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Spouses with Aspergers

Question

My husband was recently diagnosed with Aspergers. He graduated from college, but his self-absorption, social awkwardness and rigid behaviors have negatively affected our marriage. Is there hope for our relationship?

Answer

If there is one word that describes the reaction of a family member to the diagnosis of Aspergers (high functioning autism) in someone you love, that word is loneliness. Certainly it is not easy to bridge the communication gap that exists in the everyday life which you describe. It is important to look at the history of your relationship. You must have had good times together and shared positive feelings about each other. Try to recapture whatever glimmers of that you can of what brought you together. You may benefit from consultation with a mental health professional who is experienced in helping people in your kind of situation. Even if your husband won't go with you, you may gain some insight into the relationship that will help you regain some hope, and possibly change the chemistry of what is happening right now in your relationship.

It is often both a major relief and a major disappointment to be diagnosed or married to someone who is diagnosed with Aspergers. Your hopes may be dashed and it may feel worse right now, but the truth is your spouse is still the same man you have loved and married. There is no way out of the Aspergers diagnosis, but now that you and he know more about him and his sensitivities and behaviors, it is finally possible to find ways to compensate and learn and change and grow.

People can change. Since your husband functions at a high cognitive level, he will be able to use that to learn social behavior that is less awkward and rude. In order to work on this it will be important for him to accept his diagnosis. That is the next hardest step. After that, you and he can work on overcoming the hurdles and progress can be seen. He can change.

Once the diagnosis is made and then accepted, adults with Aspergers are able to move forward – not quickly and easily perhaps – but slowly and steadily. It takes patience and perseverance. You will both have to change some of your current understanding and expectations. In every marriage couples must make some sacrifices and compromises that they did not expect, and this often brings couples to a deeper more mature place in their love, marriage and commitment to one another.

In a marriage it is common for a husband and wife to have some disagreements. They may find little things that get on each others nerves. They may often misunderstand one another, but usually a couple can find a way to work things out in a healthy relationship. However, a couple affected by Aspergers may have larger issues. A wife may start to see a particular pattern in the actions of her husband or the way he avoids confrontation. She may not understand why he doesn't remember things or offer to help her around the house. She may wonder why he doesn't catch on to her hints for affection or let her finish a conversation. At first she may pass it off as laziness or stubbornness. For a couple not knowing of the possibility of Aspergers, it may soon lead to frustration, anger and hurt feelings.

Once husband and wife accept that Aspergers is going to be part of their lives, there are steps they can take to make their relationship work. They may have to accept the lack of spontaneity. They must realize they need to be more direct in their communication. It may be difficult at first, but there are many support groups and self help ideas that can be found on the web.

Here are some helpful relationship tips:
  • Ask your spouse to ask questions when he is not sure of nonverbal cues.
  • Be accepting of each others dislikes, quirks, or calming activities.
  • Communicate with your Aspergers spouse precisely and directly. Since Aspergers adults have trouble reading non-verbal cues, you will need to give full and complete messages. Do not speak ambiguously. Try different forms of communication, such as letters, lists and email.
  • Establish routines and plans agreed on by both partners.
  • Find help for yourself. Get involved with a support group for spouses of Aspergers adults. If you become depressed, don't hesitate to get medical assistance.
  • Prepare yourself to take on the majority of the parenting responsibilities. Many men with Aspergers have difficulty relating to children. It is usually up to the non-Aspergers spouse to provide a nurturing and consistent environment for children.
  • Recognize the traits of the disorder. Aspergers adults frequently have a lack of empathy and an inability to consider the viewpoints of others. They often prefer rigid routines that others find difficulty to follow. Do not see any of this as a personal attack -- this is part of the disorder.
  • Respond instead of reacting. This can be difficult when you're frustrated with your Aspergers spouse, but if you force yourself to remain calm, you will have a more positive interaction.
  • Seek on-going professional help for your spouse.
  • Set up times to openly listen to each other.
  • Set up to do lists, calendars, reminders.
  • Talk openly about finances. Aspergers adults frequently have poor money management skills. An Aspergers husband may want to spend lavishly on his hobby, yet be critical of normal household expenses. Using a third party, such as a financial planner, may be helpful.

