Tuesday, July 28, 2009

Advice ‘for’ and not ‘about’ us

“Adam,” a romantic comedy, opens to limited release July 29 in the United States. Its tagline sums up the film as “A story about two strangers. One a little stranger than the other...”

Publicity compiled on the Internet Movie Database (www.imdb.com) reveals that the male romantic lead, Adam (played by Hugh Dancy), has Asperger syndrome (AS), which is often characterized by difficulties deciphering social nuances and understanding and expressing one’s emotions. In the movie, Adam develops a relationship with his upstairs neighbor, Beth, who is played by Rose Byrne.

Dr. Jackie Marshack, a psychologist and marriage therapist based in Vancouver, Wash., is using the movie's upcoming release as an excuse to promote her new book, “Going Over the Edge?” (www.prweb.com/releases/2009/07/prweb2646174.htm).

Marshack reports that she has observed Asperger/neurotypical (NT) couples developing very strained relationships. “Worse yet, conflicts can escalate to damaging proportions involving divorce, domestic violence and depression.”

Another family therapist, Maxine Aston in the U.K., coined the term “Cassandra Affective Deprivation Disorder (CADD)” (www.maxineaston.co.uk/cassandra/), singling out Asperger syndrome as the causal factor in a relationship where a partner or spouse has unmet emotional needs. Cassandra, in mythology, was cursed with always stating the truth and never being believed.

As I understand CADD to be described, the neurotypical partner doesn't feel loved or understood by the partner who has AS and the AS individual may either be undiagnosed or may deny his or her diagnosis.

There are surely multiple situations about which a person can be in denial and leave a partner feeling isolated — alcohol or drug addiction, to cite just two examples — so I question why Asperger syndrome was singled out in this way.

I’m growing increasingly concerned about the potential for discrimination against people with AS based upon wholesale application of the ideas of Marshack and Aston. Their ideas seem solely to be based upon their work with their own clients and their personal relationships.

In May 2009, noted AS researcher Dr. Tony Attwood issued a statement on the Web site of Families of Adults Affected by Asperger's Syndrome (FAAAS, www.faaas.org/): “I would like to state quite clearly that having a diagnosis of autism or Asperger’s syndrome does not render a person automatically incapable of being a good partner and parent,” the statement reads in part.

From personal experience I am well aware of the constellation of behaviors that my AS diagnosis encompasses and I acknowledge that weaknesses are co-mingled with my strengths.

If we fall short in any area of life, then surely we could benefit from advice that is written for’ and not ‘about’ us: but the available literature is lacking in this area.

The search of an online book retailer with the term “Asperger relationships” gave me “Asperger Syndrome and Long-Term Relationships” by Ashley Stanford. The “Frequently Bought Together” section suggested “The Other Half of Asperger Syndrome: A guide to an Intimate Relationship with a Partner who has Asperger Syndrome” by Maxine C. Aston and “Alone Together: Making an Asperger Marriage Work” by Katrin Bentley.

All of these books are written by and for a neurotypical woman with an AS male partner. None of them mirror the dynamic of a same-sex relationship or a relationship in which the female partner is the one who has AS.

Even if a book speaks directly to a person who has AS, it frequently makes the assumption that the person with AS is a male. In doing so, it fails to encompass social expectations that women uniquely face.

Part of the problem is that females are under-diagnosed compared to males with AS (a ratio of 1 in 10) in contrast with what researchers believe is the actual rate of occurrence (closer to 4 in 10).

I hope that as women with AS achieve a higher profile, authors and publishers will tap this market and offer them assistance that speaks directly to their needs. You will have at least one reader who avidly awaits such a book.

Published July 28, 2009 in the Lake County Record-Bee

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