Saturday, May 9, 2009

The Human Side of the Aspergers Diagnosis: Part 3 Telling Others

A Quick Recap
Thus far, we've looked at the effects of an aspergers diagnosis on parents (of younger children) and on the Aspies themselves.

In this post I want to look at how other family members, colleagues, teachers and friends react.

At a very young age, there is little reaction from siblings towards the diagnosis and its effects. Any young sibling reaction tends to be directed towards the perceived "differences", not the label.

This begins to change as the affected child grows older and gets more "special treatment". Its common for mothers to "baby" their aspergers children and this can cause resentment with siblings.

If a diagnosis is revealed to a sibling at adulthood, the result is often denial and dismissal. This is similar, though often stronger than the similar reactions expressed by parents when their adult children receive a label. Older siblings often consider the label an attempt to "get more attention" or a personal attack on their genetics.

Teachers invariably respond to the diagnosis with "over-simplification" and an underestimation of ones abilities. There is often a degree of irritation and/or sympathy thrown in for good measure.

The worst problems arising from these reactions tend to result in children being placed in "slower" remedial classes, given over-simplified work and generally being mollycoddled for no good reason. Such treatment can often impair a child's academic chances.

The irritated reaction is also problematic and many teachers who simply "do not believe" the condition either make it a personal crusade to get a certain result from the child or otherwise make every effort to remove that child from their class. I have seen instances where labelled children who are considered to be a "disruptive influence" are sent out of class or allocated a special desk simply to keep them out of the teacher's way.

Like all people, teachers have varied reactions. Regardless of the policies and tolerance of the school, not all teachers are suited to special needs students. Parents should pay special attention to each new teacher's performance at the beginning of the year to determine whether the most suitable invidivuals are teaching their children.

Colleagues and Friends
Before revealing your "label" to people who don't necessarily have a need to know, you need to carefully consider what you expect from the reveal. You may be expecting sympathy and understanding but how exactly do you want it manifested? Do you just want your boss to be understanding when you feel anxious and need to leave suddenly during the day? Do you want them to feel sorry for you? Do you want them to keep you out of meetings whenever possible?

Your boss needs to be productive too and depending on the size of the company, he or she may ultimately need to be responsibile for its productivity.

You need to carefully consider the reasons for the reveal and decide first whether or not the boss/company can "afford" your concessions. If they can't, then telling them can often be the quickest route to the exit.

If you feel that your boss will be able to provide the concessions you need, then don't just stop with an explanation of your condition. Tell your boss what would ease your "pain". It may be as simple as "don't expect a lot of eye contact but know that I'm listening". You may feel the need to mention specifics like how sometimes you need to shut your office door to drown out excess noise.

The other thing to consider about a workplace reveal is; who should know. In the workplace, news travels fast and even though you've hand-picked the people you want to tell, the chances are that soon "everybody" will know. If you are having issues with a particular employee or if you feel that you may be harrassed as a result, you should either withhold the information or reveal only under private, controlled and documented circumstances, such as a Human Resources meeting. Even then, you should make it clear (and have it noted) that you do not want the information revealed outside of the meeting participants.

Sometimes, a reveal with friends or colleagues can have very positive effects and an older, more experienced (or more confident) person can take you under their wing. Such "protection" is very useful and you should think twice before brushing it off. In every job I've worked in, I've always found such protectors. They do things like discreetly nudge me when I'm taking things literally, showing a lack of empathy or otherwise committing social "sins". This usually enables me to correct my mistakes and avoid the worst of any backlash.


Beastinblack said...

Take my advice dont tell anyone at work. you just cant trust anyone.

Damo said...

It depends on the job. Whether its a technical or manual job. It also depends on your level of interaction with both staff and public.

At the end of the day you can only go with your gut or instincts.

For me, being in the technical field, it is a higly prized skill. I'm just managed in such a way to avoid "sensitive meetings". Otherwise they give me the plans and let me "do my thing" and I'll pull it to shreds. I see what they do not and join the dots in a manner that they do not concieve.

As for the mother ducks, I've also found them. But as I get older, I find that I don't need them as much.

