There is yet another aspect to the diagnosis of Autism Spectrum Disorder (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 youngster on the spectrum may be profoundly affected in very difficult and disconcerting ways.
Unquestionably, there is tremendous variance here. Some ASD kids 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 - moms & dads of ASD kids may be unable to do. For example, some kids 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 moms & dads of ASD kids desperately need time away from them, this issue, too, tends to be more complicated than in families with typical kids. Babysitters for such kids tend to be quite difficult to find. Many teenaged babysitters are unable and unwilling to deal with the challenges such kids provide and many moms & dads feel uneasy leaving their youngster in this situation. Similarly, it is often impossible to impose on one’s neighbors, friends, or even family the way many moms & dads do; one cannot simply ask to drop the youngster by while one goes to the store.
The reaction of others often complicates the difficulties moms & dads face. One of the most painful aspects of raising a youngster 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 kids look outwardly normal (and most of them do).
Because they look normal and are usually quite bright, kids (and adults for that matter) with Aspergers are 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 moms & dads themselves do not realize their kids are not intentionally thwarting authority. Unfortunate confrontations in schools are often due to teachers and school administrators misunderstanding the disorder.