Married couples affected by one or even both partners with Aspergers can have a happy, loving, and successful relationship. It may take a little work and a little extra effort, but it is possible and it is worth it. Couples that truly love each other can and will make their marriage work.

Living With Aspergers: Help for Couples

Parenting Teens with Aspergers

Adolescence is full of challenges – especially if a teenager has to deal additionally with the Aspergers condition.

The change is fast, everywhere, and hard to keep up with: The body changes in response to increasing levels of sex hormones; the thinking process changes as the youngster is able to think more broadly and in an abstract way; the social life changes as new people and peers come into scope. Yet the youngster needs to deal with every single one of these changes, all at the same time! With their willingness to help, that’s where the parents come in, who have "been there", with the life experience, maturity and resources. So, how can parents help? Recognizing the complex and sometimes conflicting needs of an adolescent would be a good point to start.

Teenagers yearn to develop a unique and independent identity, separate from their moms and dads. Yes, they love their parents, but they don’t simply want to follow their footsteps. They challenge their parents in any way they can. They disobey their rules; criticize their "old fashioned" values; they discard their suggestions. Experienced moms and dads know that sometimes they have to be very "political" approaching their adolescent kids, if they are going to get their point across. On the other hand, teenagers give a lot of credit to their peers. They yearn to belong to a peer group which would define and support their identity. They may attempt to do things very much out of character just to gain the approval and acceptance of their peers. They tend to hide their weaknesses and exaggerate their strengths. Of course, what teenagers consider as "weakness" or "strength" may sometimes shock their parents.

Young people with Aspergers (high-functioning autism) bring their special flavor to the adolescence, essentially determined by the levels of three ingredients: interest, avoidance and insight.

Level of interest—

Since all forms of Aspergers has an impact on social development by definition, most teenagers with moderate to severe Aspergers will show little or no interest in others. They may seem to be totally unaware of their peers’ presence or they may appear indifferent when peers try to interact. As Aspergers gets less severe, the level of interest in peers usually increases. For these young people, the quality of social interactions mostly depends on the levels of avoidance and insight.

Level of avoidance—

In the social development of teenagers who show some interest in peer interactions, social anxiety and resultant avoidance play an important role. Some young people get very nervous just with the thought of approaching others and may choose to avoid it at all costs. Their avoidance may appear as if they are not interested in others. It is important to differentiate this since anxiety can be treated much more easily than genuine lack of interest.

Anxiety: A Fifteen year-old adolescent with Aspergers was brought by his mother to seek help with his high level of social anxiety. He was refusing to go to school, where he lately had been labeled as "tardy". Their home was in walking distance of school and he would leave home late in the morning to avoid his peers riding or walking to school. He would not go to the school cafeteria to avoid waiting in line. He would avoid classes in which students had to study in groups. Most of his anxiety could be eliminated over a few weeks by the trial of an anti-anxiety medication which he tolerated well and he was able to function better in school.

Most frequently, interaction with peers will create more anxiety than interaction with younger or older people: Younger kids are safer to approach since they would be more likely to accept the dominance of an adolescent with Aspergers and less likely to be critical. Older teenagers and adults are safer because they will be more likely to understand and tolerate. Moms and dads therefore commonly observe that their kids with Aspergers prefer to interact with younger kids or adults over their peers.

For teenagers with Aspergers who show interest in peers and do not avoid contact, the quality of social interactions will depend on the level of insight.

Level of insight—

Yet some teenagers with Aspergers will not avoid interacting with others; younger, older or similar age. Rather, they are eager to communicate, though, often in a clumsy, in-your-face way. The level of their insight into their social disability will then become the determining factor of their social success. If they are unaware of their shortcomings in gauging the social atmosphere and reading social cues, they may inadvertently come across as rude, insulting or boring. They may miss subtle criticism, sarcasm or tease. As they develop better insight, they become more motivated to learn which had not come naturally and intuitively. They also have a better chance to work through a sense of loss, common to all disabilities.

