There is yet another aspect to the diagnosis of ASD that further complicates the task most families face. This aspect is that the day to day, hour by hour, moment by moment experience of life with a child on the spectrum may be profoundly affected in very difficult and disconcerting ways.

Unquestionably, there is tremendous variance here. Some ASD children are relatively quiet and docile and in this respect, easier to live with. Others are quite unpredictable, even volatile, and extremely hard to manage. The most simple, mundane things most people take for granted – the natural, unquestioning way people get through the day - parents of ASD children may be unable to do. For example, some children perseverate in ways that turn family life upside down and some become profoundly upset by the way they think things are supposed to be. Some are terrible sleepers and some may be difficult to bring out in public because of behavioral outbursts.

While the parents of ASD children desperately need time away from them, this issue, too, tends to be more complicated than in families with typical children. Babysitters for such children tend to be quite difficult to find. Many teenaged babysitters are unable and unwilling to deal with the challenges such children provide and many parents feel uneasy leaving their child in this situation. Similarly, it is often impossible to impose on one’s neighbors, friends, or even family the way many parents do; one cannot simply ask to drop the child by while one goes to the store.

Others' Reactions

The reaction of others often complicates the difficulties parents face. One of the most painful aspects of raising a child on the autism spectrum can be the stares, disapproving looks, and critical remarks from passersby. This issue is often particularly problematic in families in which the children look outwardly normal (and most of them do).

Because they look normal and are usually quite bright, children (and adults for that matter) with Asperger’s Syndrome are especially likely to be misperceived as willfully defiant. Many times their “defiant” behavior is due to misreading a situation or being incapable of effectively dealing with frustration. Sometimes parents themselves do not realize their children are not intentionally thwarting authority. Unfortunate confrontations in schools are often due to teachers and school administrators misunderstanding the disorder.

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