The ASA's 38th National Conference on Autism Spectrum Disorders (July 11-14, 2007) of ASA

The Westin Kierland Resort & Spa, Scottsdale, AZ

http://www.autism-society.org/

For a complete author index with session numbers, please click here
Thursday, July 12, 2007: 10:45 AM-12:00 PM
Herberger Ballroom 3
#2574- Marriage from both the Asperger Syndrome and Non-Spectrum View
Stephen Shore and Kristi Sakai team from both sides of the autism spectrum up to examine some of the many challenges faced where one of a couple has Asperger Syndrome and the other does not. Through on life experiences, the presenters will suggest practical solutions for decoding the Hidden Curriculum behind successful marriage and other relationships will be provided - especially when one of the couple is from the culture of autism.

Presenters:Stephen M. Shore, Ed.D., Adelphi University in New York, Assistant Professor - Nonverbal until four and recommended for institutionalization, Dr. Shore focuses on empowering people with autism to develop their capacities to their fullest extent possible. Internationally known author and educator, Stephen serves as a board member for the Autism Society and, other autism-related organizations and is on faculty at Adelphi University.

Kristi Sakai, Mom, Parent, Author, Editor - Kristi Sakai is the mother of three children on the spectrum, author of ASA's Literary Work of the Year 2006 in the Family/Social Category, Finding Our Way: Practical Solutions for Creating a Supportive Home and Community for the Asperger Syndrome Family. She is editor of "AAPC Community of Support", and a national presenter. But her greatest passion is being "Mom" to Tom, Kito and Kaede, and wife to Nobuo. Kristi is currently co-writing (with Peter Gerhardt) The Hidden Curriculum of Sex.

 
Stephen Shore and Kristi Sakai have experienced marriage from opposite ends of the spectrum. Both married for 16 years (not to each other), Stephen to a non-spectrum (NS) spouse and Kristi to an Aspie, brings a unique joint perspective. In our presentation we will share multiple strategies for improved communication between AS/non-spectrum couples, suggestions to enhance the relationship for better emotional intimacy, and a wealth of both serious and humorous (but true!) Hidden Curriculum of Asperger Marriage examples.

Marriages between Aspies and NS persons face significant challenges. Characteristics of Asperger Syndrome such as difficulty reading body language and facial expression, as well as the struggle to perceive emotions in a partner and self create significant communication hurdles for the AS individual and his or her partner. In addition, the non spectrum spouse may not truly understand how much the AS partner is struggling, and that their behavior causing them to fall short of (sometimes unrealistic) expectations is not intentional. Repeated communication errors may lead to frustration and tension. Instead of supporting each other, resentments can build to the point of apathy. The heartbreaking conclusion is the loss of the relationship.

Adults and children with AS are often “rubber banding”, which is to say they have a natural social and physical state that may be lower, and a “stretched” state where they are able to push forward and achieve more. An adult with AS may need to stretch far beyond his natural comfort level in order to meet the social expectations required in the workplace. He or she may need the quiet and solace of home to recover. However, like all adults with a partner or family, he may be further met with complex familial needs requiring deciphering and action. Everyone is less flexible when tired or stressed, for example, all of us are less able to maintain focus and accomplish tasks when ill. We aren't at our best, and consequently we aren't able to achieve our best results. For individuals on the spectrum, the flexibility required just to be a functional adult may be extremely taxing. He or she may be especially likely when tired or overwhelmed to return to a less functional level, or “snap back” and be less capable of flexibility or stretching to meet expectations. Like all of us when stressed the AS adult may also react with unintentional irritability, frustration or anger. The NS spouse, however, may take it quite personally, not understanding how their partner can be insensitive to their needs and so clueless as to how to meet needs in the relationship.

The first step to resolving this perpetual conflict is to examine the specific characteristics that apply to an AS individual and look for the specific ways they impact his or her life, and relationships. Awareness alone can provide a relief to the AS partner and diffuse a great deal of the resentment in the NS spouse. The next important step is willingness from both partners to work toward changing expectations of each other, and to create new ground rules for the relationship. This requires both renewed commitment to the partnership, a mutual desire to improve the quality of life together, and a willingness to try to be compassionate with each other through the learning process.

The following are a few examples of effective communications strategies for the NS partner to use in an Asperger Marriage: “What, do you want me to draw you a picture?!” Yes! Individuals on the spectrum are generally visual learners and verbal instruction may be difficult to follow. For example, when sending an Aspie partner to the store to pick up a specific item, the NS partner may become frustrated when trying to explain the item or its location on the aisle. Kristi recently sent her husband, Nobuo, to the store to pick up sliced turkey. This request was meant with puzzlement. Nobuo said, “What is sliced turkey?” Kristi, tired herself, became frustrated thinking the direction was pretty self-descriptive. Simply saying, “SLICED TURKEY” over again was not helpful, and nor was giving the general location of where it could be found in the store, because Nobuo came home with turkey bologna, which is not what she requested. As there was an imminent need, Kristi made a quick trip to the store to purchase the item herself. When returning she showed him the item, providing him with a concrete example. She herself took note of the product name and location in the store where she purchased it. The next time she sent Nobuo to the store for an item that was needed in a hurry she quickly scrawled a map and wrote down the name of the product. He proudly returned with the correct item. Although to outside eyes it may seem cumbersome and time consuming to draw a store map, it is actually time and energy saver because it eliminates extra trips and increased frustration between partners. AS/non-spectrum partners may find using visual shorthand with quickly drawn examples saves a great deal of time and energy in the long run. Another visual strategy to share for directions includes looking up destinations on Mapquest and providing it to the Aspie partner.

