The people in your life - did their attitude towards dc and you change after your child's diagnosis?

[sleepyhorse]

just wondering how people react and treat you and dc when you tell them your child is different to theirs. Do you suddenly find some people stop calling you for days out with the kids? Or did you find the opposite maybe? Interested to hear peoples experiences because dh and I are wondering if we should even tell people, should the outcome reach a diagnosis once we see the paediatrician re ds.

I am at the very early stages myself educational pyschologist assessed DD and thinks mild autism have told a few "close friends" as I really did need to have a cry and let out my concerns some have been great and I am relieved and less stressed out on playdates as no longer have to explain DD's odd quirky behaviour others have gone to ground I think they are probably not wanting to intrude and do not know what to say to us but it does make you cross and you certainly can be quite surprised who your real chums are. Good luck with your decision.

Hi giggle, it's so hard isn't it. I'm like you, my way of dealing with it is by talking about it with friends. So far as nothing has been confirmed, I have only told friends (probably too many!!) my fears and suspicions re ds having autism. But dh is not happy about this as he said that there will always be a stigma attached to ds and that people will treat him differently. I kind of see what he means so just wondering if I should keep my mouth shut once we know for sure. Ds has huge tantrums when we are out so people must know something isn't right. What is your dd's behaviour like?

TBH things stayed pretty much the same at first, but gradually I lost some of my friends because we we having less and less in common. It wasn't them any more than it was me.

They were looking after each others kids and I couldn't get into that, even though a couple tried to include me because I couldn't put ds in that situation where they didn't know how to handle him, and him being my eldest I would unintentionally offend their children by giving them drinks in lidded cups when they had long ago moved on from it, and talk to them like babies. I just couldn't pitch myself.

I wouldn't say anything bad happened that wasn't just organic development, although it has isolated me more. But I don't believe there was any particular predjudice.

It was pretty obvious something was different with my DS2 so I found it very easy to tell friends. It actually was a relief to tell people so they cut him a bit of slack and didn't think we were crap parents. I only lost one friend. (Good riddance.)

I think at school it's entirely down to your DCs behaviour. If it's not too bad, you may prefer not to mention it. Personally I think honesty is the best policy, but others believe it's nobody else's business. I told everyone and DS still got invited to parties while big group parties went on. The children were much more tolerant, also, once they had an awareness talk in year 1. Everyone in his class (bar one) was nice about him.

I have told all and sundry , but then I am signing to ds and this is quite 'visible' .

I am also helped by ther fact that he doesn't give a damn, so won't care about people knowing and if that weeds out a few people that wouldn't want to be around him, well all the better!

not at school yet, so that may change a bit, (although we live in good old fashioned council estate so don't really get the 'yummy mummy' look what my child is achieving set... )

My DD's behaviour used to be outrageous I refused to take her anywhere as she had a total meltdown when it was time to leave I soon realised that it was a bit of a vicious circle because I didn't take her anywhere when we occassionally did go somewhere nice I can't blame her for not wanting to leave (she probably thought best make the most of this these trips are rare!!!) By taking her out more and more she is now much better always have to have a fallback bag of sweets to lure her back into car though!!! I firmly agree with the "tell friends" approach you will feel more at ease when you are out but wait until you get your head around it all and are dealing with it you don't want to listen to a million questions and the awful pity looks before you are feeling more positive about coping. How old is your DS?

I have lost one 'friend', we still meet for coffee very occasionally but she clearly does not want my ds to play with her pfb, even though they have been best friends since birth (same ante-natal group).
I feel said because ds keeps asking for her ds to come over as 'xxxx is my best friend and I haven't seen him for ages', my ds doesn't realise he is not xxxx's best friend anymore, he hasn't seen him for over 15 months now
When I see her I pretend everything is great and ds is doing marvalously

Also one set of grandparents has backed off, strange as I cannot pin it to anything else but they are just not keeping in touch, they live over three hours drive away so visits have to be overnight and are a tad stressful. But I can't understand it, we do all the phoning and offer dates to meet up but they always seem to be busy . we have just made and posted homemade easter biscuits for them but they have sent nothing for ds for easter.