Coping with the Loss of Normalcy—

Regardless of the individual developmental route, most kids with Aspergers start realizing that they are not quite like others at some point during their adolescence. A few factors seem to facilitate the process:
  • higher IQ
  • higher level insight into difficulties in social interaction
  • higher level of interest in others

Once the adolescent realizes that he has significant difficulties in conducting social relationships compared to his peers, he needs deal with this loss, just like dealing with another loss. Understanding the thoughts, feelings and behavior of an adolescent with Aspergers is the necessary first step in helping him out and being there for him. Considering this coping process in a few stages may make the caregivers’ job easier:
  • Acceptance
  • Adaptation
  • Anger
  • Denial
  • Depression

Most commonly, the adolescent will not go through these stages one after another, but rather display a larger or smaller aspect of each at any given time. This is a painful process for not only the adolescent but for others who care for him as well. Moms and dads may find themselves compelled to forget the whole thing and act as if nothing is happening. Well, we are all tempted to avoid pain and denial is an excellent pain killer. The good news is, as much as the denial is contagious, the courage and strength, too, and seeing his parents dealing with the pain calmly and matter-of-factly will encourage the adolescent talk about his anger and frustration. This will in turn help the adolescent get closer to the acceptance and adaptation:
  • You don’t have to bring it up, but when he does, give them a good listening ear and be patient.
  • Don’t try to change the subject, unless your youngster does so.
  • Don’t try to minimize his difficulties, but also don’t let him exaggerate, providing gentle reality testing.
  • Offer the option of counseling, since sometimes it is easier to talk to a stranger; however, try not to push the idea directly even if you feel that your youngster clearly needs professional help.

Sometimes you have to be very political trying to sell an idea to a teenager. The mere fact that the idea is coming from his parents may make him refuse it. Let the idea come from a family friend, teacher, or a neighbor he trusts. Give him time to think about it. He may come back to the suggestion when he feels he is ready.

Consider trying an antidepressant medication if he doesn’t seem to be able to move on. Look for the following common symptoms of clinical depression. If five or more of these are present week after week, put your foot down:
  • Appearing sad for most of the time
  • Becoming irritable and angry with the drop of a hat so that family members start walking on egg shells
  • Blaming himself unfairly for anything that goes wrong
  • Complaining that he is tired all the time and wanting to take naps during the day
  • Eating less or more than usual
  • Losing interest in activities he usually enjoys
  • Making remarks like he hates life, he hates you, nobody loves him, or wishing he was dead
  • Not being able to fall asleep, waking up in the middle of the night and having difficulty falling back to sleep
  • Putting himself down, saying he is stupid
  • Withdrawing himself from the rest of the family, refusing to participate in group activities

Clinical depression is a serious condition which carries a significant risk for self-harming behavior. If you suspect that he may have clinical depression, set up an appointment with a child and adolescent psychiatrist as soon as possible and do not put this as an option. He does not have a veto power on this decision.

Anger, Denial and Depression A young teenager was referred from a clinical study of depression in kids and teenagers to maintain his antidepressant medication. My clinical evaluation revealed Aspergers in addition to his ongoing depression. The diagnosis of Aspergers made very much sense to the moms and dads who had wondered for years what was wrong with their son who, among other things, had difficulty relating to his peers, despite being very bright and able to communicate with adults in a quite sophisticated manner. Since he had responded only partially to the study medication we tried him on another antidepressant. Even though his mother thought that he was happier, more motivated and energetic, he was not able to recognize any improvement.

During his most recent follow-up he was very angry with me and announced that he didn’t think that he had Asperger’s, he wanted to stop his medication and wished everybody leaved him alone. My suggestion for counseling was discarded, too. His mother and I firmly insisted that he continues to take his medication. We didn’t push the diagnosis or the counseling idea. I recommended his mother that if he does not feel like coming next time, she comes by herself so that we can strategize how to continue his treatment.

