Aspergers in the Family

It used to be thought that individuals with Aspergers did not marry because of their social difficulties. This is not true! There may be many undiagnosed people with Aspergers who have spouses and kids. Some may manage marriage and family life very well, others may have great difficulties. Living with an individual with Aspergers can be very difficult because of the very subtle nature of the disability. There is no physical sign of the disorder, and it can be hard to explain to friends and family that the peculiar behavior is not deliberate.

What Spouses Say—

The following are direct quotes taken from case histories written by spouses of individuals with Aspergers:

• "Anything he cannot face he throws away, and the consequences are -horrific... He keeps copious lists of 'things to do, but I have to tell him what they are. If I am not there, he loses the lists... His social behavior is appalling; falls asleep in company, makes rude noises."

• "All the unwritten rules of behavior were puzzling to him... Something which you think is obvious, is not to him... lack of perception about other people's intentions.. he does not recognize the needs of others... He did not seem able to project his mind into a hypothetical situation, or put himself in somebody else's shoes to see what it would feel like... He cannot see that his kids should be distressed because he does not visit them for weeks. He signed their birthday cards with his name until told they would prefer him to put 'Dad'."

• "... the paradox of an apparently kind and gentle man behaving with cold cruelty, and then being distressed and surprised by the result."

• "... he fails to recognize or understand other people's feelings... an inability to recognise when behavior is not appropriate."

What Can You Do For Yourself?

The first step in coping with any disorder is educating yourself about it. This can be especially difficult if your spouse has Aspergers. One very successful man with Aspergers describes himself like an 'anthropologist on Mars'! It can be difficult to understand that apparently hurtful behavior by your husband may not have been meant that way, but may be due to an inability to read your thoughts and feelings. You may need to be more frank and explicit than you would like, in telling your spouse what you are thinking and feeling and what you need him/her to do in response.

Because Aspergers can be seen as a disorder of insight into thoughts and feelings, it may be very difficult to engage your spouse in the sorts of discussions that marriage counselors or family therapists use. Indeed, such therapists may not have heard of Aspergers and may need information from you in order to avoid misunderstandings. You may like to think about other approaches instead - perhaps it will be more useful to talk to a counselor on your own, to have a chance to think through your feelings and decide possible coping strategies.

In brief, the following three steps have been useful for some spouses:

• Consider whether diagnosis would help
• Contact with others in the same position, for understanding listening, support and advice
• Counseling for yourself and your family

What Can You Do For Your Spouse?

As well as your spouse having difficulty understanding your needs for emotional closeness and communication, it may also be hard for you to understand your spouse's needs. He or she may be interested in things that seem very boring to you, or may find apparently normal social situations very stressful. Try and remember that he/she may not be able to read all the social cues which you understand without even trying. So getting very emotional (even when you have every right!) may not be the best way to get through - while a calmer, reasoned discussion (even writing things down) may work better. Avoiding personal criticism can help; one spouse suggests a more impersonal approach, e.g. instead of saying "You shouldn't do that," saying "People don't do that in social settings."

It may be hard for your spouse to change from routine, and he/she may need plenty of notice when such disruptions will occur.

If your spouse acknowledges his/her social difficulties, it may be useful for him/her to see someone who knows about Aspergers and could offer practical advice, or social skills pointers, rather than more insight-centered 'talking' therapy.

Aspergers and Genetics—

Some research shows that there are strikingly similar features in first or second degree relatives on either side of the family, or the family history includes "eccentric" individuals who have a mild expression of Aspergers. There are also some families with a history of children with Aspergers and classic Autism.

Should a relative have had similar characteristics when younger, they have a unique advantage in helping the child in that they know what he/she is going through. There is no formal identification of the precise means of transmission if the cause is genetic, but we do have some ideas as to which chromosomes may be involved. As our knowledge of genetics improves, we may soon be able to predict the recurrence rate for individual families.

But it may be a mistake to dwell exclusively on the genetics of Aspergers. There must be other factors involved. Experts suspect such variables as prenatal positioning in the womb, trauma experienced at birth, or random variation in the process of brain development may also play a role.

Even if you could identify the genes involved in Aspergers, it's not clear what you would do about them. It's not as if they are lethal genetic defects, like the ones that cause Huntington's disease or cystic fibrosis.

