annoyed!

[babyinarms]

Just wondering has anyone else come up against this? When trying to explain my DS issues to my DM and D Sis ......they keep saying most children do that.....oh my dd does that....now my DS is newly diagnosed aspergers....if all kids do these things why is mine classed as having ASD?.....it's in black and white from the multi disciplinary team....I feel like shouting.....I'm not imagining this or making thus stufff up....its real....it's a real issue! !!!
Feeling very let down and feel they are trivialising everything! So annoyed right now ...and I could do with some support not mindless comments that all kids do that etc!!! Sorry for rant but had to say it to someone!

Definitely. All the friends I talked to when I was worried totally downplayed my concerns. She'll grow out of it, totally normal, just a phase. Etc etc. even my dp for quite a while. He was just humouring me "get it out of your system" when I took her to the paed.

To the extent that now I haven't told anyone except my dad about her actual aspergers dx. Initially I thought I would tell them but when ever I imagined the responses I couldn't do it. Just said "needs speech therapy" instead.
At least dp is on board now. As a passenger.

It's enraging. Sorry you're going through this.

Thanks Friday. Sorry to hear that you feel you can't tell those closest to you they should be the ones who help and support you!
... along the very lengthy process I've had to endure these comments putting doubts in my head at every turn....ah it will all just click one day......I wish!
I thought that when a diagnosis was made that attitudes would change! It's only family that know....but it's all the same comments. ....sure every child has a label these days.....thats what the MI L said....aggghhhh!!!!
Anyway I think I'll just stop trying to explain and just say everything is fine.smile politely and walk away.......counting to 10 and taking very deep breaths!!!!

I get it.
Ds doesn't have a diagnosis, is on the waiting list for assessment, but I am going mad from the comments from family.
I don't have many friends, I've always relied on family, and it really hurts that they they believe Dh and I are crap parents rather than there being a problem.
One family member makes a point of having a go at me for creating problems, and as much as I know I'm not (at least, I hope I'm not!), it seriously makes me doubt myself.

I read a good article aimed at grandparents, I'll see if I can find it for you.

There's also a book called Learning to alive with High Functioning Autism which I bought for my parents - there's a whole chapter on munchausen's by proxy (which one family member kept making veiled comments about, and tried to get another medically family member on board with). My parents used it to armchair diagnose others in the family, but it got the message across and they have been much more supportive since.

Friday, what you say about your dp humouring you, that is exactly what I'm getting from Dh at the moment, going along with everything because it'll make me happy , and I totally get the comment about being in board as a passenger.

Especially for Grandparents

Dishwashet it's so hard to stay calm when all this is being said isn't it?
I know we only have the diagnosis 2 weeks so maybe I'm hyper sensitive also!
I will try and get that book and see if it makes a difference. Thanks so much.
I hope u get ur answers soon.....it's such a long.worrying and frustrating journey.....now we have an answer we can move forward.....eventhough I thought I'd be fine I can't believe how weepy I am about it!
Maybe it's cos it's been such a long road...it's a mixture of relief and worry!
DH was always on board but didn't really like to talk about it so much. ....we'll just see what happens....was his motto! The last 2 weeks he's been super and just as annoyed as I am with these comments so I'm lucky to have him on my side or I would start thinking I'm the problem!
Maybe when u get a diagnosis your DP will be the same. I don't think they can deal with it until they know it's real!
Thanks again and I really feel your frustration!

"We'll just see what happens" Are they the same person? :o

I feel terrified at the moment because we've taken the first step to go private. I keep thinking I'll feel ok if/when the time comes, but you're right, I don't think any of us have any idea how we'll feel.

Hope things improve quickly for you!

OP I've come up against the exact same thing. DS is as yet undiagnosed but any friends or family I try to speak to about our difficulties gives me the same old crap. Unfortunately I've had it from the HV too and at his multidisciplinary assessment the paediatrician was pretty much the same..."he's so bright/articulate/adorable can't possibly be on the spectrum" - makes my blood boil as much as it makes me wonder if I'm imagining it all. We've not had a report back yet but I'm not particularly hopeful.

that article for grandparents is amazing! thank you for posting it dishwasher!

