NT reactions

[nupurkumarika]

away from diagnosis - dd is doing fine in the journey right now but I experienced something new today. I confided in a few NT friends as we needed playdates for dd for ABA sessions. People are not rude, they go quiet as if they do not know how to react. I lose all the normal gossipy conversation I used to have. They are careful how they react to dd and I become concious otherwise. Have others experienced this? I am definitely beyond the "crying/sympathy" stage. My take is that ok - dd has it and we deal with it in the best way we can. But do others understand it in this way...?

It is a tricky one. Decent people were totally forthcoming with play dates; others backed off speedily (though were still keen I note for play dates with my clever NF DD). To be fair, they may just be unsure what ABA play dates are like. If you stress that they get a qualified adult to facilitate the kids playing, while they relax with a coffee, they may be happier with the idea! Or suggest you come too, as they may not want a stranger in their home. I think sometimes though people go quiet because they don't know what to say, and are terrified of saying the wrong thing . Give them time and tell them about the diagnosis, but don't go on and on - let them see that you can also still chat about their news.

I've found that the knowledge someone already has about ASD really shows when dd1's diagnosis comes up in conversation. Those who know a fair amount about autism can have perfectly normal conversations with me and don't talk to dd1 in a too loud voice! Those with less knowledge definitely struggle.

For me it still feels early days. We're just coming up to the first year milestone since dd1's diagnosis at age 3.1 years. However I adopt a fairly "breezy" approach, trying to make dd's ASD just another part of my wonderful funny little girl's personality. Sometimes I think other people just don't know how to react. Hopefully the people we're all in contact with will become more relaxed as their experience of ASD increases. Or at least that's what I tell myself when I feel uncomfortable about others' reactions .

Other peoples' reactions can certainly be an eye-opener. Range from the head-tilted "oh how awful" (doesn't help) to the "he really doesn't seem it" (equally unhelpful). Many of the mum-friends I'd made up to that point started to melt away. One of the comments that upset me most was "oh we thought [her] ds had it too when he was 2/3 as he never stopped screaming, but it was just naughtiness"

Mostly people just don't know what to say though. And the good news is that you start to filter people instinctively - the friends I have now really are the ones that 'get it' - cba with anyone who doesn't

Anyway. ABA playdates: I would try and do them at your house to avoid the problem sickof highlighted. I tended to just invite other kids for normal playdates but say that ds's sort of expert nanny was there who would play with them in a really fun way. Not sure how old your dd is but assuming she's still very young? If so, to reassure you, it does get easier as they get older (4yo+ I suppose) and playdates from nursery/school just become the norm for all kids so there isn't anything unusual about it. I also agree with suggesting to the mums that they come along too and can just relax and chat with a coffee while someone else does all the childcare

Very useful thread Nupur. I am not at this stage yet, but I struggle with play dates invites.

One other thought: it can be a bit awkward sometimes having to try and explain ABA to people who have no idea about asd, let alone therapies used to help, so I wouldn't go into too much detail about that aspect. Would tend to present it simply as an expert childminder who is helping ds with play and behaviour.

this is some excellent advise here. i think i will just stick to the nanny portion. also....have written explaining my point of view of wanting to have an absolutely "normal" friendship with all the friends whom i have told about dd....