Tuesday, February 10, 2009

Do Aspie Children know at they are Different? - Part 4: Letting Your Child Know

There are at least three levels of recognition involved with the discovery that a child is different.

  • Adult Awareness
    This invariably seems to come first - from parents, teachers, relatives, other parents and doctors. Usually these adults have enough discretion to avoid talking about the differences in front of the child - particularly if the child is unaware of the problem.

  • The Child's Personal Awareness
    I hope that this series of posts has served to highlight an important truth - that the aspie becomes self-aware at a fairly early age. They won't know anything about aspergers itself but they will at least sense that they are different.

  • Peer Awareness
    It also doesn't take long for a child's peer group at school to begin recognising the differences and, depending upon the environment and levels of supervision, taking advantage of them and/or bullying.

To Tell - or not to Tell
There is a very real fear on the part of aspie parents with aspie children that to tell their child would be to change them. Our personalities are all heavily influenced by our experiences and unless we learn to cope with "who we are" by ourselves, there's a chance that we may never gain total independence.

The question is really whether it is possible to tell without losing this independence and without permanent damage to your child's self-esteem.

I can't pretend to know the answers to these questions. I didn't find out about my aspergers until my late thirties, by which time I was fiercely independent - most would say, too independent. It's too early to say whether the approach I've taken with my children was the correct choice or not.

I know a few people who were diagnosed in late childhood and early teens, who have major dependencies. Their self-esteem has never recovered from the implication (by parents and practitioners) that they were something "less than normal". Many of these people spent (and in some cases, are still spending) their teenage years as prisoners of over-protective or curebie parents.

When To Tell
It's my opinion that parents should let their child in on the "secret" soon after self-recognition and well before it becomes an issue. It becomes an "issue" when either the child becomes emotionally affected by their differences (eg: depressed) or when their peers not only perceive the differences but start actively taking advantage of them.

It is probably appropriate to tell your child around age six. This is young enough to avoid the self-esteem problems of unexpected revelation. Waiting until the teenage years to tell your child is possibly "cruel" and potentially self-damaging.

How to tell your Child
Of course, the most important thing about the actual telling is "giving them the correct message".

Here are my tips;

  • Find a real-life Idol
    Aspergers is a hereditary condition and as such, it shouldn't be too much of a stretch to find other aspies in your family - diagnosed or not.

    Try to find someone who has qualities to be admired. If they have a mix of good and bad, then be sure to concentrate only on the positives. Your child is going to find the negatives by themselves soon enough.

    Hopefully your Idol will be able to tell your child about mistakes they made, or things they learnt. Stories about embarrasing blunders that others have made can help to drive home the real meanings behind those confusing metaphors that NTs use. Certainly my own children will learn from my experience that "Bring a Plate" means, bring some food on a plate - not just a plate by itself.

    If you can't find a related aspie to suit (or even if you can), you should be able to point to one of the many self-confessed or suspected aspies who can easily be found on the internet. Obtaining a book like "Different Like Me: My Book of Autism Heroes" is also a good starting point.

  • Educate Others to be Positive
    Again, the most important message you can convey is "different" - not "worse". Your child and people around your child need to know that he is "wired differently" and that as a result, his learning and interaction styles will be quite different. Probably one of the best materials for achieving this is the book "All Cats have Aspergers". This book can be read in under 30 minutes and provides one of the best guides to how aspies feel and behave. It's equally suitable for parents/teachers and classmates though I'm not convinced that it should be used in a classroom to highlight a child's differences - that sounds a little close to discrimination.

  • Work "with" the Condition
    Parents, relatives and teachers need to become "evangelists" for the child. There are plenty of positives which need to be highlighted and the child will need praise/rewards when they successfully negotiate the negatives (for example; when they successfully control a meltdown).

    Your child's IEP should be tailored specifically towards Aspergers and in particular, it should use the strengths of the condition to assist in addressing the weaknesses. It is critical that you, your child and your child's teachers recognise these strengths. An example of this would be a greater reliance on visual and experiential learning - aspies remember events and sequences better than facts. It's well worth using historical and science programs on TV to your advantage in this regard.

    Then there's the special interest. It's a major driver of aspie behaviour and learning. Allow your child to read and write about their favourite things. Don't worry that they're stuck reading only a single genre or series but instead seek to find more complex materials that bear a passing link to the special interest. That way, they'll keep learning and their special interest will drive that learning.

