trying to do it

hi merlin,
ok how about this.

today have hard to think well.
the brain is not working well.

but have this.
read it and read it.
it is not complete.
it is what had written long time ago to give to the doctor in kingston who assessed the aspergers there.

these are the writings that have so far.
will fix it up better.
when brain works better.
have tried and tried but keep making it worse.
so left it back the way it was.

please read and say if it is sensible. ok?

so far have this.
it is so far rough copy.'
make rough copy first.
first make rough copy.


here is rough copy.

WHY I THINK ASPERGER SYNDROME DIAGNOSIS FITS ME.

After mine Godchild was diagnosed with Autism, his mother indicated that it seemed to be an appropriate “diagnosis” for me. Upon hearing that began to investigate, and came across a web site that is the basis of this short expose into the life. These ‘diagnostic criteria’ have lifted from that web site, becoming the frame of this essay, and authored the answers on how am affected by these various descriptions.


The new DSM-IV criteria for a diagnosis of Asperger syndrome (AS), with much of the language carrying over from the diagnostic criteria for autism, include the presence of:
Qualitative impairment in social interaction involving some or all of the following:
 impaired use of non-verbal behaviors to regulate social interaction,
 failure to develop age-appropriate peer relationships,
 lack of spontaneous interest in sharing experiences with others,
 and lack of social or emotional reciprocity.

Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities involving:
 preoccupation with one or more stereotyped and restricted pattern of interest,
 inflexible adherence to specific non-functional routines or rituals,
 Stereotyped or repetitive motor mannerisms, or preoccupation with parts of objects.

These behaviors must be sufficient to interfere significantly with social or other areas of functioning

Describing the Triad of Impairments
You should explain why this is relevant to you. AS is characterized by something known as the triad of impairments. People with AS will be affected in some way by each of these impairments. I have given some suggestions below for ways in which you could describe how the triad of impairments relate to you. The autistic spectrum is very broad and two people with the condition may present very differently. No one person will have all the traits but by and large most people with AS will have problems in the following three areas: (have chosen to bold the descriptions which apply to mineself, and give personal reflections detailing some examples)

Section A) Qualitative Impairment in Social Communication/Interaction

 impaired use of non-verbal behaviors to regulate social interaction

People with AS may be very good at basic communication and letting people know what they think and feel. Their difficulties lie in the social aspects of communication. For example:
 They may have difficulty understanding gestures, body language and facial expressions
Personal reflection:
Do not know if there is trouble with this. Am uncertain of mine ability to comprehend body language, yet having never really ‘checked’ if what the perceptions are, versus the intentions, there is no way to tell whether there is any difficulty with this.

 They may not be aware of what is socially appropriate and have difficulty choosing topics to talk about.
Personal reflection:
Never knowing what to talk about leaves one always ‘wanting’ in social situations. To merely ‘look’ from the side as others talk amongst themselves. Never does one then initiate a conversation, for what does one say after “hi”? This poses a problem in ever getting to know anyone unless the other will come and start the conversation, and lead it. Furthermore, it becomes quite obvious to the other person that one is not engaging, except to answer questions, and often the other will find someone else to talk with. This has been the experience in social situations. Am not sure what should be saying, or what should not be saying. Sometimes have been told that it was inappropriate to share some information that had shared with people. The difficulty arises in understanding what is inappropriate and what is not. Choosing what to talk about with people does not seem to be a logical process but rather seems to have some sort of hidden rules which have not come to comprehend.

