Two: ‘neurotypical.’
This simply means anyone who has NOT got an autism spectrum ‘condition.’
‘People with Aspergers/autism experience things differently
often having trouble making sense of the world around them. I always think it’s
like the neurotypical sees 1+1=2 and the autistic sees 1+1=3. Our problems are
not always recognised, people expecting us to be just like them because they
can’t see our disability or difference. But really this is like expecting
someone with dyslexia to suddenly be able to read and write like someone who hasn’t
got dyslexia!’
Over the years since my diagnosis I have written many notes
on what it is like for me to have Aspergers. This is a compilation of those
notes. Now I need to stress a number of things. First, I am NOT trying to speak
for everyone on the autistic spectrum. We must realise everyone on the spectrum
is different and has their own personalities and opinions, therefore be careful
not to generalise. Likewise, every neurotypical person is also different and
has their own personalities and views. Second, these are very much my personal
experiences and views, although I suspect many on the spectrum will identify
with much of what I say. Third, I hope to give the reader, particularly the
neurotypical reader an insight in what it is like to have Aspergers.
I know there has already been a great deal written and
published already on autism and Aspergers and it is maybe difficult to add
anything new and inevitably a lot of what I say will be similar to what others
have already said or written. But it is such a complex and puzzling condition
and often difficult to explain or describe. People might say to me what’s it
like having Aspergers? This is not at all easy to answer. It can’t really be
summed up in one sentence. But I know there are times when I can describe it
accurately and clearly so that is when I write stuff down. At other times even
I can’t really explain it.
Inevitably there is a lot of repetition in the notes I’ve
written because the same themes and difficulties keep constantly coming up.
These are if you like the core difficulties and problems of the condition.
I thought it might be helpful to first list the main
characteristics of Apergers from a leaflet produced by The National Autistic
Society called ‘What is Asperger syndrome?’
Difficulty with social communication
Difficulty with social interaction
Difficulty with social imagination
Love of routines
Special interests
Sensory difficulties
In addition to these I’d like to add two more features and
they are a different way of thinking and dyspraxia. I and others on the
spectrum do tend to think in a different way and experience the world in a
different way to the average neurotypical person. Dyspraxia is a name given to
difficulty with co-ordination that I sometimes have and that some people with
Aspergers have.
I have decided to put my notes under the above headings with
an added section on how I’d like to be treated by others and finally a section
on ‘other notes.’
NOTES
Difficulty with
social communication, interaction and imagination
I have much anxiety when thinking of certain situations. One
of these being when I am in a social situation of dancing to music and a woman
comes over and starts dancing with me (this actually happened at a hotel
disco). This is way out of my ‘comfort zone’ and I couldn’t handle it ‘coz I
didn’t know how to due to lack of experience.
So common sense says why would I put myself in these
situations that I know will cause me considerable discomfort and anxiety? It is
human to avoid the things we know we will not enjoy. It is bordering on a
phobia and naturally we avoid our fears and phobias, even though we know the
only way to overcome them is to face them (easier said than done).
The only way I can see of me dealing with this problem is to
be gradually ‘introduced’ to the situation mentioned with someone there to
support me as well as me having some ‘social skills’ training. These two things
together would help as then I could gain experience and therefore confidence.
I often end up isolated and lonely. Difficult to be with
people, make and maintain friendships. Terrible feelings of missing out on
basic human contact/interaction. When I’m with people who interact so well and
naturally, feel so different to them, so OUTSIDE of them and their world.
Desperately want to be a part of their group but don’t know how to. Unsure how
to join in with them. Simply don’t know ‘how’ to be with people. This is the
REAL disability with the Aspergers. Get depressed knowing there is no easy
answer and fear of always being this way. There are of course times when I
simply don’t want to be with people and I like to be in my own space, but I am
NOT happy being on my own all the time. I want to be with others but due to the
anxiety and distress it causes I avoid it. Rather like someone who has
agoraphobia, they want to go out but don’t due to the anxiety they feel when
they try to go out.
Often when I tell people of my problems and difficulties I
think they have an impulse to give me advice or ‘lecture’ me. NO – not really
what I want to hear! Like if I say I’m lonely they might say why don’t you do
this or have you thought of that?
Example – ME I get
lonely
PERSON
Why don’t you join an adult education class. You could do something
you’re interested in and meet people.
GOSH, I never thought
of that (sarcasm).
Look, I know they mean well but if they really want to help
me then take notice of what I’m saying in these notes. Just try to take on
board the stuff I am saying here OK.
