To tell, or not to tell

Post Reply New Topic

I'm interested in hearing thoughts on this one. On the one hand, the fact that my 4 yo son has AS is absolutely nothing to be ashamed about and may even be something to celebrate. To keep it a secret almost implies shame and I never want him to ever feel as though there is something wrong with him. For lack of a better comparison, you often hear homosexuals say how much more free they are to be who they really are when they admit who they really are. The truth can be liberating. People pass judgement either way and perhaps making Asperger's and Autism more public will help to reduce ignorance.

On the other hand, why should my son be responsible for educating the public? He may become more vulnerable to those who are ignorant and may be ostracized and held to lower standards than he is capable of achieving. Either way, it becomes a burden not because of who he is, but because of what others think.

I know that many of you will say to wait until he is old enough to decide for himself who is allowed to know, and who isn't, but I'm afraid he will jump to say don't tell anyone and then go on to internalize all of his problems.

This is something we are currently dealing with as my husband has Muscular Dystrophy, but is not yet in a wheelchair. He was diagnosed 4 years ago and has yet to tell anyone outside of family. He is scared, mostly of losing his job if his boss finds out, and it is heartbreaking to watch him struggle and keep all of his pain and fear to himself. I fully understand the practical reason for not disclosing personal disabilities, but at what cost. In many ways, his life would be much easier if he would just shout it on the rooftop, but of course I respect his decision.

What if my husband knew he was disabled his whole life and never had the burden of keeping it a secret? Would he be living a more authentic life? Would more people be aware of those with disabilities and learn to draw different conclusions? Could my son benefit from a life where AS was all he and his friends had ever known? This is a big deal and I think this window is closing in on us fast, as my son is a very bright little boy and has started noticing differences between himself and his peers.

All thoughts are welcomed and appreciated.

This is a hard question my son clearly has autism and hates when someone asks about him or we talk about it in front of him. He's nine and it might be the age. Other kids at that age can be very blunt if they ask you or your son about why he's doing XYZ you guys might want to sit down and thing of a way to explain it that your son is comfortable with. If he's rather not tell anyone it's realy his choice. But he should never feel like he should be ashamed of who he is in anyway ever.

Well I would definitely tell your son.

You dont need to go into the full explanation at this time. Talking about doctors, and labels, and all that can wait till later. But for now, I would tell him that:

1. Everybody is unique and has their mind work in a different way. No two people think exactly alike. You think differently then he does, his father thinks differently then you, etc.

2. Nobody's mind is any better or worse then somebody else's mind. Some people may be good at math, some people may have difficulty with it. Some people may be good at talking, others may struggle with it. Since everybody has a different mind, everybody will have their own unique set of skills and challenges. But that doesn't mean that one person's mind is better or another's mind is worse. Everybody is equally valuable, not because of what they can and cannot do well, but because they are all human.

3. Certain people have similar thinking styles. While they are not exactly the same, they do share some things in common. There are some groups of people that think in certain ways, and other groups of people who think in other ways. One group is not better then the others, merely different. It is like cats and dogs. Each and every dog is unique. It has it's own style of fur, its own size, its own unique personality. Likewise, every cat is unique. It has it's own size, and shape, and color pattern that no other cat has. But even though each creature is unique, you can group them into somewhat similar categories. For example, you can determine what is a cat, and what is a dog. This doesn't make them any less unique, these are just very broad categories.

4. Your son happens to have a mind that belongs in an rare category. His mind operates differently then most people's. Like being a cat in an area with a lot of dogs. It isn't a bad mind, just merely different then others. There is nobody who is exactly like your son, but there are other people who are similar to him. Its just that people like him make up a very small portion of humanity.

5. While there is nothing wrong with being unusual, it can make interacting with other people tricky. Just as a cat and a dog have difficulty understanding each other, so your son might have some difficulty understand people with the normal, less rare, minds. Tell your son that you can help with this by explaining in some ways how other people think. And that you are available if he has any questions about the normal people.

That should be about all you need to tell him for now. There is also a book called 'all cat's have asperger's syndrome' which is aimed at explaining AS to the child in a way similar to what I said. I think it is aimed at slightly older children, but you might want to give it a read over if you find it at your local library.

As far as telling other people about it. That is up to your son. Let him decide who to tell. If it is important that another person know (for example, his teacher) then tell them (and let your son know that you old then, preferably in advance). But ask them not to spread the word around to other people, especially the other children. If your son wants his classmates to know, then that is up to him, but dont go telling everybody for him unless you absolutely have to.