 failure to develop age-appropriate peer relationships

As a young child tried to sometimes approach other children. Mainly for the purpose of getting something they had, such as a ball. Usually what happened was the other children teased and taunted, chased, pushed, or beat up mineself. There was one child with whom did engage in “play” when was 9 years old. This means she was a girl that had found kicking a soccer ball (had a very strong love for balls) at the soccer field. Would go and follow her, watching the wonderful images displayed by the spinning soccer ball and taking in the sounds she made when she kicked the ball. She tolerated me. She never chased, in fact she completely ignored you. It was wonderful to know that it was safe to follow her when she played with the ball. Never did learn her name, or her age, or who she was, but she was considered a friend. She was the only person who ever was a friend. As a teenager did sometimes follow this boy Carlos. Carlos never was hurtful, mostly ignoring mineself, but occasionally would offer some bits of food he had stolen from the Burger King dumpster. He is the only other person after the soccer girl that was nice and not hurtful. When was 24 years old, was in a psychiatric hospital inpatient and there was a man there who said he would help me find a home to live in. Until then had been a hermit/squatter living in the bushes or where ever could find a place to stay until got kicked out again. This man said he would help to find a real apartment and he wanted to live there with me. Said it was ok. He left the hospital, and taught mineself how to apply for social assistance and get an apartment. This was the man who later wanted to have sex with me and there came our first child. Later another child was born, and this man was quite abusive physically and emotionally. Eventually 4 years later he became the ex-partner. This was what people call a relationship. Did not really understand what was a relationship about it, because we never did anything together, or go any place together, or talk to each other. Sometimes we watched tv at the same time, it was better then him wanting to have sex.

 They may not be socially motivated because they find communication difficult, so they may not have many friends and they may choose not to socialize very much.
Personal reflection:
Due to the above-mentioned problem, I have mostly given up on finding any friends, for the process brings much more heart ache then pleasure. Finding someone to be a friend is an exercise in frustration due to its futility. It is much more practical to not engage in self defeating behaviour such as finding a friend.

Some of these problems can be seen in the way people with AS present themselves. For example classic traits include:

 Difficulty making eye contact.
Personal reflection:
Eye contact is like a fire burning. You fear it is consuming. A fear which involves the intensity of the feeling of being watched, and of being swallowed up inside the other being. Eye contact feels so uncomfortable, that quickly the skin starts to feel like it is on fire, the sounds coming into the ears start to implode in the head, and a light-headedness sweeps over this being. As a child, had avoided eye contact always until the instruction to do so became too severe. Having often been hit if you did not respond appropriately to the demands of “look at me in the eyes!” has taught us to keep eye contact as a sort of a ‘game’. The ‘game’ is to see if one can maintain that contact for a certain amount of numbers being counted quietly inside the head. Then the reward is the respite of being allowed to look away, for a certain amount of numbers counted quietly inside the head. This has worked well, although sometimes it results in having lost what is being talked about, at which point do need to improvise. That improvising would be making “uh-huh” and “ooh” sounds, or nodding the head (as if in agreement to something). Those seem to be sufficient for the other being to not suspect that you have no idea anymore what is being talked about.

 Repetitive speech.
Personal reflection:
This was initially in childhood expressed as repeating single words or phrases other people said. Would repeat things had heard, words that sounded nice, or phrases that had heard on the radio. Would repeat them with the same intonation the other had used, even today speech is best imitated from those around you. That was the childhood pattern, until about the age of ten. Other children would laugh and taunt us probably for that, now that am reflecting on it from the adult perspective (since they laughed and taunted us lots, it never was comprehensible as to why they were doing that but that must have been one the reasons too, because they would sometimes imitate me imitating them). Afterward in life we had learned (somehow-have no idea how) a type of personal repetitiveness. We often end up talking over and over again the same thing we had just said. Perhaps using different words. It is like an obsession, and once we start to say something we need to finish it, no matter how many times we might have said it already. This results in others sometimes telling me to “get to the point”, or “you already said that”, and generally getting frustrated with me. It is like a ritual in a sense, to say the statement/thought to the end once it has been started.

 lack of social or emotional reciprocity.

To tell the truth, am not even aware of what this really means. Have thought about it for a long time, and seems that it eludes mine mind. So cannot even say anything to this part of the questions.

 Difficulties expressing themselves especially when talking about emotions.
Personal reflection:
This is a difficulty that fluctuates in its intensity depending on the situation and the type of feeling that is being expressed. Sometimes there is little difficulty, and other times I am completely unable to speak about intimate things about myself, such as emotions. Often what is the most difficult is the aspect of deciphering what to call emotions, or how to identify them as to which emotion they are. There is difficulty in feeling them. The feelings are very intense, and often overwhelming. It is like the feelings are raw skin being exposed to a slight breeze. The part that we have the most difficulty with is, expressing wants. I end up often going without something so essential as food or water to drink because I am unable to ask for any if am out some place. For some reason it is easier to answer with “yes” and “no” response when someone else asks things like “do you feel hungry?”, “do you feel upset?” etc. Yet to try to say those things without the asking first seems to be impossible. As if there is no understanding what the particular feeling is, and having someone else identify it first helps.

