Anyone else not telling their child their autistic?

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Hi,
we are a family of 4 and our youngest child who is 4 was diagnosed with autism when he was 2 and a half. At that time, he had very limited communicative skills(unresponsive to people around him, 10 or so poorly spoken words), lots of behaviours(screaming, frequent meltdowns, very obsessive about his interests) and no interactions with other children(including his older brother). Shortly prior to the diagnosis, he was having some issues with his hearing, so we've decided to attribute all of his issues to that as opposed to putting the label on him. We feared that by disclosing our sons diagnosis, that he would be treated differently and judged by everyone.

So since the time of his diagnosis, we've gained access to many services and amazing people who have helped us tap into our son's abilities. We try really hard to challenge him and raise expectations to which he almost always end up meeting. He presently attends a regular preschool with typical kids 4 mornings a week and the teachers can't believe that he even has an autism diagnosis. We all feel that he is high functioning.

We want him to know that he is capable of anything he might choose to take on and for him to feel like he's fine just the way he is. We felt that he would have enough challenges and obstacles throughout his life that having misinformed people's opinions of what an autistic individual is would only make things worst. When he gets older and if he ever expresses feelings of being different or being unable to relate to his peers then we might bring it up, but for now we just can't see what good it could possibly do. I worry sometimes that if we did let his diagnosis be known that he might eventually feel that "if people already think there's something wrong with me then maybe their right...".

I don't presume to say that the choice we've made is the right one by any means, I'm just curious to know whether anyone else has made the same choice or even had these same feelings and concerns about the "full disclosure" path.

I honestly wouldn't presume to know.

For my part, I was diagnosed late in life (37). Clearly, I was pretty high-functioning to make it to that age and stage, but at the same time, there were dysfunctions that were clear for objective observers to see.

I had a very difficult time as a child, generally ostracized from my peers. I sometimes wonder whether, if an AS or HFA diagnosis had been available in my school years, whether there would have been interventions that could have helped. (Which is, of course, separate from the question of whether or not my parents would have told me of a diagnosis).

I made a few mistakes that I would not have done had I the advantage of knowing of my diagnosis earlier. But mistakes are not the unique province of the undiagnosed.

At the end of the day, you are the best judge of you, your child and your community. Revealing the diagnosis is an irreversible step, so if you aren't persuaded it's the correct one, then perhaps you should rely on that.

That being said, I think you need to revisit this issue regularly. As your child approaches adolescence, I think it will become increasingly improper to provide anything less than full disclosure.

I have never been diagnosed but I have always felt different, and I am pretty sure I am on the spectrum. I feel you are right not to label him, but since you know,I'm sure you will be sensitive to it. I've spent most of my life feeling tortured because I have never fit in. You may want to present it to your son as a personality type, rather than a disorder. I'm sure you will get different opinions, though. The fact that you are asking this question shows that you are on the right track....

I am concerned about some different symptoms I think I might see in at least two of my grandchildren, but I do not think their parents would consider much from me about that. So, I am just watching as best I can and trying to learn as quickly as I can with hopes of possibly doing some helpful maneuvering and directing without ever actually labeling anyone.

I think by looking through the forums and seeing adults so happy they are finally diagnosed and know what's wrong with them, you should realize that this is a bad idea. Just because the child doesn't say that they feel different doesn't mean they feel it and know it and are not depressed by it. Of course when the child is 4 I don't think it's appropriate to tell, but around 10 or younger I'd say.

Firstly, Welcome to the forums, enjoy your stay.

If you have the time, I would suggest reading various threads on the forum. It may help you to better understand some things, and may also provide you with useful ideas.

Secondly, this thread comes up a lot.

So, in order to save time, I will just cut and paste what I posted in the previous thread:

For the most part, what you need to focus on is mostly conveying this information to your child:

1. Everybody is unique and has their mind work in a different way. No two people think exactly alike. You think differently than he does, his father thinks differently then you, his siblings think differently, 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 than the other, merely different. It is like cats and dogs. Each and every dog is unique. It has its 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 a 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 him, but there are other people who are similar. Its just that people with his type of mind 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 understanding people with the normal, less rare, minds. Tell him 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.