Tracker's advice makes good sense.

I would add that I would not use the label, Asperger's, in discussion with your son unless he starts having serious problems and this would help or be necessary in dealing with them. I was raised a long time ago without a diagnosis or label, even though I was champion flapper until the age of at least 10, and I am convinced that I am better off for it. I went on to do very well at university and had a very successful career. People knew that I was somewhat different, but nobody (including myself) thought anything was "wrong" with me. Remember that according to DSM IV, Asperger's is a "disorder", and there are many AS stereotypes floating around.

My son is also definitely has AS, but this was never discussed directly with him because I was afraid that it might damage his confidence and self-esteem. He is now completing his PhD at a young age, so I don't regret the decision.

this very subject is one of the main reasons I signed up here to discuss. I am utterly torn over this question. My son is 12 years old and I just dont know whether to have this conversation with him. I have read so many pros and cons. It is such a difficult call to make.

Anyone else got good/bad experiences?

My son is aware of his diagnosis and I think its been positive for him. It isn't something we dwell on, and we rarely use the term, we mostly talk about how his brain works differently. By the time we entered into the diagnosis process when he was 7, he was quite well aware that he was different from other kids. Our kids are smart enough to see this and, for him, having the precise explanation was a relief. He likes knowing there is a name and that there are lots of other kids who are like him, so that his experiences are actually quite "normal" for someone like him. He clearly sees his gifts, and he sees most of his burdens. I can't imagine leaving him in the dark on any of it. The facts are better than what his creativce imagination would have come up with, and I assure you he would have come up with something - he always finds an answer for his own questions. Knowledge is power, and if we keep knowledge away from our kids, we deny them that power. Its all how you present it, and how you've discussed things up to that point.

This kind of thing is a personal choice with no real right or wrong option.
I'm very open about being an Aspie, but when I was first diagnosed I didn't tell alot of people. The schools knew as did my family and some peers but it did take abit for me to fully accept it and let others know. I have a friend, who at 5 was completely open about and contant with having Asperger's Syndrome. It depends on the individual and how they feel at the time. Personally I think being open about it is best if your comfortable with that as it can help other's understand you better.
If or when you do deside to inform others of a diagnosis, particularly on a large scale, make sure you do so in a way that explains the disorder, how it effects you (or your son in this case) and some possitive things about it or strengths that he has. Don't overfocus on the bad. Remember, there is nothing wrong with being different, everyone is unique, and a diagnosis isn't a punishment, label or reason for shame/guilt. Let your son have a choice too. He should be aware of his diagnosis and determine what he feels is best for him at the time. After all it's his life and he has to live it.
Good luck with whatever you deside.

My son was diagnosed when he was 8 y.o. We didn't tell him immediately - we waited until it was fairly clear that he had a sense that he was different from his peers, and then we gave him the information he needed to understand it, including the name. Years ago, that would not have been possible, since Asperger's is a relatively new diagnosis. We also gave him the book Asperger's, The Universe and Everything by Kenneth Hall, who was 10 y.o. when he wrote the book. Our son loved the book and found it wonderful - he was really able to relate. It gave him a sense of not being quite so different and strange, even though there were many ways that he was different from Kenneth. I don't think that telling a child about having Asperger's needs to be providing an excuse for not doing what he needs to do. It's an explanation for his difference, for why some things seem so different to him, and also for why he may have some significant strengths. We tried to use it as an explanation for how his mind works, much as some people are good at art or at writing or at sports, and others have difficulty with some of those same things. We used it more as an explanation of how if people have this particular constellation of strengths and needs, they have a name for it, and this is what it's called.

wow I wasnt expecting responses so fast, thank you. I think a lot of it is about timing and how I articulate it, something I am not taking lightly, trust me. I will report back

Thanks to all for the thoughtful replies! I should have been more clear by asking whether or not to tell others. I absolutely plan on telling my son when the time seems right and appreciate the wonderful dialogue suggestions. I like to wait for him to show interest and curiosity in a difficult subject before I bring it up. I think children are very good at letting their parents know when the time is right to have certain conversations - it's just a matter of whether the parents are paying attention to the cues.

As for others, there are times when I wish my son was wearing a t-shirt saying "Yes, I've got the Asperger's, here's the definition, now stop looking at me." He's already getting a lot of comments about being weird from playmates and sometimes I think it would be easier if everyone just knew what it was and knew that he had it. In my family, I do all the heavy lifting, even occasionally when pregnant, because I have to. My husband is not physically capable. You should see the staring and the comments that we get! If my husband was in a wheelchair or otherwise visually handicapped, people would be a lot nicer. So by that logic, I tend to think that if more people knew he had AS and were then educated about it, his life could be easier.

