To tell or not to tell?

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Hello all,
I had an interesting conversation with another mum, she was saying her DD is having trouble with learning at school but her DD didn't want any help or seeing anyone as she has seen how mean kids can be to my DD.

I get the feeling that some parents think its wrong to tell fellow parents that your child can have difficulties with the fear of judgment. I have also noticed they don't like labels.

I would tell parents when they would be looking after my DD as her behaviour can be an issue and if they are aware they can talk her through any issues that pop up. There was a issue with danger awareness when she was younger but she is better now.

I also did ask in one thread whether the class being told about your child having aspergers is a good thing or not. You see in my daughters case she had so many disagreements, issues, problems with all of her classmates that the teacher felt it might help for her peers to know of her aspergers in hope of more understanding. It made things better for a short time but then things went back to issues again.

What has been your experience? I get the feeling some parents think l shouldn't have a label with my child. Yet that label, which l don't see it as that, has helped her to where she is now, speech therapy, OT therapy, 4 years of early intervention, some aide help at school and PSG meetings to continue her progress.

Would love to hear your thoughts

I have no issues disclosing my sons diagnosis to freinds, family or if I am talking to someone who is sharing concerns about their own childs development. If I feel it is necessary, in a group or program I have disclosed as well. I would rather people understand why and hopefully be compassionate towards my son, then just ASSUME he is a brat, spoiled, undisciplined, etc...which I have heard in the past.

A lot of the time, it doesn't do any good.

It's still their problem, and giving it a name and trying to explain is "making excuses."

Then there's the stigma. Which, if it was't bad enough before, could be a game-changer now.

Part of me wants my son to have a diagnosis, an IEP, and all the things that go with it. I am tired of fighting this battle alone. My husband is adamant that there is nothing wrong with his only son; part of me agrees.

Well obviously there is nothing WRONG with him. He's lovely. But part of me believes that a label for his specific struggles is going to hurt a lot more than it's going to help.

I want to be wrong, but in my experience I am not. Educators, mental health professionals, relatives, and other parents are some of the most dangerously ignorant people on Earth.

I sympathize-- I want to tell, find some compassion, some acceptance, some help. But the other mother is right-- her daughter is safer without the label, and so is yours. Keep it to yourself.

I am always happy to talk about things like that, I will talk about my depression openly too. Then you find that people you have known for a while come out and say they have had similar problems and it does you good to talk about it. I beleive keeping it a secret can be damaging and will continue to limit awareness. The more people that understand the less bullying there will be. For us it has not come to it yet as we have no formal diagnosis, but we are getting closer to a dx and I will be happy to talk about it once we know for sure.

I agree and feel that educatiing people is key. MANY people have a stereotype about Aspergers (My sons diagnosis) and I dont mind talking to them and letting htem know the real deal. In hopes that someone might meet another kid like my son and thing twice before judging them.

Also, the label has HELPED my son, get services, join social groups, helped me join support groups, and just KNOW what we are dealing with.

I dont mind telling people...and it has also helped my son. I have disclosed his diagnosis to his Karate school, so on the days when he is having a roung day, calling out, or turning his back to the sensie's, they will undertand and have more ocmpassion. NOT that they dont correct my son, they do, and he has learned, but they know it isnt a form of disrespect, it is just something he needs to be instructed with patience and care, and they do. I also had an instance in a music program where the teacher excluded my son from a reward becuase in her opinion he wasnt being a "good listnenr", simply casu ehe had his back turned to the group, even though he knew where they were and was participating. I didnt tell her before, and she took it out on my son. Once I explained his diagnosis, she felt badly that she excluded him, and understood that he wasnt just being disrespectful or ignoring her. He NEEDED to turn his back to participate cause the group was too large and loud.

so there is a time and a place for disclosure, and I honestly feel it is all about YOUR attitude. How YOU present it. If you are educated on your childs diagnosis, then you can dispell any stereotypes and brush off any ignorance that is thrown your way!

god luck

We talk openly about our daughters Autism/SPD/ and Seizures depending on the conversation and the person. I also believe that education is key and just sharing the info with people can change them or at least give them something more to think about. Of course my daughter is a charmer so that helps too....lol I can not tell you how many people did not know that girls can "get" autism.

As far as labels they are a necessary thing for us. The label is what gets her the help she and we need. She is going to be getting OT, ST, preschool, and the list continues. My dad is having a hard time dealing with everything due to the labels. We have told him that label or not her first time at school people are going to know something is up and she will struggle anyway...at least with a label we can get her help now and by the time she is ready to start school maybe it will be easier for her. If it is not getting a label now, it would just happen when her teachers/peers have issues with her behavior.

Also I guess I don't want my daughter to feel we are ashamed of her or that she should be ashamed of who she is. I feel if we did not openly talk about everything and talk to people about her autism/SPD and Seizures that she would grow up thinking there was something "wrong" with her and not have good self esteem. Plus I want her to grow up in a world that has tolerance and acceptance and the only way to do that is to educate people and talk about it.

My son is 4 and doesn't have a formal diagnosis yet but he gets enough services for me to believe that he is on the spectrum. I do explain to family and friends what works and what doesn't work for him. I have explained it as him being his own person, to him having some ASD traits. One day I was talking to my neighbor and my son was just letting it all hang out and I noticed that she wanted to say something about it. I explained to her that he has started receiving services and what his traits were. She then opened up to me and let me know that her teenage son has Oppositional defiant disorder (ODD). We had lived next to them for 6 years by this time and I always thought her son was just shy. It was good to speak with a mother who had a teenage son who had been through a lot of the things I would be facing. Had I kept things to myself, I would never had received that wealth of information.