I try not to think about it too much tbh, my family and most friends have been fab fab fab, infact one friend from school is picking ds up today to take him out with her ds, she is great with him and it's so nice for ds to be with other boys his age without his mum shadowing him

So I do think it is mostly beneficial for people to know ds's dx, they can be more accomadating if needed and if they don't want to know ds anymore then we don't really want them in our lives.

I can't say I noticed anything either way tbh, most people know DS has Asperger's, I mean I don't tell people at bus stops or anything, lol, but if I know someone well enough to be talking about my kids then they know. Though I think people are just in general more accepting of differences if they know there's a reason for them.

I suppose I could have not told some of the people that know, close friends and family it would have been difficult not to tell and anyone who's had to look after him needs to know...but he knows and is quite open about it, so I never really saw any point in not mentioning it - I wouldn't want him to think there was any need to not tell anyone, to be embarrassed by it, so, yeah most people I know, know.

I'd rather people knew he has AS than to judge him on things he doesn't choose to do - if you see what I mean.

I've also found that the older he is the harder it would be to hide anyway - the things that weren't noticeable in a small child tend to raise eyebrows in a 14 yr old.

DP had a harder time with it, he didn't want him 'labelled', for a long time we argued about it - he said I should just accept DS as he was and stop trying to pick faults with him, then it was a case of - well ok he's not an exactly a typical wee boy, but what does it matter?

He was worried about people knowing, but, I think he genuinely though DS would grow out of it.

My DD2 is visually impaired, her retina hasn't developed properly and she has limbal stem cell failure, one cornea is scarred and the other will eventually follow and her vision will gradually decrease to seeing light and dark, possibly making out outlines of large objects. We didn't know she had anything wrong with her eyes till she was just over a year and we don't have a diagnoses as such, genetic tests have come to nothing and I've lost count of the amount of doctors involved in DD2's care.

Other than wearing glasses you probably can't tell my DD2 is visually impaired, she's just so well adjusted. The stem cell failure often causes infection, swelling, redness, usually people assume she has conjunctivitis or a cold.

When we found out DD2 has this problem, we told our family and close friends. Most of them treat her the same or perhaps like she's that little bit more precious. My SIL's DH (now ex) who had previously been quite affectionate towards her however stopped speaking to her, avoided situations where he would be with her, even stopped making eye contact with her! It was like she had been labelled 'damaged goods' and therefore he had lost interest.

I recently brought DD2 into work with me and a colleague later admitted that he had been scared to look at her incase her eyes looked wierd???

And I've also lost count of the amount of times I've had to tell some elderly relatives 'no, she's not clumsy, she can't see it properly, she can't judge depth and distance very well'

Well ds's autism was in your face glaringly obvious and still is really tbh. However it really didn't make that much difference to say the parents in the playground they believed he was a nasty little sod and I was an ineffective parent regardless.
I lost friends because ds didn't handle being around other children too well so I avoided the gatherings and I was taken over by the battles too.
The weirdest reaction was from a friend I knew for years who when her ds started playing her up when he was 12 or 13 decided he had autism and set about convincing the professionals that autism was the cause of ds's behaviour by quoting instances of ds's behaviour and passing it off as her son's.
What made it more bizarre was that she was giving examples of my five year old non verbal ds because it was the only knowledge she had of him as ds went to different schools.
I could never work out how she thought she might convince everybody that her ds didn't speak when he had been speaking just fine for ten years Incidentally no ASD there despite assessments and second opinions just in case you think I'm being mean.
Ds's dx altered my father's whole perception of disability tbh. He was a strict authoritative parent but it had never entered his head that a child's behaviour could ever be anything other than poor parenting. He changed enormously when ds was going through dx and became an incredibly tolerant and supportive GP and I loved him even more because of it.