  • Maintain Positives
    Above all, you must always maintain the positives. Your child should be encouraged to give things a try but on their own terms. For example; they should be sent to get things from shops under minimal supervision. The only way that they're going to learn about human behaviour is to be exposed to it - both good and bad.

    If your child makes a mistake during play or conversation, teach them how to "fix it", how to apologise and how to regain lost friends. You'll also have to teach them when to "cut their losses" with regard to unreliable friends. One of the worst things you can do is decide that having friends is "too difficult" for them and keep them locked up away from friends.

I don't think you should stop merely at "being positive". Instead, you should teach your child to be proud of their condition. My eldest has already pointed out some of his abilities to his teachers when praised. Reportedly saying; "I can do this because I'm good at it. I'm an aspie, like my dad". That's the kind of attitude I like to hear.

15 comments:

Anonymous Ghost Writer said...

Firstly, permit me to say thanks for your work in these past few posts. This is a dificult subject and I believe that you have given a very even keeled and unbiased view.

Like yourself, I can only state things from my point of view. However I would suggest that where a real life idol is sought that the parents not only concetrate on the possitives but also allow the child to see the negatives, without dwelling ont hem. I believe that this will give the child a more balanced view of the road ahead.

I, myself, have a rather bad habit of being a perfectionist. If someone is held up as a shining example of what I could be and I fail to achieve that status I can become very dispondent. While having an idol is no doubt a good thing for a child this idol should not be held up as faultless and pure because as the child grows and fails to achieve the percieved level of thier idol it can work against them. Instead an idol should be looked on as a person, with faults and flaws, but someone who overcame them and became stronger for it. I believe that this is a better way since it shows that while the idol is someone to be looked up the path they used to get there was not an easy walk in the park, in essence perpairing the child for the raod ahead.

Just a thought though.

Gavin Bollard said...

Thanks for the comments. You're right that we shouldn't try to hide negativity. I guess my intentions weren't terribly clear in this regard.

What I'm trying to suggest is that when choosing an "idol" that parents avoid people with drug problems/dependencies or major lifestyle issues. Minor flaws, are to be encouraged as it makes the idols more "human".

Rachel said...

Maybe a better term than "idol" would be "positive role model"--someone who has overcome difficulties and has a great deal of wisdom to show for it.

Gavin Bollard said...

Thanks Rachel, "positive role model" is a more appropriate term; not only because it's PC but also because we want to discourage "blind following"

Becca said...

As far as when to let your child know---sometimes I think you have to let them know to protect them. In our case, our child had been diagnosed at 7 with Aspergers, but we didn't really have deep conversations with him or flat out tell him he was different until a year later when his academic performances were becoming less than perfect because of a teacher who relied heavily on neatness and speed. All of the sudden someone who has always excelled academically was falling behind and he was beginning to feel stupid because he could not process his answers fast enough. This year we have talked with him a lot about how he is an Aspie and how his brain just "works differently" and that he is not dumb in any way, just that he processes differently. It has been a wonderful help also by the realization of my spouse with Aspergers that we can easily have them relate together. My son knows he's different, but he's proud when I say "different like dad" and he knows dad is smart and wonderful and that doesn't make him bad at all.

I think the hardest parts come with not knowing that you are different, but how you're going to get through the differences. Right now it is school in particular. We are working right now to set up an official IEP to hopefully make his teacher grade better by knowledge rather by timed performance. I don't know exactly how or what we will do.

Is processing delay a normal thing for Aspies? My husband and my son both have quite a delay after I ask them a question before they can spit out an answer.

Gavin Bollard said...

A processing delay is very common amongst aspies. When people speak to us, we have to;

1. Receive the noise

2. Filter out the backgrounds (we don't naturally filter backgrounds like NTs)

3. Hunt for hidden meanings/alternative meanings

4. Formuate an answer - often using sequential memory

5. Reply

There's sometimes an attempt to translate tone/expression but usually we're out of time and can't do that. (and we're not very good at it anyway).

I'm surprised the delay isn't longer.

Claaire louise said...

Hi you don't know me but i have been reading your blog for a few months now. I have a blog a boy with Aspergers. I won a award called the lemonade award. I was given the chance to pass the same award to my top ten blogs relating to ASD. Your on of those ten:) Please pass by A boy with Aspergers and collect your award. http://aspergersinfo.wordpress.com
Thanks Claire Louise.