Living With Aspergers: Help for Couples

Aspergers Children: Guidelines for Meltdown Management

How should you handle meltdowns in your Aspergers (high functioning autistic) child?

With an Aspergers child, a certain situation is fraught with frustration, and potential anger. For example, the stress and strain of school days – which are so long and arduous – are like a compressed spring. It's compressed, and compressed, and compressed, and when they get home, there's an explosion (the Jeckyl and Hyde moment). After school, it may be a time for going for a run or a walk, watching TV, etc., to get it out of their system, to debrief or to get rid of that tension.

There are ways that moms and dads may pick up the signs that a meltdown is brewing (e.g., rigid thinking, being intolerant of imperfection, holding his head). Often times, there are warning signs that the Aspergers child is starting to get agitated. So, the circumstances and warning signs may be a clue.

Sometimes the meltdown comes out of the blue when you have no expectation that it's going to occur, that it's out of proportion to the situation. It takes everybody by surprise. Often what occurs is that it's very intense, but brief. What you have to go through is a program on emotions and anger management for that child so that they can telegraph their anger before hand in more constructive ways.

I use what I call “constructive destruction” or “recycling”. One child I worked with had major problems with his mood swings, which seemed to go up and down quite phenomenally and included periods of severe anger. But when he was coming up to those periods of anger, he had cans to crush, telephone directories to tear up, and all sorts of things that he “recycled” because he was fascinated by the environment, geography and recycling. He was able to be channeled to do that and feel better, having done that sort of “emotional vomit” to get it out of his system.

Anger is a serious issue because kids can get expelled from school for it. They may be okay with their schoolwork, they may be reasonably coping with their social life, but if you have one or two periods of anger, especially if somebody is hurt, then you're often excluded from school. And there are a number of Aspergers children that, due to one or two episodes where they were teased or bullied, the anger and the intensity of it gets everybody frightened about the situation. So there are areas in anger-management that need to be gone through, but really it requires someone with expertise in both Aspergers and emotions.

Children with Aspergers often exhibit different forms of challenging behavior. It is crucial that these behaviors are not seen as willful or malicious; rather, they should be viewed as connected to the child’s disability and treated as such by means of thoughtful, therapeutic, and educational strategies, rather than by simplistic and inconsistent punishment or other disciplinary measures that imply the assumption of deliberate misconduct.

Specific problem-solving strategies, usually following a verbal rule, may be taught for handling the requirements of frequently occurring, troublesome situations (e.g., involving novelty, intense social demands, or frustration). Training is usually necessary for recognizing situations as troublesome and for selecting the best available learned strategy to use in such situations.

Here are two very important suggestions on how to approach behavioral management in children with Aspergers:

1. Helping the Aspergers child make choices—

There should not be an assumption that the Aspergers child makes informed decisions based on his own set of elaborate likes and dislikes. Rather he should be helped to consider alternatives of action or choices, as well as their consequences (e.g., rewards and displeasure) and associated feelings. The need for such a set of guidelines is a result of the child’s typical poor intuition and knowledge of self.

2. Setting limits—

A list of frequent problematic behaviors such a preservations, obsessions, interrupting, or any other disruptive behaviors should be made and specific guidelines devised to deal with them whenever the behaviors arise. It is often helpful that these guidelines are discussed with the child in an explicit, rule-governed fashion, so that clear expectations are set and consistency across adults, settings and situations is maintained. These explicit rules should be not unlike curriculum guidelines.

An effort should be made to establish guidelines for limit setting so that parents do not need to improvise on the spur of the moment, thus possibly triggering the child’s oppositionality. When listing the problematic behaviors, it is important that these are specified in a hierarchy of priorities so that the parent and the child can concentrate on a small number of truly disruptive behaviors.

My Aspergers Child: Preventing Meltdowns

Home-Schooling Your Aspergers Child

In the home-school environment, routine can be maintained because there is not the impact of the needs of other kids or other interruptions. Further, you have the ability to teach to your youngster's strengths that may not be readily recognized by others within the school system.

As I am sure you know, it is often not the individual teachers that are at fault – but overcrowded and under-funded schools are often the bigger problem.

It may also help your youngster avoid the effects of bullying that is often associated with any youngster who is different. A great deal of research indicates the problems of bullying in Aspergers (high-functioning autistic) kids can be very significant and of course very damaging.

