The Label - Part 1: Parents

Introduction

The aim of this series is to look at how various groups of people react to label disclosure. 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 once a label is assigned. 

I plan to cover, the reactions of parents, those being diagnosed and others around them.

Parental Reactions

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 autism spectrum disorders is that there is no "litmus paper" test. On the face of it, Asperger's and autism 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.

Image by Daniela Dimitrova from Pixabay

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 nevertheless, 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 autism presents quite differently from one person to another.

Relief

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 Asperger's or autism 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 issues. 

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 people who don't know that they're on the spectrum can usually relate to feeling "alien" when surrounded by others.

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.

Non-Acceptance

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.

In part two, we'll look at how the person being labelled feels about the label and when the best times are to tell them. In part three, we'll look at how others receive the news.