We didn't lose many friends because of the dx (ASD) - just one actually - but we have lost touch to an extent with many because we just dont have the time / energy / cant share the same experiences (eg ski holidays are financially and practically out of the question for us so thats one thing I will never get to do now!). I also had to change work to a much more part-time role. DS also found the toddler groups etc intolerable esp around his regression. So I think it is inevitable to an extent you drift away from your old life and some friends and you do become more isolated if your child can't tolerate social groups - DS just kept trying to leave so I could never talk to anyone and I just gave up.

We have made lots of new friends with SEN kids though. Occasionally we go out for a meal and all have a good laugh about how many times we get up in the night and our kids quirks.

We also found out who our best friends were - not always who we expected. Parents of DS3 older brothers up at school have been amongst the best support and I think that is because we were quite open about it from the start of his regression (it was obvious ASD or worse we diagnosed him off the internet within a week of regression) and to an extent they have lived it with us every day in the playground. I suppose there is also a bit of them thinking that could have been us because up to that point there was not a hint of anything wrong with DS and his older brothers are totally typical, top of the class, popular etc. and we were just like any other family in the playground. So it helped alot they knew us first before DS3's regression and also that the school knew us. It means we have not faced any of the parenting comments. However when DS3 starts school and it a whole group of new parents, perhaps that will be different. DS1 and DS2 have a great support network of other parents at school who take them to the cinema and have them for sleepovers. So people we hardly knew before DS3 regressed (DS2 had only just started school) and only know because their kids are in the same class as ours now help us out the most.

I also find that I am different. At the start no-one could say anything right and when people tried and made a hash of it I didn't handle it well - even though if it had been the other way round I would have done no better. I was just super sensitive and fell out with my parents etc for a while. I think they realise now that was just me having a huge wobble and not coping. I do think every parent should get offered counselling the first year, I definitely could have done with some and still could. I also find I have zero tolerance for problems of typical kids - I just can't relate to typical summer born boy being a bit behind, or fussing over what they are allowed in lunch boxes at school etc the typical playground talk - before DS3 I could have joined in and sympathised but now i just want to yell 'is that all you have to worry about'. So I think partly I have distanced myself because I just can't relate to the concerns of parents of non SN kids in the same way at all, they just seem insignificant. I am also a different parent. I wasn't exactly a helicopter parent of DS1 and DS2 before but now I am most clearly on the slack side because I just don't have time. I expect they will thank me in years to come when they get to run wild as teenagers because I forget to check up on them. They are already the only kids in their classes who walk themselves to school.

I would say talk to people as you go through the process, because the people who shared the journey with us are the people who are still here day in day out helping us out.

I too am hugely intolerant of parents of non sn kids who seem to make a huge drama of seemingly insignificant and petty difficulties. I find it hard to join in because I am silently screaming FFS get a bloody grip I wish that was my biggest concern.
Agnes my oldest three suffered healthy neglect because of the demands of ds and do you know they are the most independent tolerant and resourceful young adults I've ever met. Old before their years most likely but they've survived years of being an afterthought and turned out really well regardless. And hey they still live at home at 23,22 and 18 so it can't have been that bad now can it?

Have to admit that when DS1 was DX I wanted to tell everyone who had judged DS1 to just be a bad child with a bad parent.

OP, yes they did.

Fuck'em. Got better friends now!

I have now lost pretty much all the friends I had pre-dx and it has broken my heart. Some were v longstanding friendships, but still, they started dropping like flies since dx 2 and a bit years ago. My closest friend (and DS1's godmother) broke off all contact with me the day after diagnosis, and that level of cruelty and heartlessness still takes my breath away and added immeasurably to my pain at the time.

Other than that it's sadly been a case of diverging paths, and although I'm angry, I don't honestly know how much is me. As others have said, I've changed, despite my protestations that I never would. Inside I'm the same, I still enjoy getting pissed, having a laugh and generally ageing disgracefully, but yes, I am sooo less tolerant now of other people's concerns re their NT kids, and worse, I'm undoubtedly pretty defensive re any perceived lack of empathy or understanding from others re our situation. And i accept that's probably pretty unfair, but it pisses me off no end that mums at DD's school don't ask about DS1 or appreciate that we have a whole other level of issues to deal with. Fuck it, I can be bitter as hell. And that's not attractive! I've hardened as now I often feel I'd rather be completely friendless than trust people and risk them hurting me as so many others have done.

