Wednesday, February 25, 2009

Article: When should I tell my son about his diagnosis of Aspergers?

Hot on the heels of my recent articles comes Dave Angel's take on the subject;

When should I tell my son about his diagnosis of Aspergers?
by Dave Angel

I get the feeling that Dave supports the idea of telling children in an age-appropriate manner. He also cautions against the self-image issues which can arise from allowing a child to think that they are "defective".

It's critical that if and when you do tell your child, that you make the experience a positive one.


Dragonella said...

its a well written article, but I have one thing to add. I am an "Aspie" and only was recently diagnosed. I found out mostly on my own before I got tested. it is important to tell your child if they have aspergers, if you don't, they will end up like I was, frustrated at everything and not understanding why I am different. its important to tell them that they are not like other kids, but tell them also, that they have special things/characteristics that other kids don't. It helped me to understand a bit better why I was going through certain things in my life. yes, I agree with the age thing, but don't leave it too late, and the age thing depends on the person. some kids are very mature for their age, and hide it, like I did. I acted very immature for my age because I just wanted to fit in, even thought I knew what I was doing was stupid and immature. I am actually very mature for my age, and have learned to cope with aspergers on my own. mostly...

SavedAspie said...

I think it's important to tell children when they're old enough to understand, but I also agree with the concern of the child subsequently feeling "defective." At 7, the child probalby doesn't feel too different from other children. I didn't at 7. In fact, though I felt sometimes lonely in high school, it wasn't til my senior year in high school that I realized something was "wrong" with me. That was tough, and college was tougher. And I think knowing about Aspergers would have helped. Had anyone known about it back then.

I hope you don't mind, but I springboarded this topic and linked to your blog in my blog:

pink said...

SavedAspie has a good point, but I would caution against telling the child too late. I was told when I was 14, but by then I had not only realized I was different from other children, but I was being bullied due to these differences. Being told of my Asperger's was both eye-opening and a little sad, because all I wanted to do at the time was to fit in, and the news of this counteracted against that.

I also don't think it was presented to me in the most positive light - I had to do research on it later on to learn of the good things about having Asperger's. All I heard was, "your visual perception is better than most people's, but you have a whole slew of shortcomings you need to make up for." Due to what I was going through, I was blind to the wonderful aspects of having Asperger's Syndrome that everybody must be aware of in themselves.

So, perhaps my experience has a little bias based on my personality and skewed perspective, but if you are a parent about to tell your child of their Asperger's, I would make sure it is during a time where they are as emotionally stable as possible - 8-10 years old may be a good time for this, before they are in middle school. It should be stressed as a neurological difference that makes them wonderful and unique, instead of a disability. I agree with the article - don't wait too late, puberty is a hard enough thing to deal with. Because I was told of my diagnosis at such a late age, I saw it as the thing that was holding me back socially, which is unhealthy. Unless they learn of their Asperger's at a later age, I don't want other kids to go through the same thing as I did.

Becca said...

Yes, it's very age-dependent on when you tell them. You don't want them to feel "defective", but at the same time, you don't want it to be the other way around before they know. Like what happens when they do feel defective before they are told of the Asperger's. I have seen it both ways. My husband newly diagnosed tells me that he felt like an idiot most of his life and a failure. He didn't figure something was wrong with him as a diagnosis type thing, but he just figured he was what was wrong, and in turn lived too many long years in pain and sorrow. My son, recently turned 9, we told him 2 years ago to prevent the "I must be dumb or not as good as the other kids" syndrome. He openly accepts it and clings to it as his very proud connection with his dad who shares the same way of thinking.

Sminthia said...

That "defective" label is pernicious.

It even permeates the scientific literature:

Anonymous said...

I'm a grown woman. Like Dragonella I was also frustrated by everything and didn't understand why I was different. Since coming to understand that I have autistic traits (I don't know exactly what my condition is. I worked it out on my own after a close relative was officially diagnosed.) life has become much easier. I do feel very self-conscious about it, but at least now I know I'm not mad or bad.