Dishwasher not sure how I missed that artical you posted for grandparents. It's amazing! Thank u so much!
Nice cup....I had an ed psych convince us last year that Ds could not possibly be on the spectrum as he was not 'quirky' enough. Sure enough I was very relieved. She referred him back to speech and language.....who suspectef he was on the spectrum. ( 2 nd salt to say it). She referred him for assessment and here we are 15 months later with a diagnosis!
So it's not just joe public who are ignorant to the facts but the professionals also!
Good luck nice cup. I hope it works out for u !

Dishwasher.....they sound like peas in a pod

"he's so bright/articulate/adorable can't possibly be on the spectrum"
Not just awful because it's so dismissive. Also reveals really horrible assumptions about people with autism- would a diagnosis really be more appropriate if the dc coming for assessment seemed thick/silent/unlovable?

We've been discharged from SALT unfortunately. They think DS's social issues can be dealt with at nursery. His speech is pretty advanced but that doesn't mean he understands everything he says. The concept of today/tomorrow, this morning/this afternoon for example he needs explaining every day and his words get 'lost' when he is upset.

This is the thing exactly - apparently some people (HCPs included) have a very narrow view of what ASDs look like and can't be swayed. I feel I have a very long fight on my hands

OP I'm not sure how much this will help but I think the reasons for people's reactions like those you mention are 1) they want to make you feel better and somehow think being hopeful will do it and 2) they don't actually know what to say.

The best thing someone has said to me is "he seems just fine to me...I mean fine like a king, but you know him best" - that helped me feel confident in both his lovely nature and my feeling that something isn't 'quite right' - but honestly it's a learning curve, if it were one of my friends and not me I'm not sure what I'd say

Because dd was great at masking and not disruptive, I had 10 years of both school and the family saying I was delusional a fussy mother etc. so I know how hard it is to deal with all of the stupid comments. The worst is after dx still having no support in the family from the people the dc and you really need to be supportive.

Not only do people not 'get' LD, in my experience they really don't want to know. I had the bright idea of buying an easy to read non-clinical book which at the time I thought showed dd's condition and explained the whys and wherefores of behaviour and communication and also explained why the interventions worked etc. I spent quite a lot on half a dozen copies and gave them to the family members (all educated professionals) that I hoped would ask dd to spend time alone with them and the other copies went to school LS. Not one person I gave it to read it

In this situation too
I think it happens for lots of reasons
Relatives go through the process of anger depression bargaining denial acceptance too
(And some get stuck in denial!!)
So those who you need support from are actually at different pages to you.
Relatives minimise to protect you from pain. They don't like to see you hurting so try to do something to stop it hurting. Without realising it makes it worse.
Friends minimise because then they don't have to deal with it. Or bother helping.

It's really annoying.

The "fine like a king but you know him best" comment is really lovely

Nice cup thats a really nice way for your friend to respond! You must be so frustrated. My ds isn't your stereotypical asperger child either. He is a great mimicker and covers up well. He is quiet and well behaved also but what people don't see is how 'lost ' he is in conversation, how literally he taked everything, how he only converses in questions, how anxious he is.....I could go on. And deep down I know family mean well but maybe I need to lash out at someone. ....and that's not right either!
Blank look. Like ur dd my ds is a good little actor. Having read Tony Attwoods work I think ds meets more of the aspie girls description.....keeping homself unnoticed and under the radar as much as possible. So sorty ur family didn't read the book.........hope u have others for support.
Yes system I agree.....everyone has their own worries I suppose too. Im going to pass on the grandparent article that dishwasher posted and see if any lights go on

"Relatives minimise to protect you from pain. They don't like to see you hurting so try to do something to stop it hurting. Without realising it makes it worse."

^ This describes it perfectly.

I ended up feeling guilty because my dsis was feeling hurt herself over what we are all going through.
I don't really have the energy to cope with everyone else's feelings on top of managing my family, but that makes me selfish.

