When do you share ASD dx? — The Bump
Special Needs

When do you share ASD dx?

Example:

A couple distant relatives (20 and 18 years old) asked me a lot of questions about DS over Christmas. If it matters, we don't see these guys often. They are very nice and repeatedly have said what a cute kid DS is and enjoy spending time with him. When they made remarks/asked me things like why he doesn't answer to his name, how interested he was in his movie, etc. I felt unsure as to how much info to share. They may have been told by another family member, but I'm not sure.

In the past I've been very open about DS having autism in hopes that others would become more understanding, but posters on this board have made me reconsider this. I am beginning to see that when you offer that kind of info, you're opening yourself up to a lot of comments/questions/advice and, good or bad, you need to be prepared for that. Also, I want to protect DS's privacy.

Thoughts?  How have you all handled these situations?

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Re: When do you share ASD dx?

  • We have only shared the diagnosis for DS to close family and friends. We feel those are really the only people that need to know. We have only had the diagnosis for 2.5 months and I'm still trying to deal with it myself.
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  • Thanks for your input Auntie. In this situation, would you have offered a diagnosis? I felt like I was dancing around the issue and it was awkward. I would have liked to have explained that he has autism because it would have been easier for me, but I'm concerned that I have over-shared in the past and want to avoid that in the future. To be more specific about the relatives, they are my MIL's boyfriend's children (so possibly DH's future stepbrothers). If we start seeing them more often in the future, I would tell them or verify that they already know.

    Another example of my problems figuring out when to share: we took DS for a haircut awhile back. He loathes haircuts and it is always a horrible ordeal. The stylist was talking to him in language too complex for him to grasp, asking him to do things I knew he could not or would not do, you get the idea. I finally just quietly told her that he has autism and haircuts are difficult for him. She was very understanding and things did go a little more smoothly after that, but it still felt weird telling a stranger something so personal. Can I ask what you would have done in this instance?

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  • imageAnlo:

    Another example of my problems figuring out when to share: we took DS for a haircut awhile back. He loathes haircuts and it is always a horrible ordeal. The stylist was talking to him in language too complex for him to grasp, asking him to do things I knew he could not or would not do, you get the idea. I finally just quietly told her that he has autism and haircuts are difficult for him. She was very understanding and things did go a little more smoothly after that, but it still felt weird telling a stranger something so personal. Can I ask what you would have done in this instance?

    Not auntie but my I answer?

    I would tell the hairstylist, and we have told ours. I find it helps her not overstimulate him. Before his first cut her and I had a talk and I told her some tips to keep him calm and than he won't follow complex instructions dispite his age. DS has a speech delay so she knows he won't answer and while she sometimes will ask him a question, she doesn't get flustered like others might when he won't answer.

  • imagekittylove:
    imageAnlo:

    Another example of my problems figuring out when to share: we took DS for a haircut awhile back. He loathes haircuts and it is always a horrible ordeal. The stylist was talking to him in language too complex for him to grasp, asking him to do things I knew he could not or would not do, you get the idea. I finally just quietly told her that he has autism and haircuts are difficult for him. She was very understanding and things did go a little more smoothly after that, but it still felt weird telling a stranger something so personal. Can I ask what you would have done in this instance?

    Not auntie but my I answer?

    I would tell the hairstylist, and we have told ours. I find it helps her not overstimulate him. Before his first cut her and I had a talk and I told her some tips to keep him calm and than he won't follow complex instructions dispite his age. DS has a speech delay so she knows he won't answer and while she sometimes will ask him a question, she doesn't get flustered like others might when he won't answer.

    Thanks for your response!  

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  • image-auntie-:
    imageAnlo:

    Thanks for your input Auntie. In this situation, would you have offered a diagnosis? I felt like I was dancing around the issue and it was awkward. I would have liked to have explained that he has autism because it would have been easier for me, but I'm concerned that I have over-shared in the past and want to avoid that in the future. To be more specific about the relatives, they are my MIL's boyfriend's children (so possibly DH's future stepbrothers). If we start seeing them more often in the future, I would tell them or verify that they already know.

    I probably would have, but I'm in a place where educating/advocating is comfortable for me. If he was acting oddly enough that they questioned you, I'd probably have shared. But I can totally appreciate where you don't want to be explaining and handing out fliers at Christmas dinner, kwim?

    In the early going, I shared quite a bit, in part, because DS was very atypical at times. I regretted this a bit as DS got older and less atypical/impaired but frankly I found a lot of the people in his life with whom I'd shared either didn't "get it" or forgot. Seriously.

    In any case, nobody I shared with has come back to bite me or DS. He does get teased at times, but most of the kids and adults he knows refer to this as DS being DS rather than a manifestation of a disability. I have to confess I was on pins and needles at DS's Eagle Court of Honor because I feared someone might inadvertently say something unkind during the open mike portion where the kids and adult leaders roast the new Eagles.

    Another example of my problems figuring out when to share: we took DS for a haircut awhile back. He loathes haircuts and it is always a horrible ordeal. The stylist was talking to him in language too complex for him to grasp, asking him to do things I knew he could not or would not do, you get the idea. I finally just quietly told her that he has autism and haircuts are difficult for him. She was very understanding and things did go a little more smoothly after that, but it still felt weird telling a stranger something so personal. Can I ask what you would have done in this instance?

    In this situation a good support group can give you the name of the local stylists who cut our kids' hair. I'd call to give them a heads up before bringing him in. Same with swimming instructors, dentists, coaches, scout leaders. If something has gone badly or worked well, I share that information as well. Because DS was older when he was dx'd, we didn't have a label early on when he was struggling with these sorts of issues. By the time we knew why he couldn't sit nicely through a haircut or dental cleaning, he matured enough that he wasn't so bad at it. In a way, not knowing meant I didn't lower my expectations too much and he really did eventually rise to the occasion.

    In some cases you needn't use the "A" word, you can just say he's anxious around noises like clippers or has trouble following spoken language. One thing I found is that a lot of times I say something like "doing x is hard for DS; we're working on it" only to have the other person say "I have a niece, godchild, son, grandsn like that too, s/he has autism". Like the tech at my son's vet's office, of the lady who waxes my eyebrows, or the RN who works with my mother's neurologist, or the mom who is president of the band parents association this year and the other one who was president last year or my BFF's godson. We're everywhere and sometimes sharing buys you a little comraderie.

    Thanks again. It is very helpful hearing from someone who has run the gamut from childhood through adolescence.

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