Most teenagers with Aspergers excel in one or two subjects. They tend to accumulate a lot of information on the subject and love to talk about it over and over. Unfortunately, after one point family members end up losing interest and start getting bored to death. Rather than avoiding the subject, try finding out new ways to engage the young person in the subject. Structure the topic in a different way. Find a way to challenge him. Be creative and let sky be the limit! Your interest will make your youngster feel better about himself, realizing his mastery on the subject will boost his self-esteem.

Many teenagers with Aspergers resolve their sense of loss by turning the issue upside down: Rather than clinging to depression and despair, they find their identity in Aspergers. They get in touch with other youth with Aspergers. They take on themselves educating their peers about Aspergers at school. They set up web sites, chat rooms and even write books about it. They gather support for a better understanding and treatment of Aspergers. Encouraging your youngster, providing him means to this end and removing the obstacles in front of him may turn out to be the best antidepressant treatment ever. All this may seem remote and you may not know where to start.

Consider the following tips:
  • Attend support groups for parents and make acquaintances.
  • Get in touch with the organizations like the Autism Society of America or Asperger Syndrome Coalition of the U.S. and contact their local chapters.
  • If it doesn’t work right away, don’t get discouraged and keep trying, always letting your youngster make the first move in showing interest.
  • Invite your new acquaintances to your house and encourage them to bring their kids.
  • Leave brochures, leaflets and other information about teen groups around to catch the attention of your teenager.

Acknowledging Sexuality—

In contrast with their rather slow social development and maturation, teenagers with Aspergers develop physiologically and sexually at the same pace as their peers. As their sons and daughters with Aspergers grow older and display sexualized behavior, many moms and dads find themselves worrying that their:
  • youngster will be taken advantage of
  • youngster will contract sexually transmitted diseases
  • youngster will not have the opportunity of enjoying sexual relationships
  • youngster’s behavior will be misunderstood
  • daughter will get pregnant or their son will impregnate someone else’s daughter

While some moms and dads get concerned that their kids show no interest in sexual matters, others have to deal with behaviors like:
  • masturbating in public
  • staring at others inappropriately
  • stripping in public
  • talking about inappropriate subjects
  • touching others inappropriately
  • touching their private parts in public

Talking about sex, especially the sexuality of our kids makes us feel uncomfortable. Even though we all wish that our kids have safe and fulfilling sexual lives, we hope the issue just gets resolved by itself, or at least somebody else takes the responsibility of resolving it. We may find ourselves lost trying to imagine our kids, who have significant problems carrying a simple conversation, building relationships that may lead to healthy sexuality. We may find it comforting to believe that our kids don’t have sexual needs and feelings, and avoid bringing up the subject in any shape or form. We may feel uneasy about sex education, believing that ignorance will prevent sexual activity.

How can we make sure that our kids with Aspergers express sexuality in socially acceptable and legally permissible ways, avoiding harm to themselves and others?

The key is making your mind that you will address the issue, rather than avoid it. Set up a time with your youngster to talk about sexuality, rather than making a few comments about it when the issue is hot, right after an incident, when everybody feels quite emotional about what just has happened. Ask direct questions about what your youngster knows about sex. Ask about his desires and worries. Tell him what you think should be his first step. After inquiring and talking about the normal behavior, set realistic but firm limits about inappropriate behavior. Seeing your level of comfort around the issue, your youngster will get the message that it is OK to have sexual feelings and it is OK to talk about them. Getting this message alone will bring the tension around sexuality a few notches down. If this approach fails, please do not be shy about asking for help.

Other moms and dads with adolescent kids would be a good starting point. Your youngster’s school may also be able to help. Finally, you may inquire about professional help which should provide an individualized sexuality assessment and sex education based on individual needs, while utilizing behavioral modification techniques to discourage inappropriate sexual behavior and promote appropriate sexual behavior.


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