I have and haven't told work. To the masses I tell them I "go rainman" on stuff and they're happy with that. For the managers, some know but I'm fine with it.

I have turned a social awkwardness into an extremely valuable company tool.

Rachel said...

I'm finding that there is another category of people to whom disclosing is an issue: the local community. My Aspieness is such an important part of my identity and experience that it feels wrong to keep it invisible. Plus, I'd like to let other Aspies know that they're not the only ones in town.

To this end, I've asked the editor of one of the local papers if he'd like me to write a column or two on living with Asperger's. He was very open to the idea. I've also ordered an Aspie Pride T-shirt and bumper sticker. The next step is to actually wear/display them in public. ;-)

Dean said...

I just discovered your blog, it's a relief to know I'm not the only one like this! It has encouraged me to start my own blog.

Anonymous said...

I've just come across your blog, and am finding it very helpful, illuminating even. You and your readers may be able to advise me. My 6 year old son has just been diagnosed with Asperger’s, Dyslexia, & ADD. The diagnosis is helpful in that it will allow us to push his school for appropriate assistance. However, I’m not sure what to tell him. He knows he’s a bit different, and is beginning to question all his appointments, not in a hostile way, but curious. His younger brother (4.5) is also asking questions, as he gets taken along but isn’t allowed to do any of the fun stuff.
At the moment, he is a gentle, charming, intelligent, articulate kindergarten boy with some quirks. I am not sure that we have identified any obvious strengths that stem from the Asperger’s, and the Dyslexia and ADD are making academics difficult at the moment. I’m thinking of telling him that he needs extra help with reading, because his brain sees things differently, but I’m very leery of telling him about the Asperger’s, because he will go around telling all and sundry that “I’m not good at …(talking to people, getting dressed, sitting still, playing with kids, eating, whatever…) because I have Asperger’s”, and thus opening up a whole new area of anxiety, despair & possible teasing /bullying for him. Thoughts?

Gavin Bollard said...

My eldest (8) has aspergers and ADD. Technically ADD doesn't exist, it's called ADHD now - even when they're not hyperactive. We rarely use that label because it paints a worst picture of the child than Aspergers.

There's no medication that is effective against Aspergers, given that it's a "wired differently" condition rather than a dysfunction. The ADD/ADHD comorbid however can be treated. After a lot of soul searching, we started with Ritalin. It has the least (and safest) side-effects and the largest amount of documentation (over 50 years of live trials).

We were concerned when the medication was increased after six months by the doctor to compensate for a minor weight gain but since then it's actually decreased and it is now half of the original dosage. We only medicate when there's learning involved (so aside from tutoring, not on weekends or school holidays) and have always stressed that we want him to be able to control his own behaviour without medication. To his credit, he is trying very hard.

He has always known that he has Aspergers and we often talk about what that means. He is never told that it means that he's not good at things. Instead, we tell him about the strengths of the condition and how to lean on them to help himself. For instance, he's aware that he's a visual learner and will often ask to SEE things rather than just hear about them.

He's not a "little professor" and in fact his reading level is significantly lower than the median of his class. We offset that a bit by talking him through "educational situations" and having him watch TV and movies which showcase things that he is supposed to be learning about.

At this stage in his life, he's a very happy and well adjusted boy who gives as much as he is able academically. We can't ask for more than that - and we're proud of him for his efforts.

Lindsey said...

I just came across your blog, and initially found it fascinating because I have always tested high on aspergers/autism spectrum tests online, and certainly identify with many (though not all) of the characteristics. I don't know if being female complicates my self-diagnosis, but knowing for certain if I am or not doesn't seem critical to me at this point in my life either.

However, I am also a new teacher, and will begin my first year of teaching high school English this fall (I know, an unusual career choice considering, but there are aspects of both the subject and teaching in general that I enjoy). Do you have any advice or any recommended resources for teachers of students with aspergers or who are on the autism spectrum? Of course, I can look back on what worked and didn't work for me as a student to inform my teaching (as well as the less-than-helpful special needs training I received for my education degree), but I'm not exactly a representative aspie, if I even am one, and as you have your own experience, the observations of your children, and the research you've done for this blog, I'm guessing you're more qualified to speak to the issue.