HOw do you deal with people telling you your DC is 'fine'?! - Rant alert!

I am so new to this, that I am in one moment feeling all the frustration of those above, (including wondering what all the other parents are thinking, but not saying) then in another moment, thinking that surely I am making this all up, and I am finding an excuse to make me feel better about the fact that I can not cope.

I suppose because DD is my first, and not quite 3, as well, I spend countless hours analysing her behaviours and wondering if it is, in fact, normal for a 2.10 year old to do x.

I hate this myself

It's a complete denial of not just the dx but all the problems that o with it. I am sure most people think it helps but nope, it don't!

Teacher told us ds3 would be better within a year LOL- he's almost certainly asd, marked language issues, 18 month @ delays

My lovely but batty frend thinks it was God intervenin with a message of healing but I think teacher just didnt fancy the paperwork

i had to fight the denials from dh, fil and mil for years.
They made me feel i was quite crazy at one point.
ds is 11 and has aspergers dx
Interestingly i would put them all somewhere on the spectrum. They just thought he was amazingly clever like them i think.
They still don't get it. They have read the reports/assessment notes... they have read the science (and they are all scientists)..but somehow they just cannot quite grasp it. Whether they actually can't or don't want to is another matter..i suspect some of the descriptions are a little too close for comfort tbh .Apart from dh once, i have never heard them question where it might come from genetically .
I don't give a flying feck where it comes from btw...i just do with some help and understanding with our boy.

Of course witch has a good point- but it really doesn't make our lives easier.

Mabanana is spot on: it turns us the Mums into gloom-and-doom- mongers and induces unnecessary guilt. Not to mention the fear of Munchausen accusations. Speaking as one who in the past has had dd's problems attributed to sexual abuse/dysfunctional family and over-protective parenting, what I do not need is yet another person suggesting that I am overreacting. My Mum has finally cottoned onto this. But it took time.

I wanted to say something similar to witchandchips. I think that sometimes people are worried that agreeing there is something "wrong" with a child can seem like an implied criticism.

Can i just put the otherside of the story a bit? Think sometimes people say these things not because they think its a made up condiiton but because they want to reassure you that they think she/he is a lovely child and that their condition is part of who they are.

My DS who has many problems inc CP, communication disorder, metabolic disorder, mobility and balance issues attended a local SN nursery. Said nursery is so oversubscribed only those proving they are very much in need of SN education can attend.

Recently when asking a member of staff to fill in my DLA renewal, she commented "he doesn't get DLA does he? He's no more difficult to look after than a normal (yes, she said normal) child."

Of course, how stupid of me, all children need hours of physio every week, cannot be ever left alone, cannot feed themselves at age 4, cannot dress themselves and aren't toilet trained etc.

I feel for you, although no one wants to be told, "your life must be really dreadful." the odd acknowledgement of all your efforts would be nice.

My MIL is similar, I'm sure she thinks I exaggerate the issues we have.

Lingle - seen your post, will respond elsewhere.

Deeja - am sorry it's such a nightmare for you and your family are so unsupportive.

Well, pre-dx was extremely awful, but everyone, apart from my wonderful sister, has in some way blamed me. They al think they can cope better with my dc. I am having a particularly difficult time at the moment which may be affecting my reactions to them, but just one kind word is not that dificult is it? The kindest thing that anyone said to me recently is when the doc that diagnosed my 5 year old said 'autism is never the fault of the parents'. Everyone else can't wait to jump on me and have a go. They either don't really think it exists or say that they could have dealt with it better.
sorry this is a very bad day for me. I need some time off i think, but I can't have it. I am having a day of 'this is not the life I planned'. I love my dc and I wouldn't want anyone elses dc, but I wish that this society and system would provide the support my dc need, and not make me fight for everything.

sorry to hijack but Total how is your related issue going? Where they said your ds was now near the 50th centile but you don't feel this reflects reality at all?

I agree with Pag - that it makes people feel better to be so optimistic. I think this sort of stuff tends to be worse pre-DX - as before DX people can treat you as if you are worrying about this sort of stuff for the fun of it, whereas most people will shut up a bit once you tell them a professional says x/y/z is wrong.