Casdok said...

Definetly educate others to be positive. Super post.

Sminthia said...

Wonderful post and wonderful blog.

I told my son while we were watching a documentary about the life of Albert Einstein. Talk about your role models!

What do you think about telling peers, either individually or as a group? In 5th grade, my son "came out" to his class and that seemed to help. Now that he is in 6th grade (Middle School)and has much more severe bullying problems, I wonder if "coming out" would cause more problems.

Gavin Bollard said...

Sminthia,

Wonderful choice of timing - well done. Giving your child a chance to watch TV programs about "heroes on the spectrum" is a great idea.

As far as peer disclosure is concerned, there are a few good rules.

1. If the condition is seriously affecting the way your child works or plays, then you need to tell.

2. If you can avoid it, try to wait until his peers are a bit mature... say year 10 (in Australia, that means aged 16).

3. If you can't avoid disclosure, it might be better to tell best friends rather than "everyone".

Unfortunately early disclosure can lead to a lot of problems. Sometimes schools unintentionally create a "remedial effect" which impairs a child's learning.

Sometimes closed-minded parents of other children will suggest that their child not play with children who have a condition.

Often other children will pick up on the disclosure as an excuse for bullying or will try to take advantage of your child.

Sminthia said...

Thanks, Gavin. Great ideas.

I'm in a unique situation as far as disclosure. I have a novel for young people coming out (http://jjhoutman.livejournal.com/) and it's told from the point of view of an Aspergian science whiz with a bully problem.

Many people will assume that the main character is my son, which he isn't (although there are a lot of similarities). Marketing folks have told me that I should place myself as an expert and, aside from being a science writer with a PhD in science, my family makes me somewhat of an Asperger's expert. ("You have to live with it to write about it.")

I'm torn about bringing my family into the marketing. On the one hand, it "outs" us. On the other hand, Aspie cred will help get the book into the hands of kids who need characters with whom they can relate.

Your perspective on this would would be appreciated.

Thanks!
Jacqueline (aka Sminthia)

Anonymous said...

I am in my thirties. In the last couple of days I have had a shock. I have realised that I and some of my family show some minor signs of Aspergers. I am upset about this. Aspects of my personality that I thought were me, now appear to be part of a syndrome. I don't think I'd actually qualify for a diagnosis of Aspergers, I think I am some way from that, but my point remains the same, and I am pretty upset.

Anonymous said...

I am the Anonymous who posted at February 20, 2009 4:38 AM.

I now think there is no doubt that I and my family definitely have Aspergers, and although I was very upset at first, my life makes a lot more sense now than it did before.

Anonymous said...

Right now I am in 8th grade, going into 9th. I learned I had Asperger's in 6th. At first I was convinced I was a freak, just because I heard 'Autism'. There is so much media in America and around the world that if you have autism you are an idiot, worthless, and can't amount to anything, at least that is what I precieved from others when they even mentioned autism. I thought I was just stupid and gullible(whenever anyone cracked something about gullible being written on the ceiling, I always looked up). People would always tell me to think before I act, and that I had a real problem when it came to anything related to science, magnets, computers, and science fiction.

I was told what Asperger's was by a very nice special ed teacher, luckily I went to a school that paid a lot of money and attention towards an autistic program, though there was only one person at the time who had autisim with ten of us that had Asperger's. One of the helpers(we just didn't know what else to call them, maybe assistants?) pointed me towards a book, and then I actually became proud to have Asperger's. I always felt smarter than everyone, or that I thought in a different way. I also became less depressed about it when I learned that one of my heroes, Albert Einstein, could have possibly had it. Now I am very thankful to have Asperger's and sometimes feel sorry for people who don't, because they might never see the world like I do. Also, being social is much easier with fellow Aspies, and over stuff like MMOs and Xbox Live, where you don't have to read body language or make eye contact, you can just have fun!

Thank-you for these posts, and all your others!

randomhumanfemale said...

You...you! You talk like me! You talk like me! You are boring and pedantic! Extremely boring and pedantic! About childhood memories of social interactions! People probably fall asleep listening to you! And...and...you talk like me! Or at least you write like me! This is awesome! I bore people all the time! Like, ALL the time!

I love you!

Sorry. But...like, yeah.