Monday, April 13, 2009

The Human side of the Aspergers Diagnosis - Part 1: Parents

Introduction
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.


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 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.


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 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.


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.

7 comments:

Marita said...

Great post that really does cover the different emotions and responses.

Another issue is siblings, how they react which I think depends very much on their parents reaction.

Anonymous said...

I have been told hundreds of times that it is not a psychologicl disorder, but a neurological one. A lot of guys with it say it is actually an advantage and want to be considered "neurodiverse" and call the rest of us "neurotypicals".The Grandparent thing is sure true-my Mom was a lifelong M.S. level secondary teacher and she was furious when I told her her Grandson was an Aspie-she thought I was a disloyal liar and refused to ever hear the word again. It is true about Mothers-I always knew something was different about my son but people just thought I was being neurotic.

Gavin Bollard said...

Marita; Good point about siblings, I'll try to include them though my own experience in this regard will probably be minimal.

Anon; You're quite right that aspergers is technically a neurological condition rather than a psychological but unlike many other neurological conditions, (and in common with psychological ones)aspergers leaves no evidence that we can readily identify.

For clarity, I've removed the comparison from the article.

Anonymous said...

Gavin,

I am brand new to knowledge of AS. We are taking my daughter to be tested soon, and I have no doubt that my husband has several Aspie symptoms.

Can you tell me if AS could be the reason a parent doesn't forsee potential hazards to the children? Examples are: a toddler being near a hot iron, or a toddler wandering into a parking lot or near a body of water while the parent is focusing on caring for one of the other children. Is this a multi-tasking problem or inability to conceptualize what might go wrong and directly related to AS?

If so, how can a wife lovingly and RESPECTFULLY handle these situations without making him feel as if he is not trusted to care for the children?

Enjoying your blog very much! Thanks for any light you can shed on this matter.

Gavin Bollard said...

AS could certainly be one of the reasons why a parent fails to see danger signs around children. We tend to get very easily distracted and we also have some difficulty thinking in children's terms.

Aspies do tend to be a little slower than normal parents in their reactions when children first arrive on the scene. It's only by causing them to set their own rules for safety that you'll be able to see any improvement.

I always underestimate the safety margins for my own children but I'm getting better. These days I attempt to "secure the site" whenever I take them anywhere.

The question of how to handle improvements and advice respectfully is very interesting and I need to ponder it for a little while. My wife has given me a lot of guidance over the years, most respectful, some not. I'll have to sort through the reasons why certain bits of advice did and didn't work.

I'll probably respond with a series of posts because that's the only way I think I can do the topic justice. Thanks for your feedback.

Anonymous said...

Thank you SO much. I look forward to reading any thoughts you can share that will help the wife of an aspie communicate respectfully and effectively (particularly on issues related to parenting) with her husband.

I've repeatedly been accused of not saying things respectfully and of not "trusting" him. I would like to change that but honestly do not have a clue HOW to do so. Maybe because I honestly fear for the children's safety at times....

Anonymous said...

I am an elementary teacher and feel so frustrated for the AS children I have come across. 3 of them had parents in deep denial. I've had loud outburts that disrupt the class. One child was "bullied" by his Mom to "Be" normal. As a caring professional this causes me lots of stress. There is no real help in the elementary setting in my district anyway. These students need a real understanding teacher with specific training. At least someone who checks in on them from time to time. I feel so alone, just me and what I can do with 20 plus other students. I can't suggest a diagnosis because I am not a medical doctor(and I don't want to diagnose) I usually plead with them to get a medical opinion and say "His repsonses are not appropriate for his age, he is not emotionally growing in sinc with peers.. It's on deaf ears! I see children who say things like, I hate myself, no one likes me, I don't have any friends! I communicate all of this to parents. I often am the third or fourth teacher pleading for help. I am legally bound not to use the "A" word. I dont' think it would help. I think to myself, this poor baby is going to be dropped kicked into middle school before he can be properly helped. I KNOW the teachers in middle can band together and hold a joint meeting and get the child in socialization classes and small home rooms to monitor them. But "12" before they get help when every teacher since pre-school has been pleading to Mom or Dad to do something. SAD. The students begin to treat the AS child as a sort of "pet" they look out for him/her but don't ever connect on a friendship basis. They don't go to parties, sleep-overs. Some kids never seem to mind, but others are acutley aware they are being snubbed. I work over time to help socialization and sensitvity. I tried to get training but since I am not ESE there wasn't any money. More needs to be done to assist front line professionals such as myself! I truly care for every student I teach and parents in denial is the biggest problem I have come across.