Taboo Topics: Living with Disabilities/Special Needs – Intro

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[…] There are too many impulses in the brain in one area which results in this dysfunction occurring. The results of this dysfunction means that in a person with Asperger”s syndrome there is heightened sensitivity for the senses. This could be sound, light, touch, taste and smell. This would manifest in the way that if there are too many loud noises the body gets physically exhausted and needs to recover. This is one of the minor impairments. The other ones are that there is a major social impairment (this means that generally most social cues are missed and not stored in the brain) eye contact, body posture and facial expressions look forced. Another is that there is a lack of seeking enjoyment of things with other people and lack of the appropriate social reactions to those of other people. The other set of symptoms are that Asperger’s people generally have obsessions with a few specific topics, inflexibility with rituals that have no purpose, repetitive body movements like hand or finger flapping and a preoccupation with parts of objects. The reason that I am explaining this in so much detail is also in fact a part of been an “Aspie”. Been honest about things in a sometimes inappropriate manner is also one of those traits. I needed to explain all of this first to put my story in context. Aspergers is an “invisible” disorder because you can only see when someone is socially inept when you start to talk to them and then you don’t really want to connect with them because they don’t reciprecate in the conversation as “normal” people would and they constantly go on about one subject. I was only diagnosed with Aspergers about four years ago. When I was growing up in art class and at school all of these traits resulted in me not having many friends at school or even at church. I found it very hard to fit and I also felt very “subjectless” in normal small talk situations as that didn’t interest me much unless they were talking about something that I was interested in. This of course did not happen very often. Sometimes I would also just get angry at people and that of course is a sure fire way to push people away. As a result of this I had few real friends in school and was left out of sleepovers and all the normal stuff that kids do together when growing up. Lack of social skills when the world is a social environment is a huge impairment. I was involved in a ministry a few years back and because I didn’t communicate the message that God gave to some people through me “in the right way” they asked me not to pray for people anymore as I was not socially appropriate. Eventually, I was asked to leave the ministry group because of the behaviour patterns that I had which were not clearly understood by the members of the group. In my normal church environment where “small talk” is a very necessary skill (one which aspies are not that good at and don’t really want to be good at) this a real challenge. I have always found it hard to know what to talk about at church during coffee and to have short conversations that don’t really mean anything. This means that it has been especially hard to form meaningful friendships as they begin with the small talk conversations and very often I don’t really have anything to talk about either. Think of Asperger’s as the person having not been sent the book on “social norms” and ways of doing relationships. Things like when to change the subject from an awkward one, to simple things like it’s time to leave someone’s house because everyone else has left. It has been a struggle for me to make friends because of this impairment and I have to work twice as hard to be included in things because of this. Usually I am not included as my behaviour is classified as strange to the “neuro-typical” type people. I have been bullied and teased and left out of general activities because of the social awkwardness and this has resulted in a very low self-esteem for me with regards to people and specifically to romantic relationships as well as I can’t tell and don’t know the social dance in that either. I was often left out at school and even in my study years. Because of my lack of social understanding this meant that climbing any kind of work “relationship” ladder to get ahead was not possible. I worked in many different sections in many different jobs and usually because I was not good and am not good at expressing my feelings, I didn’t get further in those positions. Stress also affects me badly so that also contributed to things. In the church and work environment I have struggled to connect with people and sometimes I have nothing to say so that means that the relationship doesn’t go further because I am not even sure what I should be saying, small talk bores me and sometimes I can do it, but it’s hard to. I either talk about some contraversial topic that no-one wants to discuss or some random general knowledge on one of my many pet topics. This of course makes it hard to connect when everyone else is pretending and keeping to social norms in conversations! Suffice to say that makes things even more of a challenge. What someone could do is take some time to get to know me for me. The friends that I do have do make an effort but church events that are wider are hard to manage sometimes for me. Where others were always invited out socially, I generally was not (with the exception of my one friend in the church at one time who always made me feel welcome). Weekends away with intimate and close friends never happened because forming those type of relationships is very difficult for me as sometimes I would over share and scare people away and then not share at all. The skill that other people have of knowing the difference between the two, I just don’t have, hence general relationship skills are missing resulting in a lot of heart ache from being left out of events and other things because the relationship was not deep enough and I had no roadmap to know how to get it to that level. One thing about Asperger’s people that is unsettling for the “non-Aspie” is that we tend to be honest about things that in the social norm most people do not appreciate or would not dare talk about. (Eg. salary) Some ways that would help others to make the Asperger’s person feel more welcome (remembering that this is something you can’t really see in “normal”social interactions unless you look carefully or actually ask!) is get to know me for me. You could also find out about my special interests and talk about that and then guide me in the conversation to your special interests. I am naive in some things but that doesn’t mean that I am a child. Patronizing me is not helpful. I do not read non-verbal cues very well and can’t always understand how you are feeling unless you tell me. My maturity can be masked until you get to know me. When rules of engagement (as in social engagement) seem not be understood by us (or me) it would be very helpful for them to be made known very clearly and consistently. Many times I miss the rules of the game that everyone seems to know instinctively. An example would be when its time to leave. A random statement of “I have things to get done tomorrow.” is just that to me – a statement of fact and does not necessarily compute in my mind to “You need to leave now with the other people.” Trust is also hard as I have been hurt many times by people in authority and people on the same level as me. Emotionally I feel things deeply. If you don’t pre-judge me and get to know me, it will be easier for me to believe that I can trust you. My motives are also not clear sometimes and this is where you can ask me and I will be honest with you. (Other NT people you might not ask that question to). Generally speaking most Aspies are also honest about things (even our salaries) and will talk about some topics as a normal course of events (though the “rules” say you can’t) We can also be anxious and that stops us from making eye contact. Answering questions in a literal way is also one of the ways we communicate, so if you ask if someone looks strange and we think so – we will say, “Yes!”. We won’t know if we’ve hurt you so you need to tell us if this is the case. Sometimes we also don’t know when we are invading your personal space, so again also tell us if this is the case (as we won’t have any idea unless you do!) If you just move away from us and we don’t why, it would be helpful to explain why. It’s also easier if you explain the detail first and then the big picture in a logical way, some abstract ideas are difficult to grasp some of the time. Please also don’t use social constructs in an explanation but rather define something in a logical and factual way. I also verify and clarify things often (it may seem redundant) but it helps me to understand and it helps the person I am speaking to understand as well. Interpreting someone’s intent is also very hard to do. Understanding is also key as we are all different – so trying to understand where I’m coming from and me trying to understand you will also go a long way in bridging the gap. Calling people by names like someone being “difficult” or “retarded” is not very helpful (no-one likes being labeled no matter who they are). This will cause anxiety and when we/ I get anxious this would make it more difficult to communicate. Freedom for everyone to be themselves without judgement is a very important thing and I find that even people in the church are quick to judge and make an excuse to leave someone out of their special group. This needs to change as we are all a part of a family no matter what the people in the family look like. We are all different and just because someone’s behaviour is different does not mean they are less of God’s creation. So I encourage you, if someone looks like they are struggling in a social situation and look alone, go up to them and start a conversation, you never know, your life could change! [For other stories from inspirational people who happen to be living with disabilities or have speci… […]

[…] of my blog i invited a group of friends to share some stories they are living with regards to disability. This week i was asked if i could share this post highlighting some of what has been taking place […]

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