I soooo know what you mean. Had exactly this with my mum this weekend. DS is nine, he has hemiplegia flowing a stroke, and learning difficulties.he has a statement and goes to a specialist school. My mother asks me how schools going and I said better this term, blah blah so she says oh good, perhaps he's .....GROWING OUT OF IT and will be able to go to a 'normal school' soon!!!! When I voiced what I thought of her opinion she told me I am negative!!!! grrrrrr!

Not selfish at all dishwasher. You have enough to deal with. She needs to be strong for you although it is good to know she cares.. but I know what you mean.
Bigbird u sound like you have a lot on your plate! I presume you're Mum is stuck in 'denial' as another poster said earlier!I could only imagine how that makes it so difficult for you....sending you and .

Struggling with relatives in denial

While I can see it's just part of their acceptance process, it still leaves me feeling rubbish

It's not acknowledging any of the hard work I have put in to getting a statement, doing the early intervention, the difficulties with school etc etc all the sorts of stuff we all have to contend with

I wish I could pretend it was all just delay it would be a lot easier
And yes he is doing more now than he used to but this is not evidence it is just delay but shows the things we have put in place have helped a bit

It upsets me as it made me doubt my gut feeling, made me wonder if I was putting him through something needlessly. Has made everything harder than if people had said things like the lovely "king" comment above.

It's very complicated.

system I can only imagine what you're going through. .as previously stated we don't have a diagnosis yet and it's looking unlikely we'll get one so I've not discussed my concerns in detail with anyone in the family yet. It was my lovely friend who made the 'king' comment but unfortunately she's the only one..anyone else I speak to (friends/family/HCPs/nursery staff) either looks at me blankly like I'm imagining it or is full of excuses for his behaviour or wants to give me parenting advice on how to 'fix' him.

you're right, it completely undermines all the work we put in to help our DC; the DLA application alone took me 6 weeks to complete (although to be fair having been awarded it and having a copy to remind me of all the extra work I do is the one thing that keeps me from doubting myself sometimes) - that grandparents article really struck a cord with me because we DO do so much more to try and keep our children from overloading and to try and make them happy. I just hope that all these responses are part of the 'acceptance' process and will diminish in time. Don't doubt yourself, only you know what your lives are like behind closed doors and I can guarantee you're not imagining anything!

I know system and nicecup....just when u need it most there's no one who understands :(
Thats why it's great to come on here and actually hear that othet people feel the same and we're not going mad .
Speaking of nice things people say.....I've just told ds music teacher he has aspergers. He was a bit taken back but said.' I always thought x was just his own man with his own way of thinking. Every child is unique so I try not to compare....but I've always felt that x is is own man. And the constant questioning intrigued me '
Thought that wad lovely as he accepted straight away there was an issue but put in nice words.....I'll always thank him for that

By the way the music teacher is not school related its an after school thing.....so he had no idea about the ongoing assessments.....just said I'd tell him so he'd understand why ds needs more time to take things in and might need extra explanations of things othet kids get more easily :)

Just to say that I know exactly how everyone feels. My mum constantly says that dd "will get there in her own time" or "is coming along just fine" whilst at the same time knowing that we have DLA for at least 2 years, have applied for a statement and that she is attending a school for children with learning differences twice a week.

I think it is definitely out of denial and a desire to make me feel better. I know that my mum would never say anything that she thought would upset me or undermine me, but it is difficult not to feel like that sometimes.

I agree with Dishwasher that sometimes there isnt the energy to manage the feelings of others but I dont think that makes you selfish. I now try to let my mum think about dd in the way that she needs to. It's not going to stop me doing what I need to to help dd. And if dd suddenly "gets there" or grows out of all of her issues I'd be happy for my mum to turn round and say I told you so!

Thanks for posting that link Dishwater - I sent it to my mother and she found it really helpful. I know she has struggled to understand the issues because she lives at a distance and has had her own problems to deal with over the last couple of years. It is also true that I tend to shield her from the worst problems but then expect her to understand the severity of the issues so have really got myself to blame for some of the lack of understanding.