Information for family members

tinkerbell423

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Dec 27, 2006
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I feel overwhelmed today! DS was diagnosed with aspergers about a year ago. We shared the diagnosis with his grandparents and Aunts and Uncles. In the span of the year only my mother has taken it upon herself to learn about aspergers and MIL who's a RN with a Phychology background insists he's fine, everyone else seems confused when I mention something about aspergers. I am trying to find a way to compose a short one page description of aspergers to give the rest of the family a basic understanding of where he is coming from. Does anyone have any suggestions on how I can begin?
 
I feel overwhelmed today! DS was diagnosed with aspergers about a year ago. We shared the diagnosis with his grandparents and Aunts and Uncles. In the span of the year only my mother has taken it upon herself to learn about aspergers and MIL who's a RN with a Phychology background insists he's fine, everyone else seems confused when I mention something about aspergers. I am trying to find a way to compose a short one page description of aspergers to give the rest of the family a basic understanding of where he is coming from. Does anyone have any suggestions on how I can begin?

I am sure there are a lot of people here who can point you better than I can on the hard information you want but I wanted to give my view point on it as someone who once thought he had it.

In short a lot of people and even doctors seem to not understand it and want to write it off. To be honest I am not sure I have it or not but everyone pulls out their diagnostic book and sort of goes "huh" when I mention it.

Its just one of those things that to others may seem normal until it confronts them. People with Aspergers are usually very smart and as such a lot of people want to think that unless you have 100% all the time visible signs, you do not have an illness that can cause problems. The main thing I remember is, if there are verbal development issues growing up (I think I worded that right) then Aspergers is ruled out because its more of the ability to read and react impairment.

A lot of those who are able to express theirself in some form about their illness, and were diagnosed with Aspergers say its not that they do not FEEL emotions, they just cannot find a proper way to express them. Since they have issues reading social and non verbal queues they may not know they NEED to and thus come off as rude/cold/crude.

I have seen it becoming more noticed and acknowledged in 2010 but it still had a road to go for those who just do not understand. Having a doctorate in the area of psychology does not mean they can understand every mental handicap or illness or impairment. Sometimes they tend to BLOCK OUT stuff unless it was not taught to them during school. Its sort of an adaptive block and looked at as "phooey" as one doctor I know called it.

To find my information I just went to Google and typed it in and read what it showed me. I tend to find more information in people's comments they post than the write ups because its in their OWN perspective (or their loved ones, saw a LOT of wives/girlfriends etc).
 
While I understand your need to 'educate' your family about Asperger's Syndrome, it would help your child more if you educated your family on what his needs are, in order to help him adapt and grow. The diagnosis is really not the important part of it at all - learning how to read social cues, how to react in all kinds of situations, what is acceptable behavior, etc - that's what your family can work on to help your son.

So sure, give them a brief, layman's definition of Asperger's Syndrome. But also give them responses for your son when he is not understanding their social cues, show them how they can help your son with some controlled experiences so that he can figure out some rules that he can use in other, less controlled situations.

For example, when family comes to visit, have them greet your son and expect an appropriate reply. Role playing is a great way to work through some basic scenarios, and the family should be a good place to start.

Now, for those that say 'he's fine' - well, I'd be grateful that they accepted him for who he is, that they don't see him as a child with a disability, just as himself, and they are fine with it! Of course, they can still help with his development!
 
Here is a real basic "page"

bookwormde

The science of understanding Aspergers and the related Autism gene set is a complex area of developmental and evolutionary science which is advancing every day. As best it is understood today, the gene set is a multigenerational evolutionary branch in the human genome which gives individuals differentials in their abilities some of which are great gifts and some of which create significant challenges. The gene set appears to follow though lineages back to the beginning of recorded history and pieces of the set appear to exist in almost all lineages. Many individual have a small number of the characteristics of the gene set, but are able to adapt to this limited challenge by adapting for these "quirks" and often benefit from the "gifts" that are part of the gene set. When an individual has a major portion of the gene set the differential abilities it often rises to the level of a disability when tying to interface with typical societal structures and expectations. Individuals with below average intelligence and who have other cognitive and developmental challenges the presentation is that of classic Autism. For individuals with above average intelligence the presentation is that of Aspergers or as a Aspie (sub clinical) depending on how much the individual is able to self adapt and mimic intellectually the skills and abilities which are expected by typical society.

There are 3 major areas which present differentials with the Autism gene set. Lack of innate social skills is typically the most prominent feature. The general population (neurotypicals NT) have a major portion of the brain genetically dedicated to the process of learning, reading and interacting within the complex and often unfamiliar social contexts that have developed as part of Homosapien society, these areas and processes do not exist in individual with Apsergers and abilities(skills) in these area have to learned and practiced intellectually. It is very difficult for nuerotypcial individuals to perceive and accept this difference since by their genetics this an unconscious developmental process which they assume all individual have. Even for those who are Aspergers or Aspies with highly developed intellectual innate social skills mimicking abilities, a large amount of intellectual effort must be expended in unfamiliar social situation which can lead to exhaustion and anxiety.

The second areas is sensory differentials. These can be both heightened or depressed sensory sensitivities. For those with heightened senses the overload can case serious chronic sensory overload and the associated damaging anxiety and atypical reactions. For some these heightened sensory capabilities when understood and managed can be gifts such as exceptional perception and differentiation in the area of sight, tone, touch, smell, taste as well as combined perceptual abilities. While there is some self adaption for this area, primarily accommodations to lessen the impact of the sensory overload are the most common adaptive methodology to function in typical society.

The third and least understood is the area of (EF) Executive Function, which in the simplest terms is the way the brain takes in, processes, organizes, creates new ideas and outputs information to the world. For NT society and structure this is done by means of linear processing where information is perceived, discriminated (a decisions made as to what is important and what can be discarded), linearly organized based on prior experience and bias and new ideas are created from this subset of organized information and are outputted based on social acceptability and standards. For individuals who are Apergers or Aspies the process is completely different and actually has similarities to the way the NTs process social information. Information is taken in non linear format (the simplest version is visual) and stored on mass without discrimination, and new ideas are likewise developed without linear process (often when asked how an answer was arrive at the description of "I just knew it" is used). Output is often without social filtering which occurs with NT communication. There is a level of linear process that exists, but the non linear methodology often takes precedent so enhancing the linear skill in needed to function in structures which are predicated on linear process such as school and most work. Also adapting the environment to a more non linear format is beneficial. This different EF ability is the great gift of individuals with Autism genetic as it is now understood that the vast majority of creative advancement that have allowed civilization to progress have come from these individuals.

This is just a basic overview of a very complex science. For more information on Aspergers reading the primary text by Tony Attwood "The complete guide to Aspergers" will provide the next level of knowledge about the typical presentations (although every individual is unique) and Genius Genes by Michael Fitzgerald and Brendan O'Brian provides a view of the contributions of the gentics. Both are available on Amazon for under $25
 

Here is a real basic "page"

bookwormde

Wow - this was excellent to read. Very, very informative. Honestly, I may be an Aspie myself. Each of the three areas you discussed rang so many bells for me.
 





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