If your DC's differences aren't immediately noticeable, how do you decide whether to tell others?

[Anonymous]

We're sort of new to all of this since DS (almost 5) was diagnosed about 10 months ago and has what probably would have been called HFA before the new guidelines. Often times people don't know right away that something is different but he definitely has behaviors that are outside the norm for his age group and as he grows I expect it will become even more obvious as social situations with peers only get more complex. I've been thinking about it a lot because I never know when to say something and when to just let it be. For example, we told his old preschool last year when he got the diagnosis and they were so freaked out by it that all of a sudden they were calling me every day about something after never calling once in the previous 8 months. Today we went to a soccer class and I decided to tell them to explain why he sometimes doesn't seem like he's listening or doesn't interact with the other kids. They were really great about it and I was glad we did. I've wondered with friends too or at class events for his school where I see other parents noticing that DS is doing something that isn't always age appropriate. Usually I don't feel the need to explain although I do sometimes feel a bit judged myself since I'm sure at least some of them wonder why I'm "letting" him do stuff. Since we're just at the start of this, I'm hoping for wisdom from those who have BTDT. Obviously we tell school, sitters and anyone else for whom it's really relevant but how do you decide about more casual settings or with other parents/friends?

[Anonymous]

I tell sports/coaches. School I also told but we were upfront when we were looking - many did not want him but two did and the one has worked out great as they have no issues except a bit extra support. Other parents - most of them know and are very supportive - the ones we see outside school all know. They look after him a bit more and if something happens at school, knowing I worry given the concerns, they let me know so I can deal with it (I do the same for theirs). Some teachers get it, some do not.

[Anonymous]

OP here - thanks. I think at first maybe I was erring on the side of over disclosing because I don't see it as a bad thing, more just part of who he is, like the fact that he's tall. I've gotten a couple weird reactions from people (ie: pity or random awkwardness) plus the former preschool issue so it got me wondering if maybe I should keep it to myself more? I wasn't talking about it in detail or anything, just saying he has ASD.

[Anonymous]

I just say developmental delays impacting xxx. I never give the diagnosis. Pick and choose.

[Anonymous]

I don't mention it to anyone not directly involved in his care. It's like if you had a gifted or ill kid. Would you go blabbing to everyone you immediately met that you have a supersmart kid or would you tell them about some physical/medical issue that has no bearing on a casual encounter. I work hard to maintain my kid's privacy.

[Anonymous]

I could have written your post. My oldest is in high school now and, for me, it was hardest to know what to say to whom in the earlier elementary years. For us, the differences were more apparent in those years. I got the same reactions as you did. In hindsight, I wouldn't change who I told or how I talked about it. You never know how someone will react/manage to the information but I've been pleased with the number of people who were positive and kept an eye DS - facilitating an interaction, redirecting, being kind, etc. That SAHM who was always volunteering at the school and whose eyebrows went into her hair when I told her? She was always a drama queen who looked down on every kid that wasn't as precocious as her kid, and the kids that were more precocious were seen as competition. Whatever.

We were always forthcoming with teachers, even in high school. My DS has an IEP. In elementary school, at the start of each year, I'd write a letter to his teachers introducing myself and leting them know more about DS, especially the positive things and things that help him get back on track. In middle and high school, we had a meeting with all his teachers that allowed DS to meet them all. In middle school, he refused to say anything and I did all the talking . In high school, he was more willing to talk about himself at thos meetings and to speak up when he was having difficulties in class. By this time, his differences were less obvious. His development is slower and he's more quirky but it's less apparent. HTH.

[Anonymous]

I tell if they ask. For instance when we were signing him up for Jewish/Hebrew school, the form asked if the child has an 504/IEP. Same for Capitol Cotillion. At school, DS has an IEP and all his teachers are on the IEP team so they already know about DS's issues.

For coaches, I don't tell but he is not involved in group sports so it's a non issue.

DS's BFF's family knows the diagnosis but his best friend is also on the spectrum.

FYI, the current world champion in chess, Magnus Carlsen, who also happens to be the youngest world chess champion ever has had rumors of Asperger's following him through his career. His father basically answers these rumors by saying that Magnus has never been formally evaluated for ASD.

[Anonymous]

My son (3rd) grade has a reading disability, but is otherwise pretty typically functioning. Most people expect a child his age to be able to read well, so I tell people who need to know in situations where his disability may impact his experience. His Sunday school teachers, his cub scout leaders, his sports coaches all know so that they can make accommodations when/if the activities call for reading that is above his level. He can tend to get embarrassed/frustrated when he feels like he can't keep up, and that can lead to poor behavior, so it's in everybody's best interest that they know.

Most of my friends know, because I share things with them when I need support working through concerns.

I've been working with him to also begin to advocate for himself with adults and peers, to ask for more time or help when he needs it. For example, when playing a new board game with his cousins recently, he handed the directions to his cousin and asked, "could you read this out loud to me so I understand it better?"

It's going to be a long road, and as he gets older, I plan to include him more on the decision when/if to tell people, because it's his story not mine.