The youngster with Aspergers lacks social skills and the ability to fit in with their peers, yet they usually crave this type of interaction. So this can be a very problematic area for a youngster with Aspergers.

All kids learn a great deal of their social skills in school and it is no different for the youngster with Aspergers. Interacting with other kids will not only provide them with the opportunity to develop some social skills, but develop life-long skills that will be important to them later in life.

At some point in his or her life, your youngster will need to develop skills that will help them interact in society. They will also need to develop the ability to make decisions in your absence. It is not likely that they will have the opportunity to learn these skills in home school, unless you are very active with other social skills groups.

So this element of your youngster's development is one that you must address and consider when thinking about home-schooling. This can include looking at suitable youth clubs, sports and leisure groups that your youngster may be interested in.

You will also need to work on emotions, social situations, Feelings etc. as part of the home school curriculum. This can be through discussion, emotions cards, role-playing, using specially designed computer software and obviously getting out there in to the community for real life lessons and social skills testing.

It is also important to remember that there are certain protocols and legal requirements to follow for home schooling which you will need to check with your local education board.

Home-schooling can be excellent as it can better meet your youngster's needs and help to reduce bullying. But social skills and interaction also need to develop and this has to be properly considered for the home-schooled youngster.

As well as this any parent must take good advice on the subject and thoroughly research before taking such a significant step.

Home-schooling is a blessing and allows you to feel confident knowing that you are giving your Aspergers child the absolute best education possible. There can be specific and unique challenges when home-schooling an Aspergers child.

Things will change gradually, but they will change. Sometimes fear can sneak into your mind (e.g., fear about what the future holds for your Aspergers child; fear that he won't make friends; fear of what others might think), but try to block these thoughts out and only focus on what you can do today - just today - that will make your youngster progress a little and connect with you and the world around them a little bit more. Every progression is huge, and if there is any step back, which there probably will be, it is not permanent.

You probably chose homeschooling for your Aspergers child because:

• he was being bullied to the point of depression
• you knew that you could reach him in a way that nobody else could
• you knew that you could give him the best education he could get
• the school he was going to could not help or support him

These are all great reasons why you have decided to home-school your Aspergers child.

Here are some tips that really help with the day:

1. GET INVOLVED WITH HORSE THERAPY. Horses can work wonders for the emotional wellbeing of your Aspergers child. Horses can really connect with him in a way that is hard for him to do with people. It is almost like your Aspergers child can read their movements and communicate with them without words. It's great.

2. GO OUTSIDE OFTEN AND GET INTO NATURE AS MUCH AS YOU CAN WITH THEM. Aspergers kids have a deep connection to nature and the natural world. They commune with the animals and the plants, and feel connected to this world when they are around them. Go on hikes, take your child to see a waterfall, take him into the woods for a nature drawing, or just to sit and listen to the trees. They LOVE it.

3. INVEST IN ZOME TOOLS, LEOGS, K-NEX, OR ANY BUILDING TOY. Not only are these toys extremely therapeutic, they really get your Aspergers child to slow down, create, and focus. I don't know what we would do without them, and when our grandson is taking a break from his schoolwork, these toys really feed his need to use his hands and make something.

4. MAKE ART A BIG PART OF YOUR DAY. Arts and crafts are healing and really help your Aspergers child connect to the world around them. It does wonders for my grandson to have him creating a project and using his hands to mold something out of clay. They immediately calm and focus in a way that they are not able to do normally. My top choices for art are: CLAY AND POTTERY, PAINTING, and BASKETRY.

5. TRY WITH ALL YOUR MIGHT TO KEEP A RIGID STRUCTURE. All kids crave structure, but a child with Aspergers desperately needs it. It is structure during their day that allows them to feel confident that all is well in the world and that they can be sure that you know what is going on. It helps them to relax and helps them to trust you. If your Aspergers child is anything like my grandson, he will resist this structure, especially if there wasn't enough structure before. Just keep reinforcing the structure. Keep doing it. Make a schedule for the day and post it on the wall where your child can see it. If he is not reading well yet, read him the schedule aloud at the same time every morning before you start the day. Make sure that he knows that you are in control and that you know what is going on.

The Aspergers Comprehensive Handbook