When to tell

A topic I seem to see a lot of on various autism communities comes from parents wondering when they should tell their child that they are on the autism spectrum. Frequently I see parents expressing fear that if their child finds out, they will use their diagnosis as an excuse for bad behavior or for not trying.

Now I am not a parent. Since it’s generally considered uncool for non-parents to give parenting advice, I am not going to do that. Instead, I want to talk about this topic in speculative terms, of how knowing the word/label may have impacted me when I was young, if I lived in some fantasy universe where Aspergers was adequately known in the US in the 80’s.
This is actually kind of tricky. As I’ve mentioned, I was aware that I was different as early as kindergarten. I may have been young, but children are often more aware of things than adults seem to give them credit for. I was not aware of why, or what to do about it, or how to cope with it, but I knew that differences were there. Learning that I was an aspie probably would have had two basic and distinct effects on me.

On the one hand, it would explain my difference. Technically, adults probably would not need to use the actual word to find ways to explain what’s going on in age-appropriate ways, but it would probably help. I find it useful to have words and labels on things. It might have aided in my understanding of myself, with significantly less feeling that I was flailing around in the dark that I lived with for so long.

On the other hand, being different was distressing to me. I wanted, so badly, to be like everyone else. Learning that I was on the autism spectrum would mean an early death to hopes that I could eventually be normal. While in the long run I learned to accept, and even cherish, my differences, at the time it was terrible. I imagine it would have been depressing to learn that I was stuck being different.

Which means, I think, a lot of how telling me would have gone (again, in this mythical universe) would depend on how the adults around me treated it all. If my differences were treated entirely as deficiencies and problems, my reaction probably would have leaned heavily towards distress. Not only was I different, not only did I feel bad about being different, but I REALLY WAS bad because I was different! I imagine it also would raise the risk of my using the label as an excuse. I mean, here I am, all full of differences that are actually deficiencies, surely that means I am less than everyone else.

But then, maybe the adults in my life would have made a point to say that my differences were just that, differences. Maybe they would have pointed out that there are good things that come with it too, and that it means that while I will struggle with some things, I also have particular abilities. That while I was different, I was not in any way less than the people around me. I have no doubt I still would have struggled with it all, but I imagine it would ultimately have made things easier for me in terms of understanding and accepting myself.

Overall, I am in favor of informing children when they are old enough to notice that they are different. And, obviously, I am in favor of not treating it simply as a disorder or problem, but as something that comes with both problems and benefits. It is impossible to predict how any individual will react to that sort of news, but I like to think that parents have some influence on how their children will ultimately process information. If you are convinced that different does not equal less, it’s probably more likely that your child will accept the same thing.

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3 Comments

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3 responses to “When to tell

  1. Tricia

    Coulda, woulda, shoulda do open up a rabbit hole of possibilities.

    But I’ve also wondered what would have happened if I was told what was going on. My need to fit it was so great, and the kids I went to school with were so mean, that I probably did more damage to my self-esteem and the like than knowing why I was different. I couldn’t fit in, because they couldn’t fit with me – but it was 12 years of hell before I escaped.

  2. Angie

    Very enlightening. I totally agree it depends on the approach the parents use with the child but also their personalities. I have two daughters who in 5 and 7 grade were given diagnoses. My younger daughter with ADHD and my older with a mood disorder during a major depressive episode.
    My younger one didnt seem to care at all. But i think now because she doesnt know how to apprpriately express emotion and internalizes and avoids it at all cost. She did ask me though during that age why she was different. I told her because we are all unique, with special gifts and God made us that way… cause the world would be pretty boring if we were all the same ( i didnt know what else to say). 3 yrs later after only her grades and ability to focus seemed to improve but her behavior, tantrums, outburst got worse did her doctor say she had a mood disorder also and we added to her meds. Since she had a strong desire then to have more control on her outburst she readily accepted the explaination from mom that sometimes our brains dont make the right “stuff” and the meds will help her. It did. But eventually her behavior got worse and she was being physical with others and herself and she went into partial inpatient treatment where her adhd meds were switched to an antidepressant. It helped tremendously. She was even able to say she didnt feel irritated or angry all the time and equated that with “happy” She is still very oppositional and difficult as she is argumentative. her Drs want to test her for Aspergers since mild forms esp. in girls can b overlooked. When i talked with her about it. She just looked at me and laughed because she said my lips looked funny. I dont know what she really thinks because at present she says she likes being different but denies that she has any condition except her adhd (maybe because it is more of an acceptble disorder in todays society). But will go around and show people her scars from hurting herself.
    Quickly , other daughter is embarrassed by her depression and mood disorder and tells people she takes meds ( if they find out) for various reasons. She is very vocal and can articulate whenever she feels a change in her moods but has sadly expressed in the past that its so unfair and why is it harder for her to be happy than others ( breaks my heart)…when she did hurt herself once she was embarrassed and hid it for months. Kids are different and need love patience and understanding and yes i think the truth.

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