As far as using the words, autism, or asperger’s syndrome, they really don’t matter. They are just words made up by professionals to sort people into categories. He doesnt need to know about the history of the diagnosis, or the implications, or anything like that at age 4. What he needs to know right now is that different people think differently, and that isnt a bad thing. It just may create some confusion, and he should be aware of that.

Over time, as he matures, you can go into more and more details. But for now, I think that is all you need to worry about.

I was told when I was about 8 or 9. I've always know n that I was 'autistic" but it is only recently that I explored autism and learned the details of it. I'm at last glad to understand why I have not been accepted by society.

I completely agree with all the replies so far. I very aware of the fact that his perception of things differs from my own and possibly a lot of other people. I don't pretend to think that he is typical by any means, I just feel that he seems to have already found a way a his young age to understand that he needs to "play by the rules" in certain instances. And unfortunately that's how it'll need to be for him to navigate his way through this life and find successes. How sad of a statement is that, that he'll essentially need to pretend all of his life! Makes me ill frankly to think about. Hopefully for him he'll find people in his life(besides us) that will accept him as his true self so he can find some relief from the whole thing.

I do however plan to often discuss the social problems that will make an appearance. He's 4 now and we've already done the whole "I am unique and special" thing(obviously that'll always be ongoing) and we've focused a lot of our attention lately on giving him the tools to create relationships with people. Teaching him how to ask a friend to play:
1- Walk up to a "friend",
2- Look at him/her,
3- Ask if he can join in or ask if he/she want's to play a certain activity with him,
4- Play(turn taking),
5- Saying something at the end of the game("thanks for playing; that was fun; good game")
I know how obvious this may seem to most people who will be reading this but for us breaking everything down to the simplest level and really making an effort not to assume that he instinctively understands really has made a tremendous difference in his understanding of these things. And now that he's experiencing successes with kids, all these rote steps are becoming more and more natural to him. But obviously these things can only get him so far.

I also plan to make it a point for him to understand the things that are really important in this life. I for one don't believe that you need a lot of friends. From personal experience, I found that having lots of friends usually means that I'm surrounded by a lot of people that I have to censor myself around; be the perfect mom, wife, friend, etc.. What's important is to find those rare people that are there to support you whether your right or wrong. I'm in my 30s now and I've only found maybe a handful of them in my lifetime. Everyone else has been temporary and replaceable(wow that sounds bad!). He needs to know that popular opinions mean very little and that very often it's inaccurate. People in general emphasize the wrong things in life and judge everyone else by those "ideals". I'll try and teach him that gossiping and all the politics that go with it are nothing more then people's insecurities shining through and that they're not worth his time. I know that his school years will most likely be the toughest for him and I'll make sure to let him know that. And to let him know that things are different once you get out of that fishbowl. My husband and I probably come across as arrogant and rude to people because we don't play into the games and roles people play. Our family is what's important to us and all the other stuff just doesn't seem relevant anymore. I hope our kids will see that you don't need to live up to other peoples expectations to be happy in your life. Just surround yourself with genuine people and keep good care of them.

Sometimes I think that it's the whole world in general who has a problem. If we wouldn't waste so much time pretending to be what everyone else thinks we should be I think we'd all be in a much better place, maybe this spectrum wouldn't even exist. Just my two cents...

Your child is very young so I don't know. My husband won't tell his son who is 13, either will his mother. He was Dx when he was 4 with PDD-NOS, then later with CAPD, and at age 12 with NVLD.

All I can say is, he'll get frustrated and say things like 'what is wrong with me? why am I so different???' and his dad will say 'you aren't different, there is nothing wrong with you'. I do feel letting him know would be a good thing but, as his stepmom, I can't overstep that line, that is his parent's business. I have told my husband that I think he should tell him but he refuses.