This is something that actually happened to me. I met some
friends in a bar one of which was a good friend of mine. Three others including
two women joined us. I felt uncomfortable and ‘not like them’ as they were
chatting and interacting in a natural way. There was some envy and a feeling
that this is what I crave and feeling I’m missing out on. I felt sad and close
to tears. At times it was unbearable for me. Sensory problems were there that
included an excessive self-consciousness. We then went to the Chinese restaurant
next door for a meal. Fortunately they sat us in a secluded area away from the
crowded restaurant. I felt more at ease and had a beer to relax me. I started
to chat a bit to the others but maybe revealed a little too much saying I had
problems socialising and was on meds etc. But I still felt envy and a feeling
of this is what I am missing in life – a group of friends I can feel
comfortable with and socialise with. I felt that they seem to like me including
the two women. It was suggested that we go to a pub afterwards. I was not keen
but went anyway. The pub was crowded and I said to my friend ‘I can’t handle
it’ and said goodbye to her and left feeling pretty lousy. Actually I think I
got a glimpse of what it could be like in a social situation and how potentially
it could be enjoyable. Ironically this made me feel depressed, something about
will I ever achieve this?
When I got home I reflected at what had happened. I felt
sad, a failure that I can’t deal with these social situations yet I crave them
at times. Then there is the fact I have no girlfriend. I would like a
relationship not just for sex but also the companionship and someone who I can
love as I can be quite a loving, caring person.
I feel I need to explain the social imagination problem a
little. I find people confusing and unpredictable. I have trouble working out
what other people know and guessing what they are thinking. It’s difficult to
‘read’ people to the point of understanding or interpreting their thoughts,
feelings and actions. Subtle messages put across by facial expression and body
language are often missed. It’s like having a sort of ‘social dyslexia.’ Sometimes trying to understand them is like
trying to understand a foreign language such is the different rhythm they talk
in, like talking to the beat of a different drum if that makes sense, or ‘dancing
to a different tune.’
Relationships
For me to have a relationship with a woman she has to tick a
lot of boxes.
1) I
have to feel comfortable with her
2) She
should be fairly extrovert (not shy)
3) She
has to understand me and my Aspergers and how I need lots of time on my own, my
own space and that I’m not like most other (neurotypical) guys. This is perhaps
the hardest thing for her to understand.
Above assumes she is interested me in the first place.
Basically I want a relationship on my terms which sounds selfish but it is the
only way.
Looks are not that important nor is age. There is of course
the possibility of having a relationship with a woman who has Aspergers. This
could work in theory but may bring its’ own problems.
Even if I do find someone the possibility of living with her
would be very difficult as the thought of living with anyone is difficult if
not impossible for me. The getting married thing and having a family is fairly alien
to me. I’ve sort of largely given up trying to have a relationship because of
the difficulties involved. That’s not to say it’s impossible and may well
happen in the future.
Trying to understand
neurotypicals
I’ve largely given up on trying to understand neurotypicals.
For years I tried to study them, even be like them but it is like fighting a
losing battle. Sometimes when I am with neurotypicals, I can ‘go along with
them’, mimic them and put on an act because at times it may be necessary. But
it’s often so demanding I end up drained by it all. But live and let live and I
just let them get on with their way of living which will continue to baffle me
and I will go on with my way of living. I can’t really compete with
neurotypicals and will only do so if it’s a ‘healthy’ competition by which I
mean one that is good for me and that inspires and influences me. You may feel
I am creating an ‘us and them’ situation but I don’t want it to be this way
even though like it or not to some extent it is.
Love of routines
In my flat everything has to be exactly in its place.
Anxiety and stress can result in having to move things. I have OCD (obsessive
compulsive disorder) symptoms and problems that are now thought to be part of
the Aspergers. I have an obsessive need for control and order. If my routines
are disrupted I can get very anxious. Change can cause considerable stress. I
tend to do things in a specific and ‘exact’ way, like a ritual. I also have
many persistent unwanted intrusive thoughts that are nearly always anxiety-
provoking. An example of this is a health anxiety obsession.
I often avoid housework etc because it causes considerable
anxiety.
This is an example of my obsessive routine. I went on
holiday recently and it caused considerable anxiety as I had to plan everything
in my head and go over and over it to make sure of doing it right. This
included what I would do once at the airport and all one has to go through from
the check-in to boarding the plane. Then what I will do when I get to the other
end and the check-in at the hotel. Then what I will do when I’m there including
meticulous planning of what I intend to do each day. If one thing were to go
wrong such as getting stuck in traffic on the way to the airport or a delay in
the plane taking off this would cause much anxiety. As it happened everything
went OK but that did not stop me having severe anxiety on the day I was due to
go. This anxiety only subsided when I was at last on the plane. By the way my
anxiety has nothing to do with a fear of flying which I do not have.