Anonymous said...

My boy, only 4 years old, was diagnosed on about his 3rd birthday. We have never kept it a secret, and he knows he's different and always wanted to know why he was different since age 2. He recognized he was different himself, and kept dropping out of preschools with severe social anxiety, not to mention nervous boughts of running in circles, hand flapping, curling up in ball rocking, crashing into people, or just hiding under chairs or tables. It makes him feel better that there is a reason, and that he is indeed different.

We started medication Tenex this last week, and it is taking the edge off his anxiety and he even says he likes the medication. It is helping with his impulse control, and he seems to focus and think now before he acts like a neurotypical kid (I'm like - "Is that my son?"). It didn't change his behaviors, it just is calming him and allowing him to focus more before he acts. We have many Asperger's people in my family, equal number girls to boys - some very social, but always going off topic in conversations that are usually one-sided, but they are still curious about others. We have social and anti-social Aspie's in our family. I am myself a "loner" but of course always wanted to be "popular", but I am married thanks to, with kids, but only one friend who is a "special interest in common" friend who lives on opposite coast. Asperger's people in my family sometimes just gave up on the social stuff and became loners after years of teasing, but will talk your ears off if give them a chance.

I think it's best to know as early as possible why you are different, and it's OK, and medications and therapies can help, and have saved others in my family that rely on Paxil - sister, Tenex - my son now, Risperdol - my father at nursing home, biofeedback, yoga and 3 hours at gym - brother, massive amounts of Potassium supplements - uncle, Ritalin - nephew, cognitive behavioral therapy - myself, etc. I had to learn eye contact, learn how to listen (could NOT learn in school with auditory lectures, only visual materials), learn how to not get teased, and now at 45 trying to learn how to make friends, and how to conduct 2 way conversations without being negative and boring. I think it's best to accept your deficits, and tackle them head-on like a project. I did, and still am positive about moving forward. There is still a low level of melancholy that I accept, as I do have to endure more challenges than others, but at least it's not bipolar disorder, as that is a very difficult comorbid condition.

Now I've come a long way, and have many skills today. I still can't keep a job more than 6 months due to always tending to do a few "unauthorized" things, and not communciating enough with boss, but I am still working on these skills and moving on. A support group is great. We have several groups where we live, and the school district has done tons of early intervention for my son - with amazing night and day results. Our last IEP added Occupational Therapy social skills group, using sensory integration therapy. There are things we love in life, and our special interests, so we are overall happy and enthusiastic to start each day. -- 45 year old mom of Aspie boy

Jared's Mom said...

My son is almost 12 and in Sixth Grade. He was diagnosed with ADHD first (as a preschooler) and diagnosed with Aspergers at age 8. We have never kept it a secret from him. We also have never presented it in such a way that he thinks he's different from the other kids. It's just who he is. Our 2 younger children are aware also. They think it's totally normal. We want Jared to advocate for himself and we don't feel he could do this well without all the info. It seems to work for us.

The up side to our approach is that my 2 younger children are both "peer supporters" in their classrooms. They are both kind and patient with kids like their brother.

Leslie Ronald Howard said...

Asperger's was a recent diagnosis for me, and a great gift. It explains A WHOLE LOT.

It don't matter when you're diagnosed, but you should know about it.

20-something-year-old son is a scientist with social anxiety to beat all social anxieties. What are the chances?

Seriously, it would have been great to have known as soon as I could make independent adult decisions and before I attempted suicide from all the anxiety.

It's a great gift. Don't hold back. Be sure to remind the child of his/her potential for creativity beyond the norm.

Anonymous said...

Well, I had a different opinion before I have raed your post, but I think I will change it now, cause only "The foolish and the dead never change their opinions."

Anonymous said...

I watched a telecast on this issue, and I have found out the same information. Anyway, thanks.

Compgeek1995 said...

The link is broken.