The difficult thing is that, because he thinks he is just like every other kid, he expects other kids to act the same and they don't. His parents switched him from an LD school to another private school but one which takes any child 'wanting a small learning environment'. Well, the other boys won't talk to him and there was a curriculum jump and he wasn't doing well and now gets after-school tutoring twice a week. And the school is so small, only 14 kids in the 7th grade, that all the other kids know he's getting extra help.

I haven't seen the other kids but my husband told me the other boys look and act like typical teens. My SS has a social awkwardness about him, even his walk is a little up on the toes at times, I mean it is noticeable but wasn't at his old school because there were lots of spectrum-ish types there.

So they aren't going to tell him, I don't think ever, and his dad is just hoping he'll eventually mesh with the other kids and he can go to the public high school in 2 years. His mother has already called his teachers and asked if they can 'buddy him up' with another boy and they said no, and she was also very upset when she was told he was failing and would need extra tutoring after school. She got mad at the teacher and told her son she was an 'idiot'. I don't think it was the best placement but I told me husband as much before and he didn't listen.

I guess I am rambling but I think 4 is awfully young so maybe tell him later, when he is curious and starts to notice things - I mean 13 is too late! although I really don't think they will ever tell him.

BTW, both parents don't accept the Dx when he was 4 for PDD-NOS. He didn't talk until age 4 and a doctor observed him and said he had autism but both his parents say, and still say, that he didn't talk because of ear infections. He also never crawled, just started walking sometime in his 1st yr, never babbled etc - so they both don't accept that Dx, they still say it was ear infections. The CAPD was sometime in elementary school and the NVLD was early this year, his mom doesn't accept that Dx, his dad does but feels most of it doesn't fit, just some. I had been telling my husband for a year that it really sounded like aspergers, his traits and he informed me that I wasn't qualified to say so. I had never heard of NVLD before. So we march forward never saying anything and it does feel a little wrong, but like I say, not my call to make. I bought him a social skills picture book, his dad said I could give it to him if I cut out all references to 'autism', but I have decided to just return it. I'm too tired to deal with it anymore as I am having a baby in 4 weeks and my nausea came back in the 3rd tri for some reason.

Four is very young so I think you are fine for now. Eventually, however, he will notice that he is different and, at that time, he is likely to appreciate the explanation. He isn't the label, and the label doesn't define him, but it can provide an answer for something the child is already aware of. My son was diagnosed at 7 and told as part of that process; for him, it was a relief, and that is a common reaction. There is nothing wrong with him, but there is an explanation for why he is different, and he has found comfort in it.

Tine,

I was a child in almost exactly the same situation except that my parents didn't withhold the diagnosis, they didn't have one.

Your child will get good support as a result of the hearing problem and believe it or not, is more likely to cope with the problems of aspergers/autism as a result.

They won't solve everything however and your child will grow up not understanding things which aren't explained by the hearing issues. For example;

1. Difficulty making and keeping friendships
2. Meltdowns
3. Overwhelming Feelings of Depression

One thing I know is that the worst time to tell your children seems to be from about ages 12-18. It's better to either tell them earlier or let them discover it for themselves (perhaps with some prompting) as an adult. The teenage years are difficult for most children and finding out that they have a problem won't do their self esteem any good.

My children have full disclosure (though they don't have hearing problems to hide behind). I think it's significant that I was in the same situation as your child and yet I decided upon full disclosure for my children because I believed it was a better option.

I discussed this on my blog a while ago, you might find those posts interesting;

Should You Tell Your Child that they have Aspergers (Life-with-Aspergers)

I told my son almost as soon as i found out. He was 9. HE is totally cool with it. I know every kid is different and how mine is may not be what yours would feel about knowing. I talk every now and then to him about it during our nightly talks. He told me about a kid in his class who stimms, blurts and does other odd things so i tell him maybe he has autism too and then i go more into detail about classic autism and how they (the boys) are the same, yet so different. I want to be as open as i can with him. I don't want him to feel something is wrong with him and him not knowing what it is cause to me, i think with some kids it can cause anxiety (or heighten it) and/or depression. But like i said, all kids are different and may react differently to being open about it. Good luck in whatever you choose.