I also spoke to my OB/GYN about my son and she informed me that her 10 year old son has AS and gave me sooo much advice on how to deal with the school system. I am a talker so it felt good to open up and talk to people about how my family was coping. When I spoke to people, I started learning that each family has their challenges. People are more likely to open up to you when they see you as a fellow "struggler" than when they think your life is perfect.

If my son is mainstreamed (I really don't want him to be until HS) I plan to talk to his teachers about it. I hope to also ask the teacher to recommend a couple children that my son gets along with and swallow my pride and reach out to their parents for help in helping my son make friends. Hopefully by the time we get to that point, my son's speech will be a little more fluid so that he will be better at talking to his peers.

I guess those things are true, and it's also true that I have had more good experiences than bad.

I was open with my neighbor-- now we talk about depression, compare meds, and I found out last week that he, being bipolar, is a fellow risperidone survivor.

It's just-- the bad experiences are so bad. Even the wonderful open-minded kindergarten teacher straight out of college says she doesn't see it because she doesn't see the typical stims and aggression-- and what bothers me is that she says she doesn't see it by way of reassurance. Because ASD is such a terrible thing. Yeah-- obviously it has kept me from living life, and my father and probably grandfather and maybe other grandfather and possibly great-great grandfather before me. Snarl.

I guess I will amend my statement to, be prepared to deal with them. Know what can happen, have a plan to deal with it in a positive, constructive, and socially accepted manner, if your kid is older have a plan to help them deal with it. Have that BEFORE you open your mouth, and be ready to implement.

There is actually a link in the Parenting Index labeled "disclosure" that deals with both disclosing to the child him or herself, and also to people around you. It is a complicated issue.

We have had very good luck being open about my son's diagnosis. Unfortunately, our situation is so specific that I don't know if our success would apply to anyone else.

We left it up to my son to choose whether he disclosed or not, and in 4th grade we had a very good experience with him disclosing to his homeroom class and closest friends outside of school. Since the kids had a frame for his sometimes odd behavior, they actually stopped mistreating him - I think they previously thought he was intentionally making them mad.

Once DS got into middle school, we cautioned him against using the label with near-strangers. We taught him, instead, to say "I'm the kind of kid who ______________" and to express a particular need. DS did really well with this in the first few weeks of school - he learned a lot of kids' names by saying "I'm the kind of kid who needs things to be written down to remember them. Can you write down your name three times for me?" (we found this out because he came home one day with little scraps of paper with names written repeatedly. very cute.) We explained that he wasn't to lie about it or hide it, but it wasn't the first thing people needed to know about him, that he should get to know people before talking about AS.

My son may be a special case: he is very social and can manage his behavior pretty well as long as he's got certain accommodations. He does read social cues in a kind of broad way, so he can pick up on major gaffes (this is also why disclosure is important, because he doesn't pick up on finessing in either incoming our outgoing communication, and it is helpful to him for other kids to know miscommunications can happen. They don't expect it when he does well in so many other areas.)

We tend to struggle more with expectations that are too high than those that are too low: I don't have a diagnosis, myself, but when I talk about the possibility most people pooh-pooh me. Same goes for my son until something goes horribly wrong.

So, I hope all this helps. I would say this: it isn't something we did lightly, and we spent a lot of time discussing it as a family before we actually did it: though almost all of the kids reacted positively, we did go over what might happen if they didn't and tried as best we could to prepare him for various possible outcomes.

Thank you for your responses, it have helped me get my head around it. Just to clarify, I would tell someone when there would be a issues popping up with DD's behaviour to help understand so they didn't think she was being disrespectful as well. I didn't tell people straight away and a lot never knew, it was only people my DD was seeing more often than not. I made a call on how she was going whether to bring it up or not.

In my DD's case her behaviours is what gets her in trouble with her peers, her need to know what's going on(whether they want her to know or not), saying abrupt things that can be insulting, being one track minded about play, l'm sure you understand knowing about ASD. So it's her actions that upset the kids to a point they think she is annoying, rude, mean and some call her a bully when she sticks up for herself by calling them names back.

My experience has been people have been generally more understanding, and as said before a chance to educate, however in more recent times l think in my DD's case they feel her antics are annoying and upsetting and they grow to dislike her and it can be the case for both the child and parents. In some cases l think it was seen as too much hard work.

I was told once that as aspie kids grow older it becomes more obvious their differences and this has been the case with my DD. When she was younger she had a lot more friends, but now there is very few and they don't catch up outside school. We have gone from lots of play dates and sleep overs in the earlier years to nothing now a days. DD did go through a stage where sleep overs scard her and she doesn't do them anymore even though she is interested so l guess they can change can be the case too.

So l guess telling can have its positives but if your child's behaviour is too upsetiing or annoying, it appears that explaining her case doesn't seem to help and the end result for my DD is she feels aspergers is a negative thing and she is an alien. It's so hard trying to turn that around in her head, to help her understand the do's and dont's of social so she can have more positive relations with the kids. (Sigh) l guess this is another chapter in ours lives to work through and hopefully all the assistance and educating her will pay off.

For parents with younger kids, please don't think this may happen to your child, every child is different and my girl is outgoing, not quiet, wants to be part of the action, so her behaviour and differences are noticed more by the kids. Her reactions also is what gets her in strife when she feels she is being attacked (which in some cases its them trying to explain to her), she gets bitter and wants to hurt them back. So it comes down to personality l guess its what l am trying to say.

I also think that being open about it could reduce the denial, confusion and predjudice. I have had such a battle getting any Drs to listen, schools, family, friends, people have such closed minded ideas and stereotyped thoughts of what autism is. She cant have AS coz she talks, shes a girl, oh my kids are just the same, all kids are like that, refrigerator mother etc etc. Its taken me over a year of battling to get where we are and we are still nowhere ear the end of it!