How do you cope when people are not as supportive as you thought they would be?

[nikos]

That's what's been happening with a member of our family and it really hurts . Before ds was being assessed for ASD, I would have put this person down as quite a caring person. We probably talked every second day on the phone etc. Since this stuff with ds she has left long gaps between phone calls and never asks about him. Feel very upset by this as I'm the type who will openly talk about ds problems. I know I should just forget about it, but I do feel very pained by it.
Anyone found the same and did you later discover why the person reacted like this?

I've also always been there for this person through all their troubles, so we did have that kind of relationship

Nikos - I have lost a friend over DS1's dx of ASD. I'd known her for around 15 years, saw her most weeks, talked on the phone etc. She was close to my kids.

When DS1 got his dx (which friend knew all about me going for), I emailed my closest friends with all the details, what it might mean, how I felt and so on.

Everyone replied, being gorgeous about it. Everyone except this friend. I kept texting her, thinking she couldn't have got it. Anyway, eventually she calls my DP. Apparently, for reasons too long to go into here, she felt personally attacked by my email and was 'keeping her distance' to avoid and argument. She then sent flowers (no message).

She made my DS1's dx about her. I shall never forgive it and she is no longer welcome in my life.

You have too much to deal with to take the needy dead wood who give nothing back. It hurts and I'm so, so sorry you are going through it just when you are vulnerable, but I promise, many people are unexpectedly lovely as well.

I sometimes wonder if people simply don't know enough about a situation.
The more positive things people can say about a situation, the easier it is for someone to cope with it. I'd perhaps find really positive stuff/books etc and see if they're prepared to at least look at some of it? If they're not interested, the only thing you can do is give them some time and find support elsewhere. People really are sometimes very odd...

I had the same problem when it was 'announced' that DS (currently being assessed) may be autistic/asd.

Friend didnt speak to me for nearly 2 months considering that we usually speak to each other for an hour or more each day on the phone... but shes fine now - got over it.

And MIL kinda refuses to accept that anything might be wrong and hes just 'slow' GRRRRRRRRRRRRRRRRR MY CHILD IS NOT SLOW!!! and "when he gets talking, he'll be fine" - he has severe speech and communication delay. and next to no understanding. hes 2 btw. so she talks loud and slow to him. - and still says theres nothing wrong. GGGRRR

My MIL speaks very rapidly to my DS1 using lots of weird expressions/folk language etc and just blinks in astonishment if I suggest simple words.

right there with you on that cyber! dear lord why do they have to be so dense? its not a difficult concept! DS has to endure "yeeesss DUCK iitttss a T-r-a-i-n" in a booming patronising voice. grr

A couple of my friends have distanced themselves from me since dd3s dx, it does hurt, but on the other hand I've made new friends at the sn groups we go to. It could be this person really doesn't know what to say to you and rather than saying that, has just gone quiet as she feels she is not in a position to help you as maybe she has done in the past. Do you have any info on asd you could email to her or post that may help, something that could be the start if a conversation iyswim.

I've lost friends since ds1's dx. And have rejigged some family relationships.

Now 6 years post diagnosis I actually see it as a good thing. The people who are left in my life are people I know will always be there no matter what.

At first i used to get upset.
i dont bother any more, most of the people who have been unsupportive are actually family.

comments like "oh she/he cant be asd he,s so normal, its just normal behaviour they,ll grow out of it"

"he,s only got a touch of autism, we are hoping he will grow out of it"

"i dont see anything wrong with him, i think you are worrying too much"

"you need to chill out all this anxiety is whats making him act the way he does"

i also lost touch with my best friend when DS was out of school, she used to phone me every other week to tell me how brill her kids were doing at school and how i should put DS back into school because his socialisation would be very affected.
i dont really have much to do with her nowadays.

Thanks everyone. It's possible this family member doesn't know what to say and therefore just cannot phone. I've noticed she has become awkward around ds and can see her sort of analysing him, IYKWIM.

I suppose its difficult for me to understand. Even before ds I did not feel awkward about discussing special needs with various parents I've met over the years.
It's hard just to forget about this, you start to see people in a new light.
To be optimistic, my MIL has been totally amazing and that's been a revelation.

My sister who I always thought I was very close to, adn could tell her anything, has left me feeling very uneasy, and I haven't spoken to her for a couple of weeks.
She has started to say things like "yeah, blah blah autism, autism, autism, that is all you every say" which isn't true, I barely mention it, and only if asked. I always ask her about her children, and lately my dn was in hospital with mystery infection, I was very worried about him. During this time she told me all about it, and then as soon as he got better, she said I was boring, going on about statements, all I had said was that I had received the proposed statement, , I think she is selfish.