Like others have said, he's only 4 so he's too young to make sense of it now anyway. But when he gets older, he will need to understand why certain things are the way they are. It's possible to do this without pathologizing the difference. But the difference will need to be explained because he's going to notice it and comment on it and you don't want to be like the parents in Grace's post and more or less lead him to believe that the real differences he sees are a figment of his imagination. That will lead to frustration as she describes.

Something will happen when he's older, or perhaps a series of things, that will raise the issue for him. I suppose it's like talking to a child about sex. At some point the child asks a very meaningful question and then you have to make the decision if you will answer the question with age-appropriate truthfullness or try to gloss over it to put off The Talk for another time. But a question will be asked. Not by a 4 year old. But he will ask something when he's older and the way he asks will be your cue for what and how to tell him.

I wasn't when I was younger - but then again, we didn't have the info we do now, so we couldn't possibly have known.

My mom always knew I was "different", though, even right after birth she could tell.

We JUST told my 13 year old son a week ago. I had been putting it off, because as an earlier poster said, it is an irreversible thing. I was hoping that my son wouldn't feel different, and that maybe we could tell him as he finished high school or something (we have another son who we also suspected would be on the spectrum if we had known back when he was this age, and I don't think he would consider himself on the spectrum now).

By the way, you will get MANY responses from people telling you that you should tell him NOW, or soon, or whatever. You're the parent, you love your child, you probably know when your son is ready to know. Don't let anyone rush you into this decision.

I waited until my son began to ask certain questions, such as:

1) Do I have ADHD? (my son takes meds to help him pay attention)
2) Why did I go to Wesley? [Wesley is the place where my son took social skills classes a few years ago)
3) How come conversing with people is so much harder for me?

I figured the time was now, and so my husband and I told him in a relaxed environment (in the car). Talk about a nonissue! It would seem that things that may have mystified him before suddenly made sense, and he began to recognize that a few of his friends may have it as well (and they do). Other than that, this was no big deal. He's only referred to it once since then, and even that reference was not a big deal. Here's this thing, telling my son his diagnosis, that had been hanging over my head for years, and it was NOTHING. I think he's happy to know, but it doesn't DEFINE him. I'm really happy with the way things turned out.

I hope that when you decide to tell your son, that the situation is as uneventful for you as well!

I agree that your son is pretty young for a discussion. I can't imagine trying to tell my daughter when she was 4. But telling her when she was 6 gave her a lot of comfort in who she is and that it's ok to be different. I think when these kids get into school it becomes pretty obvious to them that there's something that makes them different from the other children, and the other children notice it too. We were careful to present it not as a "disability" but a "difference". We talked about how everyone's brain is different, and that her "asperger brain" is really good at things like figuring out math, doing puzzles, organizing, etc. but not as good at things like knowing how to play with other children and hearing loud noises. We told her that other kids have to work a lot harder at getting good at the things she finds really easy, and that she just has to work harder at some of the things her brain doesn't do so well. We also got her the book "All Cats Have Asperger's" and she was really pleased to see how she is similar to her cat (her comment after reading the book was "THAT explains why my cat is my best friend! We think the same!")

Before we told her, she was just miserable at school...depressed about not fitting in, traumatized because of bullying, etc. After telling her, she finds it really easy to tell me about things that happen on the playground without being upset. When things happen, she's able to say "I think it might be because they don't understand how my asperger brain thinks". I would say just keep a close eye out for comments from your son that tell you he is ready. For us, the day our daughter saw her grandpa for the first time in 3 years, and after he left, she said "Mommy I really love my grandpa. I think he is the only person I know that is like me. He understands computers really easy just like me but doesn't understand humans" we knew she was ready.