 Anxiety in social situations and resultant nervous tics.
Personal reflection:
This manifests itself (now that mine mind/body an adult) as being unable to talk, in being ‘electively mute’, as being so nervous that will flee the situation, or become completely frozen in one place, sort of catatonic. If am able to leave the situation before things get worse then only feel the anxiety and its symptoms, the hypervigilance, the heart rate and blood pressure increase, the chest pains and the feeling that something is wrong and horribly out of order. The “nervous tics” that we have are fiddling around with the fingers, pulling on the clothes, rubbing parts of the body, or chewing the inside of the mouth. These come about whenever I have to speak to any stranger, such as grocery store clerks even. Then the situation becomes so that the intensity of the anxiety leaves this mind frozen, the body stuck doing some activity like twirling the fingers or chewing lips. The whole environment seems secondary to these experiences and it is then difficult to decipher as to what is important anymore.
Social Understanding
Typical examples of difficulties with social understanding include:

 Difficulties in group situations, such as going to the pub with a group of friends.
Personal reflection:
Group situations terrify me. If there is a group of more then 4-5 people, the anxiety of being around people multiplies exponentially. Although am able to go into the mall, and get lost in the swirling colours all around me and find that soothing. As long as am not engaging, or even noticing that there actually are people around me, then am very satisfied watching all the colours and sounds dance around you. In group situations am unable to concentrate on what to listen to, who to listen to, and it all becomes too much to decipher. In such a case, all sounds start to blend in together, leaving you in a sea of auditory sensations that could become a place for me to get lost in. That type of ‘lost’ also happens when focus on something so much that nothing else exists. Group situations are impossible unless they are controlled, like in a ‘group therapy’ or ‘learning group’ type of setting, where the rules are followed. The rules being a certain order as to who will speak next, the topic of discussion is set, and the noise level is usually very minimal compared to a social group setting. Have a strong aversion for social group settings. Have not been in a place where there is a crowd of people since 1996.

 Finding small talk and chatting very difficult.
Personal reflection:
Chatting is not comprehensible. Why do people talk with each other for no apparent reason? For must there not be a purpose to the conversation? a topic? an examination or investigation of something? ‘small talk’ is a completely illogical endeavor.

 Problems understanding double meanings, for example not knowing when people are teasing you.
Personal reflections:
I lack comprehension of what happens at a cognitive level, or why this brain has such a difficult time trying to understand what it is that is being asked of me.
As an adult there is the ability to cope better with conversation and with ordinary interaction, except when someone uses a joke or puts slang words into their speech. This was particularly so as a child. Today there is the understanding that 'hang around' means 'wait' and that 'out of the picture’ means ‘not here as an active member’. As a youngster though, it was mostly impossible to comprehend what was being said.
Often someone would say something like 'Eat with your mouth closed, Minna’. Words of this nature are very confusing and impossible to respond to. As for the teasing, even in adulthood, others have found a great degree of amusement teasing you, and then watching the reactions that they also find amusing. They will say things to which our response is acute anxiety, and then tell me they were merely ‘kidding’. This has happened when someone has said “you look like death warmed over”, or when a person will pretend to want money for something they did not really want money for by saying “that’ll cost you”, then when ask how much they laugh and say they were kidding. This erodes the confidence in the human race that I so desperately am trying to build.

 Not choosing appropriate topics to talk about.
Personal reflection:
What determines an appropriate topic? This answer eludes me. Am finding that either talk about mineself too much, too intimately, too detailed, (that is the feedback have been given) or else seem to not reveal enough, leaving people thinking am being ‘secretive’ and therefore ‘untrustworthy’ (how that all can be concluded from what one speaks of themselves makes no logical sense, but again, that is the feedback social workers have given). Never knowing which approach to take, either tell them everything am able to think of, about mineself, or the most interesting topics to me (for what else could one talk about except what interests mineself?) or else be very quiet and tell them nothing thus being careful to not cross that invisible line to the realm of “too much”.
 Taking what people say very literally.
Personal reflections:
I take what is said by others very literally. Why do people say things that they do not mean? 'I'll shoot that dog the next time it rips open the garbage' or 'I split myself laughing’. There are many consequences of being so literal in the approach to life. There comes a need for a coping strategy. For a long time was too scared to smile and laugh, because did not want to split open.
I can remember a relative saying 'go make yourself useful.' You know how to make a bowl of oatmeal, but have no idea how to even start to make mineself useful, for what qualifies a person for being useful? Furthermore, when someone suggests an action or idea, for example: 'We could go to Mc Donald's', there is no possibility of it being just a thought or something that may happen. In this mind it will happen. So many times have felt lied to or let down because someone mentioned doing something and then it did not happen. Always taking them literally. There is never any room for any other choice. Not understanding why they would say it, if they don’t mean it, leaves the impression that they are deliberately tricking me.