I understand that it is hard for family and others close to our children to accept that they may have problems, but I find it difficult to tolerate or to make excuses for comments which are said in a manner that does not take into account my feelings. I have to deal with professionals involved with autism and many of them are not exactly polite to me to put it nicely, and then to find the same lack of support from those who are supposed to be closest to me is very stressful. Three of my four sons have asd, and I am sick of all the subtle references, and sometimes explicit comments, referring to the fact that they could deal with it much better than me. I have not slept a full night in over 5 years, and for the first 7 years when my eldest was younger. It is so stressful without their thoughtless comments. I don't need to hear the best way to talk to my dc, or how I should be careful with my youngest incase he shows signs. I know this sounds a little selfish, but this is how I feel. At the moment my in-laws are driving me bonkers, they ake stupid comments and keep on askig me if I get dla. WTF?
these are my children, and life is very difficult for them, and I am all they have got.
Sorry about the rant, but I am fed up of considering everyone els's feelings, I am exhausted and can't remember when I last had any time to myself, and I don't know what it is like to actually sleep.

can I just add something.
My DS is very severely, proundly affected by his ASD. He has littel useful speech and a whole raft of difficulties and behaviours which necessitate special schooling and will mean he will need lifelong care.
I still have to deal with people minimising his difficulties.
It is nothing to do with my family not noticing behaviours because there are traits - we have no history of any ASD or related disorder at all.

I think it is just to do with people making them selves feel better. It isn't meant to be selfish - it isn't intended to make life harder. they just find it hard to deal with and wish to minimise it so that there is less chance of being caught up in the maelstrom of your grief or upset.

If you say 'he is struggling' and they say 'gosh he is - how awful for you ' then you could unhinge in front of them and that is whatthey are deeply anxious to avoid.

I take comfort from the fact that they don't mean it. I have learnt several good ways to correct their false positives without being too rude . And I also try to remember that , particularly with family, they are also trying to get their heads round the factthat life may not be quite as they expected for someone that they too love

I think that some people deep down believe that the condition is just a label or an excuse, not realising the hoops that parents have to jump through to actually get a diagnosis. One of my sisters is a bit like this.For instance she is a teacher and apparently they have no chn with specific learning difficulties in the school where she works because they teach them so well.

That doesn't account for friends doing it though, eh? I think they just feel that it will somehow reassure you or something, or that you want to hear comforting lies, or that they feel disloyal agreeing that your child is 'defective', but that just turns you into the doom-monger. And sometimes if you say, 'No, he won't grow out of it' etc tehy look at you all shocked and hurt as if to say 'how could you be so mean to your own child' which really winds me up!

My theory is that the genetic componant of aspergers et al, plus the sliding scale nature of these things, means that in families some behavior that are typical to aspergers can actually be quite normal within the family.

Hence nobody understanding when you say it's because of aspergers (or whatever) - they remember uncle ron/ their sister/ their nephew/ cousin doing the same thing. Which to them means it's normal.

My friends do this, and my mother finds it very hard to accept that ds's eccentricities are anything but a manifestation of his genius
They mean well, but it constantly puts you in the position of doom-monger and pessimist, saying, 'well no he's not fine, or no, he won't grow out of it' which does NOT make you feel better. I recently had a massive row with my oldest and dearest friend because she would stonewall any attempt to talk about ds's problems or act as if she knew more than me. I told her that I worried about him day and night and being told either 'he's fine' or 'Yes, I could see at once he was autistic' was completely unhelpful.
With my mum I try to be tolerant as I know it all stems from loving him so desperately.

it's infuriating isn't it? my sister doesn't believe that ds should have a statement because she works with visually impaired kids some of whom haven't got statements - and "they really need it" (unspoken subtext "and ds doesn't")

sometimes I feel like screaming it's not just us - it's teachers/staff in 2 nursery schools, 1 primary and 1 secondary who've all had to deal with various problems - and LEAs don't just hand out statements just for the fun of it - ds has the highest level of statement our LEA will assign to a child in mainstream education!

Also, for what it's worth you are at a really difficult time right now, 4 to 6 yo is especially hard in my opinion.
Anger and exhaustion is really debilitating and affects how you function, be kind to yourself, no guilt, no blame you don't deserve it, ever!

Forgot to add, I've only reached this conclusion in the last 12 months after counselling. When my dd was 4yo I felt EXACTLY the same as you!! And sometimes I still do. It's so hard isn't it? I just sometimes want to scream, cry and throw myself around!

SammyK, I have a 9yo dd with ASpergers and I have incredibly supportive family members who STILL like to say "that's normal behaviour". I've come to the conclusion it's down to their pain at having to accept the fact that my dd is challenging and my life with her is very difficult. It makes them feel impotent and heartbroken so they try to reassure me (themselves)that this is normal. Instead of feeling angry at them I feel sorry that they are too finding it hard. This might sound like hippy dippy stuff but it gets me through the day and is better than feeling anger and rage and assuming they "don't get it". Msybe they do but they are having a hard time seeing you suffer?