Whether to tell others or not?

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Our 7 year old had an AS diagnosis over a year ago. He is high on the spectrum - very bright, and the main differences between him and his NT classmates is that he is prone to loudness at times and finds it harder to interact socially.
We have only told about half a dozen people in our circle of family and friends. His teachers know on the understanding that it is confidential. At this stage we have decided to keep the dx to ourselves, but I am interested in others comments as to whether we are doing the right thing.
Our reasons are:
1. We don't want being given a "label" turning into a negative thing as far as other people are concerned.
2. Something makes me feel that our son has the right to decide for himself when he is older, whether he wants people to know or not, rather than us just making a decision to tell everyone and him having to live with it.
3. We are hoping that we can give him strategies to help improve his behaviour etc., some of which are working already, so that he "grows out of" some things or manages them better.
Most of the time I think we have made the right decision so far. But, everyone now and then I have a few doubts and wonder if it would help him more if we did tell? Dunno . . .

There are a lot of posts on here about people being stigmatized after revealing their diagnosis. The general concensus among people who have experience with this kind of decision seems to be that one should reveal the information on a need-to-know basis only, and expect that there could be negative consequences. In my opinion, since you're making this decision for another person, you might want to exercise more caution than if you were deciding for yourself. So your current decision sounds like a good one to me. But of course, I don't know your family, community, etc. I think it's a very personal decision--there are sure to be positive and negative consequences of whatever you choose.

I have been thinking about that lately. Our son started having physical problems when he was really little, so everybody already knows that he has been receiving therapy of some sort. So I feel like it is a little late, although not everybody is aware of exactly what his dx is. I do wish I could go back and keep a little more of it private, but at that point I was so confused and just looking for answers from whoever I could talk to.
If I could do it over again, I would probably not tell so many people.

This statement tells me that your son is very lucky to have such thoughtful and respectful parents!

My 14 year old daughter has just recently been diagnosed with AS. There were certain signals that were put in front of me to lead me to pursue this diagnosis. The final one was when Jenny McCarthy was being interviewed about her Autistic son on The View. When she mentioned "hand flapping" the lightbulb suddenly went on in my head and I began my research in pursuit of an AS diagnosis.

Prior to that, I seriously just thought my daughter was "quirky" and because I have always taught my children to embrace being different, and never just join the herd of "sheeple", we always celebrated her quirkiness. I was, and still am, quite proud to have such a unique child.

Since I didn't know until recently that her "uniqueness" was AS, I don't think anyone else needs to know. When people hear the word Autism, they stigmatize and jump to all sorts of uninformed conclusions. To me, this is private, medical information.

I haven't even told her yet, but I am gathering information and preparing myself to do so in just the right way.

This forum and website are a Godsend.

I honestly don't know how I feel about telling people about my son's AS... Part of me does want to wait until he can decide for himself (right now, at the age of 9, he doesn't really know he isn't an NT) . There's another part of me that wants the world to know how special and wonderful he is, and to PLEASE just accept him. After people see him go through a meltdown, they often give me the your-an-awful-parent look; in those cases, I have wanted to tell people to give him a break. Because my son is AS, he looks and talks like an NT. We fortunately live in a smaller town where most people who know us and him are very accepting. I'm not sure what the answer is; I like your ideas, and I wish we wouldn't have shared so much with certain family members who don't seem to understand him or want to. I suspect I'm an Aspie myself, and my whole being wants to scream out for acceptance by those who think I'm weird; I always say I'm "eccentric"--with a great big smile. Good luck:)

damn right. I wouldn't tell anyone.

btw, the assessment criteria says "The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning". So I believe that if you took identical twins, each with identical neurological function, and put them in different environments, one may get an assessment, but another's environment may be such that they do not show clinically significant impairment and so do not get an assessment. There are all types of personalities. Some find it easier to socialise than others. It sounds to me like your son will have a lot of support. IMO he does not need a label.

Thanks very much everyone! It has reassured me that we have made the right decision. I guess I worry too much that some of the few people we have told so far think we're nuts for being so secretive about it. In fact the RTLB teacher was quite pushy about wanting to hook me up with parent support groups and being a resource teacher for the area, and I was thinking, "What part of confidential do you not understand!! !" So, thanks for all your support and ideas.

My son is 10, I told him only after he was informed by his class mates in 5th grade that he was weird, freaky ect. I made a chart and we wrote all of the ways he was the same, then different. He came to the conclusion he likes himself just the way he is and he has a better imagination and a lot more fun being (wired different). I hope I made the right decision? He asked me if he was mentally ret*d? I felt I didn't want him to think that so thats when I told him. I also told him everyone is different and God doesn't make mistakes, he is perfect just the way he is. I also told him about the brilliant people and the art and invention they made because they were (wired different). He is satisfied with my answer.

i love the previous post's ideas the chart , and how God made him just the way He wanted him, that's what i tell my son. this is such a great place. i am struggling too with whom to tell and when to tell them if it is necessary. part of me wants to tell people so they give him (and me) a break, but i don't want the stigmatism and label.
i am also not too sure how to tell him about it because i don't think he really notices he's all that different. he's only four. i have had some people in my life who encouraged me to have him assessed because they worked and were familiar with the spectrum and noticed some stuff in him. i just thought he was a bit quirky with an amazing memory and gift for numbers. but i appreciate the diagnosis so i can begin to understand how to relate better to him and help him understand the world around him vs his world.
i do like the idea of letting him decide when he's older who to tell or not, but i guess the school has to know either way.

We are just in the beginning of the process of getting our daughter evaluated for AS. I was just wondering if anyone could tell me how long it takes? She'll have to meet with a child psychologist, but for how long? Anyone who
can share how it all works-I'd be grateful.

Regarding the above post, I guess that depends where you live and what the process is. I live in New Zealand and it took one hospital visit and a school observation (including interviews with the teacher and us) and that was it - so fairly quick.

I appreciated peoples comments about when and how to tell their AS child. I think I'm going to drip-feed the information over the next few years. We have another specialist appointment next week, so I think I will explain that we go to the check-ups because the doctors think that his brain works slightly differently, and then tell him all the good side of that (memory, good at maths etc.) and then explain that we need to help him with some things (social) and take it from there.

have you looked at "back from the doctor ...." http://www.wrongplanet.net/postt11525.html

There are some details of what was involved in the dx

Annie,

I guess I am the odd man out here. I think you should make your son's Asperger's common knowledge for two main reasons:

1. We only hide the things we are ashamed of. The stigma will come from this, not from people knowing.

2. When people don't know that your son is an Aspie, they will think his differences are a choice he's made. That will make people dislike him. When they learn that it is because of brain chemistry, it becomes a condition, not a choice.

We talk about my son's Asperger's in the same manner we would if he were a diabetic. Everybody knows. When he doesn't follow normal social conventions, most people understand. Otherwise, they'd blame him.

Either way, I wish you the best of luck.

have you looked at "back from the doctor ...." http://www.wrongplanet.net/postt11525.html

Thank you. We're new to the site and new to understanding our daughter's condition so I have a lot of questions.

I have to second you, Climber; your post explains exactly how our family deals with the issue, too. When you give people diagnosis information they become responsible for learning about you, not just assuming things. AS is nothing to be ashamed of and it shouldn't be left solely up to the autistic individual to do all of the accomodating. Yes, of course, we need to teach our spectrum kids how to get along socially and how to successfully function in the world such as it is, but they shouldn't have to hide who they are.