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carolg
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02 Aug 2009, 7:13 pm

I’d like to enter the WP discussion forums to ask for some input from the WP Community on some topics that I feel are important to ongoing support work in relation to AS/NT mixed relationships.

The first is the matter of negative stereotyping that has been raised in the online communities in recent months. I’ve been thinking long and hard about this, and seeking lots of information and opinions from others so that I can understand the bigger picture. Presently I am almost in information overload, but I still feel compelled to reach better clarity on a few matters.

I recognise that there is a lot of terminology being used that is offensive and therefore unhelpful. I also recognise that there are many descriptions of AS around the place that are hurtful, embarrassing and therefore not constructive.

I believe I am learning that it has been difficult for anyone, AS & non-AS included, to find the language to adequately describe their experiences.

All of us are coming from a background of total ignorance about AS until relatively recently in our life experience. Most of the partners I provide support to have been in long-term relationships – 10, 20, 30 and even 40 years. That’s a lot of life lived and a lot of experiences experienced without any awareness of AS.

I recognise that this applies to the partner with AS as well.

Neither partner has understood the other, and neither partner has known how to respond to the other or the situations that arise between them.

Layers and threads of confusion and unresolved issues over many years have created a complex tangle which we are now trying to untangle while people are in crisis.

As an illustration of the tangle, it’s like when you put all your old phone chargers, tool chargers, USB cords and AV leads into a box, rummage around each time you try to find one, do this for 10 or 15 years, and then in an unexpected emergency you have to find the ends and untangle the cords of all the chargers and plugs in order to find the ones you urgently need.

In an effort to describe our experience of AS to an ignorant world, I suspect the tendency has been to use extreme language and extreme examples. Thus we create a pendulum swing from one extreme of no awareness and no language, to the other extreme of building up some very negative stereotypes. I can see that negative stereotypes can potentially be used to create injustice or further harm to a group of people who in many situations have already been misunderstood and disadvantaged.

So, perhaps this is where we find ourselves now. How can we use our present understanding to bring the pendulum back to a position that can do the most good for everyone concerned?

I believe it is necessary and important to provide information that will help people to identify AS in their marriage and family situations, because otherwise they will continue to experience confusion and distress that could have been prevented. I recognise however that it is also important to keep descriptions of AS moderate and helpful so that people with AS will have the courage to acknowledge and embrace their own AS, seek some mentoring and participate in a journey of self-discovery for themselves and re-building for their relationships.

What I would like is to put the following question to you as a panel and ask for your suggestions and feedback:

What language, ie terms, descriptions and definitions of Asperger’s Syndrome have you found useful and realistic in helping you to understand AS for yourself and also to describe or explain AS to others?

Thanking you in anticipation, Carol Grigg, ASPIA.



Bullwinkle
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03 Aug 2009, 3:15 am

Hi Carol, I think you want specific advice but are afraid to give details on your personal situation. Every individual with Autistic/ASP tendencies is just that, an individual. Without any real details, I'd just venture to state that Autism is not a state of being, like having black skin, nor is it a condition, like having a resistance to insulin (Diabetes), its a set of tendencies that, when in sufficient profusion, is clinically called autism. I would argue most everyone is 'autistic', its just a matter of degree.

For example, when I was in high school, I had a teacher who would, when bored, spend much of the class hour pacing the rows of desks, pausing to raise up on the balls of his feet and jingle his keys a few times, then continuing on a bit, then again, then again... Now to many this would be called 'nervous habit', but my experience would call this self-stimming, albeit in a somewhat socially acceptable manner. What constitutes the line between 'being a bit odd' and being 'autistic' is actually the social acceptability of said behavior imo.



zen_mistress
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03 Aug 2009, 3:30 am

Hi Carol,

I am not sure really what your question means. But it is good that you have come here to ask it. Are you after a description of AS? As the above poster said, there are so many presentations of it. Some are shy, some are more outgoing, some are emotionally expressive, some have difficulties describing their emotions and understanding other's emotions, some like technology, others like art or music, and everything in between. Wrongplanet is a loose group of people who can be very different from each other.

Perhaps if you have a look around you will be able to get some ideas about what people are thinking, and you will see how different everyone is. If you are looking do define how Aspergers people are in romantic relationships, you will also have a hard time defining anything, as there can be all sorts of different behaviours and tendencies in relationships.


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carolg
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04 Aug 2009, 2:29 am

Thank you Bullwinkle and zen_mistress.

I have been reading many of the topics and comments on WP for about the last 4 months.

I have been quite moved by the honesty of many who contribute. I marvel at the insight that many of the younger ones have into their own AS. Many who are older have great wisdom from their years of experience. I am learning an enormous amount.

One thing I have noticed is just how different everyone is. It has been very interesting and enlightening for me to see this, and an extremely valuable experience for me to hear what many of you are saying through the written word; things that may be difficult to glean during face-to-face interaction.

The problem I face now is that I have become a bit overwhelmed. Instead of finding clearer descriptions, it has become more varied. The academic descriptions require mental gymnastics to decipher, so I thought it could be more helpful to ask those who actually know what AS is and feels like because they live it 24/7. Non-AS partners can only talk about what they experience as a partner of someone with AS, and many partners are still in the very early stages of their journey of understanding.

Understanding AS and the underlying differences and difficulties is proving to be making a positive difference in many of the marital situations I am aware of and I would like to be able to assist this process of understanding more effectively.

As a starting point, what I want to know is how to define the general underlying core characteristics and differences involved in AS, but in terms that ordinary people (NT & AS) can relate to better.

An example would be, if you were designing a leaflet about AS for people in the general population to help them recognise AS either in themselves or in a family member, what would you list or include in the leaflet? Similar to a summary.

A great deal of literature about Asperger's Syndrome has been written by non-AS people, and in some cases there has been a tendency to build up a negative stereotype. Because this negative stereotype only describes some extreme examples and situations, it is grossly unjust for all people with AS to be labelled or described by this negative stereotype.

I would like to be able to include constructive descriptions in my support work, rather than contributing further to any negative stereotyping that could potentially be damaging to the self-esteem or opportunities of people with AS.

Carol Grigg