Imagination
This can be a slightly confusing term. People often assume it means that people with AS are not imaginative in the conventional use of the word, for example, they lack creative abilities. This is not the case and many people with AS are extremely able writers, artists and musicians. Instead lack of imagination in AS can include difficulty imagining alternative outcomes and finding it hard to predict what will happen next. This frequently leads to anxiety. This can present as:
 An obsession with rigid routines and severe distress if routines are disrupted;
Personal reflection:
This is a big part of mine life. The feeling is that rigid routines make life predictable, stable, reliable, ordered properly and comprehensible. There are rules and routines for everything. And the adherence to ‘sameness’ is instrumental in making life livable. Without routines, or the breaking of routines life is chaos driven by anxiety and distress to such a magnitude that you completely have a “fit” (will explain what that means soon). There are complex routines for bedtime, for how the bed is supposed to be even. There are routines in where to travel/drive, what routes to take to get to places. Each place has its own ‘route’ and any deviation from it results in such debilitating anxiety that it soon overwhelms one beyond the coping threshold. There are routines in how everything is organized, where it is placed, in what order, (such as when washing cutlery, they need to be placed in the drying rack in the proper order and they all have to go in their corresponding places in the drying rack.) When something happens, like another person does the dishes, if the items are not placed in their proper places do feel as if cannot touch them, or even look at them without the overwhelm response to appear. When am overwhelmed it manifests itself in our sensory system. The skin becomes hypersensitive, along with the ears and/or eyes (sometimes both sometimes one or the other). There are routines and ways of doing everything and rules for everything. Usually they are rules arising from the way the first one was done. I.e. the first time had seen cutlery being placed to dry, the way they were, becomes the rule. Or the first time had drove to some place becomes the route to take forever. The “fit” that spoke about will describe. It is a state of total and utter frustration, which could make one pull the hair out, bang the head on a wall, scream, run, pace in the halls, yell, or drop anything one is carrying (breakable of not). It is a building up type of a feeling. Starting mild and building up into a larger experience. During the beginning stages of it, there is problems with sensory issues, (hyper or hypo sensitivity) often the skin feeling ‘scratchy’ eyes being blinded by lights, ears being bullied by noise. Then within a minute or two, it all swells into an uncontrollable frustration/rage/fear type of a feeling. I do not know how to explain it better then that. It is also possible to get this type of a reaction quite immediately following a sudden painful noise such as a siren or a fire alarm. But breaking of routines and rules leads to the gradual escalation towards this type of a response. There is a need to create tidy order around mineself, because the environment around is an extension of mineself. Also occupy a huge ‘personal space’ feeling that the whole house is an extension of you, and living with other people is a daily lesson in tolerance. Am also fond of wandering a certain path through the house, and get absorbed into the patterns of carpets in unfamiliar settings. It calms the anxiety feel from being in a new environment. There are other personal rituals that do simply for pleasure in the eyes or ears. This topic one could write about all night. Talking about routines almost is like a routine, if you mention one, such as the bedtime, or the cutlery, you feel compelled to explain them all.
 Problems with making plans for the future, and having difficulties organizing your life;
Personal reflections:
Organizing life? It seems like an impossible task. Unlike organizing the drawers, cupboards, laundry, the rock collections, CD’s, cutlery, or any of the hundreds of things this mind/body likes to organize. Living daily, moment to moment is doable. This problem results in difficulties making or keeping appointments (and that problem sometimes results in loosing out on things, like doctors/etc. whose appointments might miss several times). It seems that if am doing something, can get stuck doing it until something else captivates the attention, and time stands still during those times of captivation. These times can last for days and disruptions for ‘daily living’ tasks such as eating, using the toilet, or engaging with family members become taxing, and an annoyance which is experienced as an infringement into the world you live in.
 Problems with sequencing tasks so that preparing to go out can be difficult because you can't always remember what to take with you.
Personal reflection:
This is exactly what happens. Often it has happened that to go out for ‘errands’ which are to bring me to the bank, and perhaps the grocery store becomes impossible. If I get past the coffee shop (that is the first stop in the ‘ritual’ of ‘going to town’, that is a good day. Often I forget the grocery list, or the banking paper work, and have to make several trips to accomplish what was set out as one trip. Sometimes, instead of forgetting everything at home, carry a bag, and in it all necessary items go, but the problem arises when am find mineself checking the bag, making sure you didn’t forget anything, so often that it takes a very long time to leave the house. Sometimes making you late for appointments. Then if you are late you cannot go inside the office because it is not the right time to go in, but you are also supposed to be in there all ready so not being in there is wrong and therefore results in a “fit”.