My ds was diagnosed with autism a while ago now, + to be honest I was made to feel as if the diagnosis was my fault by some family members. Comments like, "he's not autistic, these experts only go on what you tell them, you must have over-emphasised things" were common remarks at the time.

This really upset me, as we'd gone through a couple of years of regular appointments + monitoring. At the time of the diagnosis, we were just focussed on making sure the school he was due to attend, were aware of the special support he needs. We managed to get a statement, + he's really come on in leaps + bounds since.

I do wonder at how insensitive people can be, not sure whether they're trying to block things out, or in my case were "angry" because this diagnosis had been brought into our family.

Everybody is fine with us now, + do seem to appreciate the lengths myself + dh have gone to, to support our ds, he is lovely by the way, + proving to be popular at school, + making progress, which is a big relief!

This makes me sad too, I feel like family and friends are not as close anymore since ds1's diagnosis of severe epilpesy, due to damage of brain, and I too am one of these people who tells everyone everything, I am an open book, and wil talk openly and freely about my ds1's condition, as soon as I say "brain damage" peoples eyes instantly revert from me to him, searching for signs he isn't "normal" and it really really hurts me. He is 15 mnths , still cannot sit unaided, so threfore gonna be a long time before he can walk, hopefully he does, and he pulls himself along the floor now, his co-ordination, memory and sense of smell are affected as his left and right temporal lobes in brain malformed in pregnancy, also have had 3 miscarriages at the stage when everything forming, think this is a def link, also have a dd, 7 in 3 weeks, but to different partner, so got to wonder, I actually had someone say to me yeterday " Oh I don't know how u do it, well I know u have to, but........" I was gobsmacked, didn't say anything, was so shockedNo I don't have to do it I am priveledged to do it, no one expects to have a sn child but what people need to realise is they are not a feckn burden!!! My ds1 is a delight and does not mean any less to me as my nt daughter, it is a disgrace people feel fit to think this, never mind say it!!!! Makes my blod boil

Tclanger, I feel exactly the same , we are humbled to do what we do for our kids, he needs me more, yeah, he is not a burden, these people need t learn wen t shut up, seriously, makes me irate, I always get people saying "I don't know how u do it" or a close second for me is " Aye, but he might grow out of it" !!! Bn told he will never grow out of seizures, they will always b there, and b difficult to control, because of damge to brain, and even wn I have told people this they will proceed to say "....but he might surprise you"!!!! AAAAGGGGHH!! Just thought of another one that has t b top of the list "Yeah but wait til he is walkin....you'll wish he wasn't, cos he'll be into everything"!!!!!! That is terrible, I would love nothing more for him t be mobile, and wrecking the place than a child who cannot walk!!! And I am extremely houseproud but would love him to be pullin everything out, thse people need t think before they speak, I sometimes wonder if they r human tbh

I hate it when people say oh but it could be worse, she could have x or x. It just winds me up so much, its as if they think I am ungrateful for having her at all when in reality I am probably more aware than many about how precious life is as I've been so frightened for DD before. I think many people just really don't know what to say tbh and so they try to think of something, anything to prevent silence. I am often asked if DD will grow out of her condition and almost feel guilty saying no because I know that will make the person asking feel bad for asking! I never mind talking about it, in fact I could talk for ages and find it hard to stop sometimes but I think a lot of closer friends felt uncomfortable asking too much, maybe they were worried about what they would find out. My DD is now 20m, she was diagnosed not long after birth and its only recently that some friends have been brave enough to ask questions about her future. So I think given time your friend will maybe manage it its just that in the meanwhile you may well have found support elsewhere.

Sorry just read your second post and seen it was a family member not a friend. Again they will probably deal with it in time but I know it is very hurtful.

with any sn/disability unfortunatly you do lose friends and occasionally family members as they just cant cope with it.

but you do know that those who stick it out with you and are there for you are the ones who are going to be there pretty much forever.

I agree Misdee and also you meet some people who you never would have met otherwise and end up having a real bond with them through shared experience.

sorry have to ask but what is this "support" word. can't say I have ever heard or expierenced it.

I may have been very lucky then 2shoes I've had brilliant support from the group set up by parents of children with my DD's condition. Really really brilliant helpful people. And on here of course