When someone says "I'm Sorry" for ASD or disability?

[lusterleaf]

I guess I am just not sure what to say when someone says "I'm sorry" when they learn of DS' ASD diagnosis. For example when DS was first diagnosed, my FIL told a family friend, and when this family friend saw us he said "Sorry about DS". I didn't know what to say back.

Now recently, I joined a bunch of Autism support groups on Facebook and occasionally will post from time to time about my experiences with DS. Unbeknownst to me, my friends could read what I post on other groups even if they're not part of them. Well today I get a message from my DH's aunt that lives in Florida, "I had no clue up until last week that there was something wrong with your DS and that he was having issues, then I saw your posts. I just wanted to let you know that you are all in our thoughts and prayers"... again not sure how to respond with that. It almost feels like they're acting as if its a disease or something. I just replied with "thank you" and she responded "you're welcome" but I just thought this was awkward.

Have you ever dealt with this situation where someone says "i'm sorry"?

 

[nicki01]

I too found it hard when people responded the same way when my daughter was diagnoses, as you said its massively awkward! The first few times it made me angry, I would think 'she hasn't died', she is still the same child I had this time last month?? Why are you sorry??

So I started saying that, (not the died part) I would just brush off what they said and say 'oh don't worry it hasn't changed anything, she is still Charlie. Just means now we have a diagnosis we get support with..... In our case its speech and language and advice on managing her behaviour.

 

[PresqueVu]

There's a lot of misunderstanding about things and I'd hope that is just people not knowing how to respond but wanting to show that they care. I've had a friend say they are 'sorry things can be challenging for us' which I think could be a better explanation sometimes?

 

[mummy2o]

As I'm also on the spectrum and when I mention DS has autism and say sorry. I look at them and then say for what? Explain how he's perfectly normal and how I won't have as many worries as if he was a normal child. They are all different and I'm very grateful he's a pretty placid boy, with some intelligence. Just he needs to do things like stop and clap at every bus we see whilst walking or telling me where all the nearest toilets are whilst out and about. And that some of the greatest minds also had autism and if it wasn't for us we probably wouldn't have invented the wheel. (an autism joke)

 

[Thurinius]

Being contrary I also take offence when people are too blasé about it, saying things like 'well we're all on a spectrum of some sort' or pointing out some,thing that's a bit ads about them or people they know. Or saying that their child doesn't like new things too.
But your child can talk, communicate with you, communicate with their peers etc and isn't in speech therapy and needing extra help with absolutely everything.

 

[AP]

Being contrary I also take offence when people are too blasé about it, saying things like 'well we're all on a spectrum of some sort' or pointing out some,thing that's a bit ads about them or people they know. Or saying that their child doesn't like new things too.
But your child can talk, communicate with you, communicate with their peers etc and isn't in speech therapy and needing extra help with absolutely everything.

This is a really good point Theres a fine balance. When someone says that to me I actually am offended.

 

[nicki01]

I also agree with Thurinius, sometimes my mum tends to do that and it does get my back up. Like she is brushing Charlie's autism under the carpet and pretending its not there, where actually Charlie works really hard everyday and I don't think that should be brushed aside.

I guess I'm sort of contradicting my earlier post, its a very hard subject and I don't think my own feeling are 100% clear yet. I think it depends who is making the comments and what I'm feeling at the time.

 

[minties]

It's probably because they have no idea what to say. I found out that my brother is autistic in the last year or so, he's 30 and was diagnosed around age 4 or 5 and I had never been told. i had no idea what to say to him when he told me. I think I said something about it explaining why he was so cool and different...I'm sorry might have been said also.

 

[sequeena]

People really just have no clue I feel that disabilities are still a very taboo subject. I know instantly feel on the defensive when someone asks me as I don't know what they're going to say about it. My son uses a wheelchair so his disability is pretty obvious and I've had a few people be really obnoxious about it so I mainly just ignore people now or don't stand round long enough for them to ask about his disability.

 

[Thurinius]

I also agree with Thurinius, sometimes my mum tends to do that and it does get my back up. Like she is brushing Charlie's autism under the carpet and pretending its not there, where actually Charlie works really hard everyday and I don't think that should be brushed aside.

I guess I'm sort of contradicting my earlier post, its a very hard subject and I don't think my own feeling are 100% clear yet. I think it depends who is making the comments and what I'm feeling at the time.

Completely depends on my mood too. We are still in the stage of accepting my son's disability, so I am very up and down. Some days I am really positive about his prospects and on those days I will take great offence at anyone feeling sad or sorry for me.

On other days feeling less positive and helpless I feel extremely angry when people suggest autism isn't serious or even more infuriating that it isn't a real condition, or just a fashionable diagnosis. God I have vented some spleen on internet forums on that one!

 

[HBGirl]

I feel you. I always say "why? I am not sorry"

My worst is also "Oh, I am sure she will be just fine". Yes, her chromosomes will undelete and she will be peachy.

 

[Midnight_Fairy]

I sometimes get annoyed but feel people don't know what to say x

 

[busytulip]

I agree with PP and become irritated when others (specifically family members) try to gloss over DS1 and DS2's ASD & SPD diagnoses by saying things like "he is so well behaved" "are you sure that he has that and isn't just a bit weird, I have a friend who specializes in...and they said..." I find that so insulting. As if I didn't get multiple opinions from health professionals. I think it also degrades and trivializes all the years of speech & physical therapy and hard work that my children have done and all that I've done to help them.

I understand where people are coming from when they say "I'm sorry" but my response is always "I'm not" and if there is time I share with them how having children with ASD has helped me become a much better version of myself.