Some people with AS over-compensate for this by being extremely meticulous in their planning, and having extensive written or mental checklists. **** this is what am able to do, when have NO outside stress in the daily living, and therefore am able to consult with the brain as to what is needed. Then am able to have lists for everything, consult the lists, and follow them, but only when am left alone, given time to think, in quietness and solitude. This is nearly impossible in a family.


Secondary traits of Asperger syndrome
Besides the triad of impairments, people with AS tend to have difficulties that relate to the triad but are not included within it. These can include: (have made underlines to the things that is me)
 obsessive compulsive behaviours, often these are severe enough to be diagnosed as obsessive compulsive disorder or OCD;
 These can also be linked to obsessive interests in just one topic, for example they might have one subject about which they are extremely knowledgeable which they want to talk about with everyone they meet; *** have gone through many ‘interests’ over the 35 year lifetime with which we have obsessed. Among the interests is a theme of collecting. Either knowledge or information on certain topics/issues and dwelling on them, to the point that would research during every waking moment, forgetting to do much of anything unless someone redirects you. Or the collecting could be objects, such as old used wrapping paper, old magazines, pieces of bark, feathers, pine cones, stones, coins, stamps, (these are all obsessions either have had, or have still). I love the collections, they mean much more then much of anything else. Then when the interest changes, the old obsessions seem to be not so important anymore. Yet still like to keep the old items, just put away in boxes in storage. (have lots in storage!)
 phobias, sometimes people with AS are described as having a social phobia but they may also be affected by other common fears such as claustrophobia and agoraphobia;
 acute anxiety, which can lead to panic attacks and a rigid following of routines;
 depression and social isolation, this is especially common among adults;
 Clumsiness often linked to a condition known as dyspraxia. This includes difficulties with fine motor co-ordination such as difficulties writing neatly as well as problems with gross motor co-ordination such as ungainly movements, tripping and falling a lot and sometimes appearing drunk as a result.
Personal reflections:
Finally, there is the desire for a explanation of sensory issues which affect daily living.
Certainly sensory hypersensitivities exist within this body. Sensory issues sometimes also appear as hypo-sensitivities, where nothing gets in unless it is very loud or “hard” (those are the times when the music is much too loud for others ears, or people accuse me of yelling, when in fact the voice is barely audible). Or as synaesthesia, where one sense is perceived as another; this is what personally refer to as the sensory ‘wiring’ having gotten mixed up or re-routed. One of the ways this presents itself is as pictures of colours appearing in the field of vision as a result of someone or something touching the skin. Or sometimes extreme fluctuations between hypersensitivity or hyposensitivity. Also need to mention the sensory experience which comes from spinning around in circles, it is soothing, like it washes away a ‘backlog’ of nerve impulses which seemed to have no place to go. Scratching of the skin has the same effect, or banging the head against a wall, hence the predisposition for self-injury. These are different reasons for self-injury then the typical explanations.
This mind will record data and encounters like a computer. You remember minute details, but seem to forget things that other people seem to think is very important. Will notice if an object has been moved in a room. The eyes soak in colour. The hearing is highly acute, as is the smell. You explore surroundings with the senses. You have an instinctive ability to feel quiet joy amusing yourself alone. Do have books, which are very dear friends. Have taught mineself to read at a very early age, and have educated mineself with books. In structured classrooms, have learning difficulties. Yet do learn best alone at mine own pace.