Special interests
Special interests are a common feature of those on the
spectrum. I have several. One is music. I have an enormous knowledge of music
and have heard of thousands of artists. It comes from studying obsessively
about music from many books, radio, TV, magazines etc. It’s something I can
talk very easily about. But there is a danger in it becoming such a big part of
my life to the exclusion of many other things. I feel it is sometimes the ONLY
thing in my life. It’s sad but music and my other interests are sometimes the
only thing I can relate to.
Sensory difficulties
I’m trying to think of a way to describe the sensory
problems. Imagine going out into freezing cold weather in just shorts. You
would feel very uncomfortable to the point of it being unbearable. Well this is
what it’s like for me with the sensory difficulties. Also it’s like having a
very thin layer of skin. It’s something about being exposed, with little
protection, everything feeling raw.
I get what is called sensory overload quite a lot. When, for
example I’m in a busy town and all becomes too much, the people, noise and just
too much activity I then need to retreat to a quiet place, e.g. home away from
the stimulus. It’s like I can’t think very well when I get overloaded and when
I’m back in the quiet I can think better. It’s like a re-charging of the
batteries. Other things that cause me discomfort are extremes of temperature,
light, especially bright sunlight and noise. These things can often contribute
to sensory overload as I am ultra-sensitive to them.
Being ultra-sensitive I find any discomfort very hard to
tolerate. Whereas I’m assuming for a neurotypical person
discomfort is easier to tolerate,
perhaps just being an irritation.
A different way of
thinking
I hope this goes some way to understanding what it is like
for me to have a different way of thinking. Please read it in a non-judgemental
way.
I don’t THINK like you.
I don’t SEE THINGS like you.
I don’t INTERACT like you.
I experience the world DIFFERNTLY to you.
The above is a REALITY, a FACT so don’t argue with it. It is
NOT helpful to hear things like ‘you’re labelling yourself’ and ‘you’re putting
yourself down’ and ‘why do you have to think so negative?’ and worst of all ‘we
all see things differently.’ Don’t patronise me as these sorts of comments are
‘trivialising’ my disability. Just acknowledge the above and the fact I have a
DISABILTY and have DIFFICULTIES.
I want you as a white English person to imagine going to
live in a small town or village in China where no-one speaks English. How would
you feel? I’m guessing you’d feel pretty alienated, isolated and out of place.
Well this is what it’s like for me much of the time having the Aspergers. And because no-one speaks English you would
find it hard to communicate and interact with them which is again what I have
difficulty with. In a sense you would be in a ‘different reality’ which is what
I feel I am in.
The ‘culture’ thing is interesting. I think having Aspergers
is like coming from a different culture. We are not so alien as to come from a
different planet but a different culture. Yes, an Asperger culture if you will.
Here is an example of a different way of thinking that may
occur.
WOMAN When I lived in
Bristol I met a guy who I lived with for a while. But he was violent and beat
me up a few times.
AVERAGE NEUROTYPICAL (NT) PERSON Oh my God that’s awful!
But me or another person with Aspergers might say:’ How long
did you live in Bristol?’
You see the two ways of thinking between the NT and the
Aperger person. This is just an example of course but there is definitely
differences in the way we think and the way an NT thinks.
This may come under a different way of thinking or
dyspraxia. It is something Uta Frith mentioned and that is we don’t seem to
have our own built-in sat nav or GPS system like most neurotypicals seem to
have. They seem to automatically and instinctively know where they’re going
without having to think too much about it. Whereas for me and others on the
spectrum we have to kind of work hard to find our own navigation system. I’m
not talking necessarily about finding our way from A to B but more a navigation
through life and the complex society we live in. I hope this makes sense. But
this can lead to dyspraxia-like problems in that I sometimes have poor
awareness of where my body is and have trouble negotiating my way through
crowds.
This is something I wrote a while ago.
‘Hello! I come from
the planet Asperger and am living on your planet Earth amongst the Earthlings
also known as neurotypicals. I am known as an aspie and am a different species
to you but we have some things in common. But your ways often baffle me, your
strange rules and your way of interacting. Alas I fear I will never understand
you. Will you ever understand me? I fear not also.’
