The Human side of the Aspergers Diagnosis - Part 1: Parents
Posted Apr 13 2009 12:00am
The aim of this series is to examine the parts of the aspergers diagnosis which are normally overlooked in the textbooks. There's always a lot of information on the criteria and the tests but there's not a terrible lot of material on the reactions.
I'll try to cover the reactions of parents, others and the diagnosed aspies themselves. If I think of some other groups along the way that need to be covered, I'll try to do them justice too.
Parents often have very extreme reactions to their child's diagnosis. Depending upon the parents, their reactions could be opposite. Indeed, when my son was first diagnosed, my wife and I experienced the "opposites" reaction described under "relief".
The Quiz and Denial
One of the biggest problems with aspergers is that there is no "litmus paper" test. On the face of it, Aspergers often gets diagnosed with a quiz and a bit of observation. This makes it very easy for parents to deny the condition.
After all, it's like someone doing an "am I a good lover?" quiz in dolly magazine. You can skew the results any way that you like. It doesn't look all that professional.
No parent ever wants to admit that there's something "wrong" with their child. It's hard enough when it's a broken arm or cancer or something else that you can see or x-ray but when it's mostly "invisible" and it's "incurable", it leads to denial.
The Sins of the Fathers
One thing that Doctors often leave out of the initial diagnosis is any mention of the condition being hereditary. This isn't left out because it's incorrect but rather because it can provoke strong reactions in the parent.
Initially, the parents are upset and in denial about their child but once the "genetic truths" come out, the finger starts to point squarely at one parent or another. The finger pointing generally isn't done by the doctor and it's usually implicit but neverthless, it's often taken as a "threat" by one or both parents. They'll often strengthen their denial by pointing out that "I never had these sorts of problems", either forgetting that they in fact did, or forgetting that aspergers presents quite differently from one person to another.
Often, for the mother, the diagnosis can reaffirm a feeling that "there has been something not quite right". Mothers tend to have an instinct about these things and they spend enough time with their own children and with other people's children (in mother's groups, school and preschool groups), to know that there are developmental differences between their child and others.
This is much more difficult for working fathers to spot. They're not home as often and they rarely see their children in social situations. The problem is exacerbated if the father unknowingly has Aspergers himself. For a start, he will probably have avoided many of the social gatherings which provide opportunities to see his child relate. He will be less likely to pick up non-verbal cues and may not necessarily see danger signs in his child's play. He will also tend to see only a repetition of the same sorts of things that happened to him in his youth. This makes it easy to dismiss the condition as "normal".
Having one parent who needs the diagnosis to explain issues with their child while the other parent dismisses/denies it as "normal" can lead to all kinds of unsettlement. You should not allow this to continue for long as it's detrimental to "family health". In my case, the cure was simply for me to be asked to read parts of the textbooks which I responded to with; "this sounds more like me than my son".
After passing that response, I was told about the genetic link and it all began to make sense. After all, even aspies who unknowningly have the condition can relate to feeling "alien".
Settling Over Time
As a general rule, parents settle over time, though for some the denial continues and they don't ever use the label. This is particularly true for grandparents. In the case of grandparents, it doesn't matter that they don't accept the condition because the label itself won't change their love for their grandchildren. In time, they'll learn to overcome many of the issues of aspergers (such as not using metaphors/figures of speech), just as the child will improve their interpretation.
There is a problem with parents who don't accept the label. Non acceptance of a label by a parent translates to non-acceptance of funding and assistance. This can be quite damaging to a child's education and social development. Similarly, such non-acceptance can lead to some abusive parents attempting to "bully" their children into normality - or worse, attempting to "cure" the behaviour with dangerous therapies such as chelation.
Working with the label provides a lot of benefits, not the least of which is a settled home-life for everyone.