Got THE letter last week, ASD.

(18 Posts)
NaggingNellie Sun 23-Feb-14 10:13:51

my 4 year old has been under assessment since 2012 , via playgroup, his social communication skills became an issue.
Having relatives and a lot of experience myself of ASD I noticed things from being as young as 18months,
There was a crossing of wires in the communication so this letter ended up on our doorstep with no warning sad
so reeling from that,
What i'm finding the hardest , most frustrating is the 'I don 't believe it' response i'm getting from people close to me, he's more high end asperger level, articulate,bright, inquisitive does seek social interaction but struggles.
I can't afford to live in denial why should they, as callous as that may sound, plus perhaps wrongly, it gives me the feeling that well if you disbelieve the diagnosis, you must think all his issues are my fault then.
sorry most of that is gibberish, just still a bit overwhelmed, final meeting in a few weeks.

Frusso Sun 23-Feb-14 10:27:58

I understand how you feel. 2 years on some of my family still make the same comments.
It's not callous to not want them to be in denial. But at the same time because they're not living with your ds, and dealing with the issues on a daily basis they will always have some level of denial/disinterest.

NaggingNellie Sun 23-Feb-14 10:32:06

its horrible isn't it, I'd prefer it if they just didn't care,
but putting forward explanations, imo is just a round about of pointing the finger of blame firmly at me, the person who has done all the hard work ..evn if it's unintentional.

brettgirl2 Sun 23-Feb-14 10:40:36

perhaps you need to tell them how their comments are making you feel? In a misguided way they are probably trying to be nice and suggest that maybe it will turn out to be wrong and all will be fine in the end?

hmm oh it sucks, watching their Muggle brains work and seeing the implications they haven't even realised they could be making.
Yes, work out the key sentences you need them to understand and make sure you get them out before they have a chance to respond. Most people try to think of something positive off the top if their head, it's not often how they would honestly feel if they weren't totally ignorant. If you can get across that the DX IS a positive thing but still a sad watershed for you and yours - roller coaster of emotion, innit?
PS welcome to the club, has your halo arrived yet?wink

http://www.aspergersyndrome.org/Articles/Especially-for-Grandparents-of-Children-With-Asper.aspx

Frusso Sun 23-Feb-14 11:07:00

I cut alot of people out after dds dx, because they just didn't "get" that it wasn't going to go away.
For me, I'd had a long drawn out process of getting a dx, so in some ways I'd already been through the denial stage, whilst it felt like everyone else was ignoring it and getting on with their perfect lives, that's how I felt; bitter huh? so when dd got the dx it was a relief. But then everyone else went through the denial stage.
With are you sure and what a shames and oh she's not that bad.
Now I can see that they just didn't understand about what ASD is. Somebody says autism, and misguidedly think of child with severe autism, or with aspergers, and fail to see the whole spectrum.
It is frustrating. You can try and educate the people that matter. And try not to read anything into the comments. They are often empty comments from people who mean well but don't know what to say.

Faverolles Sun 23-Feb-14 11:28:11

I wish I was brave enough to post that link on FB smile

Ds doesn't have a formal dx yet, but the paediatrician says there is enough to go on to suggest high functioning Aspergers, but there is a two year waiting list.

He's fine at school, masks it when he's stressed, but is a nightmare at home.
When he's with my family (sees them once or twice a month), he appears fine, so they believe that he's fine, and possibly we're being overly dramatic about his behaviour at home. The don't see the meltdown that will inevitably start in the car on the way home.

Family don't seem to get that this is what causes problems, and try to give me a load of home truths about the size of our house, not having enough money etc, and it really doesn't help. Nothing I say about my children and the things I know they struggle with makes any difference, so I have started avoiding them.
It's sort of reassuring to read that this isn't unusual. Reassuring but very disappointing.

PolterGoose Sun 23-Feb-14 11:48:15

This book is really good at explaining the parents' view to other people, it's quite short, but it is a very good and succinct introduction.

NaggingNellie Sun 23-Feb-14 12:26:56

Some very good posts on here, thanks

toilet training is a huge issue, I am hoping the dx is a gateway to getting this done and dusted once and for all.
this month its been a year and still will not poo on the toilet sad I'm just so depressed and what makes it worse is actually the judgemental home truths, to the point i've started avoiding one person.
I hoped the dx would silence the rude people but of course they have to go through the denial stage too, i suppose its slightly selfish of me to expect them to skip it , just because like Frusso i've been there already ..a long time ago.
My DH interstingly was a 'there's nothing wrong' is started to point out, 'oh i see what they mean with .....' in daily life but its still sad.
I'm also afraid of having to cut people out if they don't 'get it' in the long run.

Frusso Sun 23-Feb-14 14:01:17

Nagging, my dd didn't potty/toilet train until just before she started school.

NaggingNellie Sun 23-Feb-14 14:23:41

mine is 4, at nursery starts full time in sept
im dreading it tbh.

Frusso Sun 23-Feb-14 14:43:58

Does he have a statement?

MisForMumNotMaid Sun 23-Feb-14 14:58:06

My favourite comment from my mum when talking about DS1's statement post autism diagnosis. is 'it just shows what you can get people to give you when you're articulate and determined. Of course we all know that really he just needs a firm hand'.

My other favourite from my mum is 'he's not Autistic, he's lovely'.

He is lovely, no denying that AND autistic.

Your post interests me, particularly the toilet training bits. My DD (youngest of three) is just three has many traits and just getting into diagnosis. I needed to get her into some mother and toddler groups for six months just to work through my concerns for myself. She is a nightmare with pooing. She's got the liquid side for a while but still wears a pull up.

I took a long time to realise I was giving people credit for knowing a lot more about ASDs than they did - and they certainly didn't know as much as me. I realised I was getting quite technical and all they could even imagine was Rainman and being confused because my kids didn't fit that.

hickorychicken Sun 23-Feb-14 18:34:28

My inlaws are like that in regards to dd1. Its fucking infuriating havng to explain why our day to day routines (apart from work) revolve around her needs. ive had to justify DLA to them too, makes me so sad.

hickorychicken Sun 23-Feb-14 18:35:33

*sorry, explain over and over.

brighteyedbusytailed Sun 23-Feb-14 19:02:39

its daft isn't it, and soo draining, especially in this day and age people don't really have an excuse tbh.

i told my inlaws today which actually was less strenuous than my own parents, they just kept asking 'what does that mean then?'i.e in terms of how it will affect school , support, which i think is fairly normal.

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