Another example of a
different way of thinking
Neurotypicals tend to think in Way A. People with Aspergers tend
to think in Way B. It is near impossible for Way A thinkers to think in Way B
and also near impossible for Way B thinkers to think in Way A. It’s like being
left-handed (people on the spectrum) and right-handed (neurotypicals). People
who are left-handed find it very difficult to do things with their right hand
and vice versa.
Example of a
misunderstanding
At work I was eating some chips in the Post Room where I
work. The receptionist walked in and saw me eating the chips. She then went out
to where the others in the office were and said ‘He’s eating chips in there.’
Now I interpreted this as though she was disapproving of me eating chips, but
in reality it was unlikely to be this and more likely to be just a harmless
comment. An average NT person would I imagine see it as this and may even reply
in a way that ‘goes along with the comment’ perhaps in a jokey style way? These
sort of situations happen quite frequently with me and can lead to
misunderstandings and ruminating on ‘what did she mean by that?’ type thinking.
It can even lead to a mild paranoia with me thinking people don’t like me!
Talking of work when someone wants me to do a task for them
they have to give me crystal clear instructions on what they want me to do
otherwise I won’t understand as ambiguity confuses me and is something I can’t
deal with. Also I often have trouble processing information and it often takes
me longer than it would with the average person.
Dyspraxia
Dyspraxia is a condition that involves lack of or poor
co-ordination. It has been described as a difficulty in planning complex
movements. I have problems with co-ordination sometimes, particularly when
under stress. For example I can’t multi-task or concentrate on more than one
thing at a time. There are times when my co-ordination is so poor that I’m
liable to make mistakes and appear clumsy even dropping or breaking things. I
get overloaded easily. I’m trying to think of an example, like when at work
once I had to carry various bits and pieces to a store cupboard. There was so
much stuff stacked in there that I couldn’t figure out where to put all the
stuff I was carrying.
Another thing that I find difficult is photocopying several
different items. I’m generally OK with one thing but several is difficult. It
is difficult co-ordinating all the copies and keeping them in order, keeping
track of where I’m up to.
How I want to be seen
by others and how I want to be treated by others
As a person with a disability that often causes difficulties
that affect and disable me in various ways. These ways can sometimes be subtle,
sometimes more obvious. For example if I
get sensory overload I get sensory overload. If I can’t temporarily process
information then I can’t. If I have problems with co-ordination then I have
problems with co-ordination. I can’t help this but I manage it the best I can.
It’s like someone who has learning difficulties, they can’t help this so I
can’t help having Aspergers. But I want to be treated the same as everyone else
but with an acknowledgement that I have
a disability and to make certain ‘allowances’ for this like you would with
someone let’s say who has a learning disability. I don’t want special treatment
and I don’t want all my behaviour or all I might say to be put down to my Aspergers.
Sometimes things may be due to the Aspergers, sometimes not.
I want Aspergers to be recognised as a REAL and GENUINE
disability which is what it is. It is a disability like any other, although I’m
aware that not everyone wants Aspergers to be seen as a disability but more as
a difference. I do not choose to have Aspergers, I was born with it.
Other notes
I’m sure many people are aware of ‘The Big Bang Theory,’ a
US comedy show. There is a character in it called Sheldon and he is clearly
supposed to have Aspergers’ Syndrome although they don’t say as much in the
programme. I can really identify with Sheldon even though his traits are
clearly exaggerated for comic affect. People in the show see Sheldon as ‘weird’
as they are basically neurotypical, although Sheldons’ ‘girlfriend’ Amy is also
likely to have Aspergers. It is also a very funny show.
There was an episode of ‘The Big Bang Theory’ where two
characters called Penny and Raj emerge from a bedroom and Penny says to the
others as she carries her shoes, ‘It’s not what it looks like’ and Sheldon says
‘What does it look like?’ This is an admittedly extreme example of Sheldon, who
knows everything about physics not being able to ‘read’ a simple situation that
any NT person would immediately be able to ‘get’ i.e. that Penny and Raj must
have slept together. It shows how someone on the spectrum, in this case
Sheldon, can be brilliant in one area yet know little or nothing in the area of
human relationships and the ability to be able to read given situations.
Following on from
this, I may know loads about music but I know little of life or how to live it?
I haven’t got that much experience. A lot of it is alien to me. Take soaps,
they are mostly about the neurotypical world with NT characters. Soaps don’t
really interest me. I’d much sooner watch documentaries.
Having Aspergers is like being in a race with only one leg.