But yes, it is probably best to leave that decision up to my son. I just worry because he tends to get embarassed so easily that I'm afraid he will ask me not to tell anyone. I at least have to tell his teachers (he has an IEP anyway) and anyone who will be caring for him. I know how important trust is and I would never want him to feel betrayed.

My son has gradually told friends, on his own time frame. I have told some of his friends' parents, particularly if he was spending significant time at the friend's house. I've also told friends' parents if I knew that he'd told the friend.

My son has, in the last couple of years, told selected friends in honor of Autism Awareness month, in April.

Thanks for posting this question---it's something I have struggled with too so it has been go to read the responses.

We have been taking the approach that Tracker mentioned...but just dropping things here and there. It has come up naturally in conversation. It just happened last night, in fact. My son asked me, "Mom, how old are kids when they stop having temper tantrums?" We talked about why kids cry and have a "temper tantrum" and about how some kids are really laid back and almost nothing bothers them but others like things a certain way and it's hard for them when things change or aren't how they expected they would be. He's so self insightful...he paused for a minute and said, "My brain works the second way. But not all of the time. Sometimes I start thinking about something and it has to be that way or I'll feel really upset." Nothing wrong with that! It just feels like if we can break these things down together he can internalize that difference is OK before he hits the schoolyard.

As far as telling other people--that is one I still struggle with. You are absolutely right about other people's perceptions. Telling people who don't know a thing about it other than watching Rain Man back in the 80's can be a mistake, I think. And it seems like there are too many people out there like that. We've told (more distant) family members so they would understand if our kids had a hard time at large family events. But I do regret it at times, especially when my grandma says things like, "I don't believe there is anything wrong with this kid at all! What did you say is wrong with him again?" UGH! At those times I wish I could suck the information back out of their brains.

1) you should tell your son. We with AS appreciate honesty. If we find out that someone has not been honest to us, we'll have issues with respecting them.

2) the decision about telling others would perhaps be best left to be decided by your son later on.

To answer you more specifically on telling others:

I find I rarely use the actual label with others. What I WILL do is inform them (when necessary) of things like my son's sensory issues, or problems with transitions, or problems using his hands, and will often note that he is special ed qualified (and also GATE qualified, he's no dummy). Basically letting them know what they need to know without providing a label that they may not be fully up to speed about.

I still remember a bunch of years ago when my son was still having meltdowns in public how a woman came up to me during one and asked first if she could help (no, but I appreciated the offer) and second if he was autistic (to keep it simple I just said yes). Some people around us really do "get" it and figure it out without us having to say anything. I must say, I really appreciate those people.

I think the child should know. @ the appropriate age....It will better help him understand how he interracts or needs to interract with other people...

I don't "publicize" that my son is AS....but before i do introduce him to new care givers...teachers, babysitters, sunday shool teachers, or any other adult that will be interracting with him.....I do tell the adult his diagnosis...what works best/doesnt work with him. His interrests...etc....I do this to prevent any confusion on the adults part or a melt down on his part....If I had a child that was diabetic...or allergic to chocolate...etc...I'd do the same thing for them....

My son turned 10 years old in May. I just told him today. He has asked lots of questions over the last few months (he said he thought he was ret*d or had something wrong with his brain) and it just came up naturally in a conversation today. He is obsessed with cats, so I got him the book All Cat's Have Asperger Syndrome, by Kathy Hoopmann. And I also typed some information about executive brain function and how this impacts Asperger's. He totally got it and understood. And actually, he was excited with all smiles!! "So.... this is a GOOD thing!! !!" In his case, it was a relief to KNOW that there's nothing really wrong with him. He's just different. He actually asked me if he could take the book to school and have his classmates read the book. Then they could maybe understand him.

I also purchased Asperger Syndrome, the Universe and Everything, by Kenneth Hall. I'm sure he will devour that.

What I did tell him is that he should never use Asperger's as an excuse to not do something. If he feels uncomfortable doing something or has a lot of anxiety, then he should talk this out with an adult (all the school staff knows). Because most new things make a lot of people apprehensive, but we all overcome our fears.

I never intended to NOT tell him. I was more afraid that he would feel bad about himself and not have the self esteem to get beyond it. But I knew he was ready for it. And he's fine with it today. Tomorrow may be different, but we will cross that bridge then.

........... now to get through puberty.