Sunday, April 18, 2010

Acceptance: The Sixth Stage of Asperger's Awareness

The transition from darkness to acceptance is one of the least discernible shifts in Asperger’s Awareness. Darkness can be so painful that the subject and his/her family go numb in response. Given the options, numb is better than further harm, but it can slow down the process through to a healthy integration of Asperger’s into all aspect of identity. For some, acceptance is the terminal stage of Asperger’s awareness. It is a reasonable and manageable state of affairs, even if it misses some of the psychological and personal benefits of celebration.

Unlike some of the earlier stages, acceptance is a steady state. The shock of being “other” is balanced with knowledge about what Asperger’s is and how it works. The tension of living in the general population is a known, and the last spasms of darkness mellow into a stable, functioning system. Acceptance is not necessarily positive. It can be tinged with resentment and a permanent sense of bitterness or resignation. Acceptance is better than the alternatives though, precisely because it is predictable and static. The pain and negativity of Asperger’s may be profound, but since they are known quantities, the Aspie and loved ones can build and reinforce coping mechanisms. Not all mechanisms are equally desirable, and surely some Aspies develop dysfunctional patterns, but they are at least stable. In fact, the stability of acceptance is what makes celebration possible and begins to guard against a regression in to darkness.

There is no single JoHari configuration that captures the acceptance stage, but there are several patterns. Unlike the unrestrained disclosure that often accompanies dawn, those in the acceptance stage are more reflective about when and to whom they disclose Asperger’s. They don’t try to hide the syndrome, but they may set boundaries to protect their privacy and ensure appropriate disclosure.

In general, those in the acceptance stage have increased their own self-knowledge. This leads to a large public arena, but may also stimulate a reconsideration of what should remain private. Part of the stability of acceptance is managing the message. Some with Asperger’s develop a short script they can use to identify the syndrome to others.

During acceptance—which may last a lifetime—both Aspies and those who love them experience an uptick in self-esteem. Rather than denigrating their self-identity because of the Asperger’s, they tend to upgrade their description of the syndrome to match the level of personal esteem.

Esteem is a tricky thing in any case, but Aspergers complicates the issue because some of the tools that normally construct our self-concept are missing or low-functioning. Many neurotypicals generate a sense of their self-worth by reading how people respond to them. They track affirmation and correction (usually subtle) and build a self-concept from those inputs. Self-esteem is a dynamic idea, with daily and relational fluctuations. Some situations and people bring us down, and others bring us back up. For a person with Asperger’s, many of the cues and signals that feed the self-esteem machine are inscrutable. Consequently, a person who finally accepts Asperger’s may regress to behaviors that they tried to avoid earlier in the process. For example, an Aspie who learns that wearing a variety of clothing is socially normal might decide, as part of accepting her Asperger’s, to wear what she likes. This could lead to some social distancing—and that might be okay. In acceptance, the level of self-esteem is not typically as high as during ignorance, but it is much more informed. The esteem of one who accepts Asperger’s is much more complex, but that complexity is precisely what makes possible the final stage: celebration.

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More insights from the Asperger's Expert are on the main page.

3 comments:

  1. "...those in the acceptance stage are more reflective about when and to whom they disclose Asperger’s. They don’t try to hide the syndrome, but they may set boundaries to protect their privacy and ensure appropriate disclosure."

    One of the more difficult things in our Asperger's journey has been the matter of disclosure. We seem to meet with one of three responses: either the person doesn't know anything about Aspergers; they agree or they disagree (?!). Whatever the response, people don't seem to have any problem sharing their opinions!

    As a result of the diagnosis, less than a year ago, I am more understanding and completely accepting of my son and his sometimes (often) quirky behaviors. Now the challenge is interacting with other people in such a way that they are hopefully more understanding and accepting, too. It is tricky with friends and family. It is especially challenging in casual interaction with strangers (i.e. the dentist, getting a haircut, etc.). A lot of times people will only see a "bad" kid or bad parenting.

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  2. I agree Sherri, disclosure's a bear.

    In sixth grade, my son wrote a series of statements on note cards and presented them to his class. In case you haven't made it there yet, you can read about it and then see the note cards in these posts:

    http://aspergersexpert.blogspot.com/2009/05/disclosing-aspergers-in-childhood-1.html

    and

    http://aspergersexpert.blogspot.com/2009/05/6th-grader-with-as-advocates-for.html

    Thanks for all your encouraging comments.

    Peter

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  3. "In acceptance, the level of self-esteem is not typically as high as during ignorance, but it is much more informed."

    That is something I really do miss sometimes. Before I knew about asperger's, I used to have times of really high confidence (offset by times of deep depression) and I was so much more willing to "put myself out there" than I am now.

    But I do realize that it was a blind confidence and that I had no idea how I was coming across to people (I still have no idea, but I have a little better understanding and my understanding is still growing over time.)

    Even knowing it was a blind confidence and knowing that I was out there annoying and even offending people without realizing it and often making a fool of myself in others' eyes but not realizing it .... even knowing all that, I do miss the blind confidence.

    But once my eyes were opened, they couldn't be un-opened again.

    Although, even though I complain about what I've lost, I really have gained much more from knowing about my diagnosis. I have my diagnosis to thank for being able to go back to school and figure out how to stay there as long as I have (eight years and I'm a doctoral candidate now.) Before the diagnosis, I tried to go to university three times and failed to succesed each time and wasn't even entirely sure what had gone wrong.

    So, yes, I've gotten more than I've lost. But that doesn't make me stop missing parts of the old me.

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