The neurotypical has two legs and is always going to beat me. I can’t compete.
I could have a crutch that would help a bit (support for Aspergers) or it is
possible I could have the type of artificial leg that disabled athletes have to
allow them to run and compete (a lot of support and help for the Aspergers).
This is an example of how I can over-think things often.
When a feeling or emotion comes up, there is often a ‘multiple choice’ question
in my head, like what do I do? Tick Box A), Box B) or Box C) as a
response. Whereas the average
neorotypical gets the emotion and instinctively feels and expresses it such as
sadness results in crying. Do you understand what I’m saying here?
Having Aspergers is like grieving for the person you are
never going to be.
Having Aspergers is in many ways being like a child in that
like children we don’t know many basic things and almost want someone there to
guide and instruct us, especially when it comes to the unwritten ‘rules’ and
etiquette around interacting with people. Of course I am an adult and have
years of knowledge and experience that a child can’t possibly have, but there
is still a child-like naivety around people, what to say and what not to say or
do etc. And like a child I want to ask lots of questions around this because I
am often unsure due to both lack of experience with people and my Asperger bit
of simply not being able to ‘read’ situations and facial expressions and all
the other ‘disabling’ things about having an autism spectrum condition.
Often the most difficult thing for me is the ‘smalltalk’ or
‘chit-chat’ that neurotypicals do so well. This is fairly alien to me and I
really struggle with it. It seems to come automatically and instinctively with
many people and has a natural ‘back and forth’ rhythm. I just often feel
completely stuck for something to say leading to awkward silences.
I want to mention I suffer much anxiety and depression that
I think is not uncommon with those on the spectrum. Now obviously depression
and anxiety make anything worse and it’s no different with the Aspergers.
Symptoms and characteristics of Aspergers are intensified by depression and stress/anxiety.
I’m aware I’ve used the term neurotypical (NT) rather a lot
in my notes but it just seems a convenient way to describe people who haven’t
got autism or Aspergers.
I’m aware also of Simon Baron-Cohen’s theory that there is a
general spectrum and virtually everyone is somewhere on this. Most people are
in the middle of it, i.e. they may have SOME autistic traits but those who have
Aspergers or autism tend to be more at the extreme end of the spectrum and have
ALL the main traits and also have them more severely and intensely.
I’m uncomfortable a lot of the time, uncomfortable with
people, myself, being me and just uncomfortable in my own skin really.
I do sometimes tend to blame everything on my Aspergers when
perhaps it is other things. I think actually a lot of my problems are largely
to do with my mood and depression. But I try not to use the Aspergers as an
excuse but a REASON. It is a REASON and an explanation for many things about
me, why I’m like I am etc. Being naturally obsessive I also have to be careful
NOT to get too obsessed with the term Aspergers and indeed Aspergers itself and
remember I am still me, still a person.
Aspergers is generally an ‘invisible’ disability. But if you
were to take me (or someone else with Aspergers) and place me in a neurotypical
situation with neurotypical people, then it would I think become apparent
fairly quickly that I was different and would probably stick out like the proverbial
‘sore thumb.’ An example where this is
sure to happen is if I were to go on a ‘stag night’ with some neurotypical
guys. I hasten to add that this situation would be very uncomfortable for me
and is therefore something I’m liable never to do.
The way neurotypicals talk and the way people with Aspergers
talk is often like two different languages. They may well be both in English
but they are different. Different in subjects talked about, rhythms of speech
and ability to be flexible (NT’s generally able to be more flexible than those
on the spectrum), responses, reactions, expressions of language and indeed facial
expressions and responses. It really is two different ways of communicating.
Sometimes Asperger conversation can seem rather mechanical, stilted, one-sided.
I’ve already mentioned difficulty reading facial expressions.
Well I and a lot of others with Aspergers have difficulty SHOWING our own
facial expressions often having the same unchanging expression on our face, or
what may be called a ‘poker-face.’ This is perhaps a more overlooked part of
having an autism spectrum condition but is frustrating to me as I simply don’t
know how to do facial expressions. It’s like the feelings are there (although
not always) but I can’t transmit them to my face so that it must seem I am
quite ‘wooden.’
A version of the square peg in the round hole. I will
continue to be any shaped peg I want and if it doesn’t fit in the nice round
hole that YOU have created, then so be it! I am NOT like most other people and
what’s more I DON’T want to be like them! Even if I did want to be like them I
couldn’t.
I am NOT trying to be different, I just AM different
(although I admit part of me likes to be different sometimes).