Don't assume s/he knows. The NT spouse walks to the door arms heavy laden with groceries, and struggles to open the door. She takes note that the AS spouse who is within line of vision doesn't rise or offer to help her. She sighs with frustration as she returns to the car for another armload. Her irritation rises as her partner continues to ignore what she believes to be obvious struggling. Finally she yells in frustration, “Why don't you help me!” The AS spouse reacts with shock and hurt, and yells back, “I didn't know you needed help!” Why didn't the AS spouse recognize that his spouse needed help? He may not have read what would have been obvious body language as she struggled to carry the heavy groceries, he didn't catch her frustrated sighs and as she didn't verbally ask for help, he may have assumed she didn't need it. Rewind. How could they have done this differently? The NS spouse could have simply said, “Can you help me honey?” Or at a later time (when calm), the NS partner could say, “When I come home with the groceries, it would really help me if you could bring them in for me, and then I'll put them away.” Over time the AS/ NS partners establish a routine of clearly outlined expectations.

Allow for processing time. Individuals with AS may need longer processing time, particularly for verbal instruction, and cannot instantly react to a request. For example, the NS spouse comes home and says to his AS wife, “I've decided I'm taking you out to dinner.” Instead of being pleased because now she doesn't have to cook dinner, she may react with frustration and say, “No!” The NS partner is hurt because he was making a kind gesture. But for the AS partner, although she hasn't already cooked dinner, in her mind she had already decided what it will be and too instantly change her internal plans is not something she may be able to easily do. Instead of springing a last minute change on an Aspie spouse, a better strategy could be for the NS partner to call her at work earlier in the day saying, ‘What would you think about us going out to eat dinner tonight?” The AS spouse might need to adjust to the idea, and by the time the NS spouse meets her at home she has warmed to the idea. She simply needed that adjustment time. This is even more crucial when it comes to more serious decisions, such as those related to children or money. An effective strategy is to approach the partners with Asperger Syndrome, suggest an idea and then “leave it there” and wait for him or her to reply back, perhaps even days later. This allows both partners to carefully consider the implications. Over time both partners can learn to trust they will not be pressured into making a decision they do not feel comfortable with. Taking the extra time eliminates the tension often resulting in arguments.

A simple, but effective model as a beginning step toward recognizing strengths, creating positive interactions and providing a framework for change is the POWERS Model. This model addresses some of the common concerns when marriages hit a rough patch, and is an effective initial strategy to follow. POWERS is an acronym for: Positive Praise, Organization, Water, Exercise, Rest and Rejuvenate, Sweetheart

Positive praise: Instead of finding fault, at least temporarily both partners attempt to ignore shortcomings and point out positive actions the spouse is taking and praise them for it. For example: Instead of finding fault with HOW the partner completed a household duty, the focus is on being thankful the task was completed. “Thanks for doing the laundry! I appreciate it.”

Organizational: Many adults with AS are very organized, whereas others struggle with organizational skills. The NS spouse can help the AS partner by providing organizational help. A simple example of this is perhaps providing a central location for specific items. “I bought you this eyeglass holder for the table next to your chair.”

Water (stands for hygiene and appearance): After being married awhile we may no longer make the effort to care for ourselves in the manner we previously did before catching our mate. Water means taking that little extra effort to be attractive to our spouse. Perhaps this means that although we're tired we take a quick shower after work to freshen up just as we would have before marriage.

Exercise: Exercise is one of the few ways to naturally boost serotonin levels in the brain therefore helping to reduce depression. Allow each partner exercise time can provide needed alone time for de-stressing. When frustrated it is an effective way to burn off some negative energy and diffuse tension. Instead of having a fight, allowing either partner the option to walk away and “walk it off” can nip an argument in the bud before it becomes a full-fledged fight. Allowing time to self-calm allows the issue to be resolved in non-confrontational manner later.

Rest and Rejuvenation: Although many partners are overwhelmed with work and family obligations and it seems impossible to find time to renew ourselves, it is extremely important to take care of oneself in order to be our best in the world and in our relationships. It might mean encouraging your spouse to go out with friends a couple of times a month for girls or guys night out. It might be something small such as making the decision that on Sunday morning it is important to allow time to lay around reading the paper, than it is to clean up the house. Or that one partner recognizes the other really needs a nap and watches a movie or plays a game with the kids so they'll be quiet. It is allowing time for both yourself and your spouse to relax without pressure. In the case of the NT spouse it may be necessary for him/her to clearly state, “I need to take a nap.” Or, “I need a break, please watch the kids for an hour.”

Sweetheart: Let's not forget the spark that caused us to fall in love in the first place. Did you find your husband's nerdiness quite endearing when you met him? Did you make a little extra effort to push beyond your comfort level and shyness to get to know your wife, but now that you have her, you've forgotten the importance of that? What little rituals did you have in the early days, what small sweet gestures did you make? It might be something as small as bringing her a cup of tea, or greeting him at the door when he comes home. Remember, this is the person you love, remind him/her that you do.

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