc is in keeping as a standard font. It is just the J that is different. I cannot work out the purpose and its use appears completely arbitrary. Yet again the degree to which this bothers me is unsettling. These things are aside from the usual fluorescent light, power-point, microphone and speaker sound system issues. The off putting muttering of delegates discussing the speakers words in real time. To me these voices are as significant as the speaker and almost makes me feel like I’m drowning in sensory stimulus.
So I do my things: I rub my feet together, flick my index finger against the next. Gently rock, close my eyes, clench my teeth and get through. I get through this thing that my team mates seem to enjoy, seem to follow and find encouragement from. I do this and yet feel so lost and alone. So stuck in my own head, unable to be free to just listen to what is being said. So it goes and has always gone and will always be, for this is my world and I am - Wired Differently.

© Paul C Siebenthal Sept 2013

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I find it difficult at the moment thinking about anything other than my son, Noah. It’s as though all past interests, preoccupations and even traumas have been pushed aside, replaced with a new sense of perspective. In a Father Ted* type way, many things just seem small, others are now far away.

*Father Ted: great priest based sitcom.

Father Ted: ‘Small’ vs ‘Far Away’ http://www.youtube.com/watch?v=vh5kZ4uIUC0&sns=tw via @youtube

© Paul C Siebenthal June 2013

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I sat with my father and held his hand as he died and learned about death. I watched my son’s birth and learned a new respect for women and for life. I realise now the degree to which I have removed myself from people and how this can effect us all. I realise now that I have much to do to become a good father and a better person in the world. Life is hard but now feels much more precious than it did before. For this and for much more besides I will be forever thankful for the birth of my son, Noah.
© Paul C Siebenthal June 2013
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