It's devastating though, just another of the indirect consequences the bastard autism. Losing so many people I thought would be in my life forever

@OP- yes, I have lost friends, mainly through lack of time and me being intolerant of listening to their NT 'worries' about their kids.

@fedupandfuming- your post struck a huge chord with me as a few weeks ago a close friend (one of the few left!) asked me why I'd changed into such an angry and aggressive person, to which I replied along the lines of why the F**k do you think?? (ASD DDD8, v challenging behaviour, many battles etc etc)

But it did stop and make me think about who I'd become- I used to be really laid back and enjoy a laugh, now I just want to tell the world to FO....food for thought, I sincerely don't want to turn into a nutter and let this beat me, just wish life was easier than it is

This thread makes me sad. One of the most difficult aspects of having a disabled child is how much it affects relationships. It's true that you find out who really cares.

DD is awaiting a CP diagnosis. Friends know she is different because at 2 she's not walking. However, they are all supporting through the wait for the diagnosis because they are true friends.

Most of my friends I had made through the dc at school have just disappeared into thin air, I am terribly upset about it and it makes me so lonely. Being the parent of a dc with disabilities is a lonely enough business as it is Some friends, well one in particular has become a much closer friends as a result, she has had to deal with some harsh blows in life, and I think that level of empathy makes all the difference. Old, old friends, dating pre dc, it has not affected at all, but they all live far away. Guess it depend on the individuals, those who have only ever had perfect lives, with no traumas have run the fastest, in case it is catching!!!!!!!!

I haven't noticed too much of a reaction to the hfa diagnoses for my 2 sons. That came about 9 months after I'd deregistered ds2 to home educate due to his unhappiness at his school. Home educating has caused the most upset to my relationships with others in our case.

I am struggling with this atm. We are in the process of seeing lots of hcps with ds (10 months) because of developmental delays.

I have told everyone, because I figured it was better to talk about these things, and it might also stop people asking all the usual baby questions - 'ooh 10 months, I bet he's a handful, is he/crawling/rolling/walking/into everything...' '...er nope/nope/nope and nope'

Most of our friends have been amazing, offering to look after our dds during appointments, helping out with the school run and letting me cry/moan panic whilst feeding me cake!

Some people I have found a little harder. Usually it is well meaning, but they are so relentlessly positive that I feel as though they think I am being negative (in fact fil told off dh last week for being negative). I really don't think we are negative, just realistic. We don't know what is going on with ds, but keeping our fingers crossed and saying 'I'm sure he'll catch up' doesn't seem the best way of dealing with it. When we first had ds assessed, we had been telling ourselves he was fine and that we were being silly, it was a huge shock to find he was so behind in some areas, dh and i sat on the sofa, dumbstruck. Neither of us want want that feeling again.

Because i have 2 older dds (4 and 5), I have lots of friends who have had their 2nd and 3rd children around the time i had ds. It is getting difficult for these friends to come over because our house isn't babyproofed and is full of Polly Pocket and Playmobil and all the stuff you try and keep away from babies when they first start moving. We have been meeting up at baby and toddler groups, but I am finding this increasingly hard, as the difference between ds and other babies his age are starting to be more marked.

I have just posted something very similar as my DD1 has just been diagnosed with Dyspraxia and I want to talk about it but don't really feel able.

Like some of the people on here, I have had a very bad experience with a close friend who immediately after I told her about the dx confronted me about my DDs behaviour towards her child and told me that my child's behaviour was not "normal" and that I could not control my DD.

We have not spoken since which is very difficult as her DD is my DD2s best friend and all three girls are in the same class.

It is so sad the level of prejudice towards special needs and I have to confess to a certain amount of ignorance and discomfort around the subject before our dx. Not that I would ever have behaved the way some of the people on here have experienced.