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To think this parent mix for an autism post diagnosis group is insensitive?

(145 Posts)
UserOO7 Wed 01-Feb-17 15:33:37

This only applies as it's only for newly diagnosed children, obviously an age mix in other autism groups could be great for support.

The majority of parents are of those aged 8-14ish, but a few have children aged 3 or just four. The older ones are dominating a bit and are generally in the relieved frame of mind, they can move forward. The younger ones are obviously more severe and also academic unknowns.

Aibu thinking it's a bit rough to sit through lots of "we never knew as they talked at 1" or "he's just amazing at maths" when you are wondering if you can access mainstream/ talk normally/ speak well?

Obviously we all have difficulties, but it's grim being the lower end of the group. All discussion about talking it though, using academics to build confidence... when you want to ask how to stop licking people/ choose a simple choice or say hi. I presume the older ones as a rule are more able if diagnosed late, those older but in a similar place were also diagnosed under 5?

It's a time you can feel a bit crushed, wondering what the future holds. Hearing others with the same label not relate to speech delay or global delays isn't much support to speak up and bare your soul to. We have such different needs. I don't know if this is a quirk of the group, it so happens that the older ones are in mainstream and talking well, or if this is a problem they could foresee each time. It doesn't seem much fun though as they haven't checked it for the younger ones. I don't want to talk right now if Asperger community identification or diagnosis schedules in detail, I want basic basic and possibly a cry to be blunt. There was a discussion, were you given the diagnosis in front of your child and if that was right for half a session... well yes as they wouldn't understand if we'd say them down and TRIED to tell them.

Obv feeling a little sore. Go easy

ExplodedCloud Wed 01-Feb-17 15:41:36

I'm a member of a support group for ASD. We did have one episode a while back where an admin did pull everyone up over remembering that ASD is indeed a spectrum and to remember the parents at the severe end. I can't remember what prompted it. They're very good at moderation though.
I wonder if it's worth asking if you could have a sub group for younger children?

UserOO7 Wed 01-Feb-17 15:44:31

It's it's only a short CAMHS post-diagnosis 10 week group so I can't see a change for us, maybe feedback could make a change for others.

I guess the bulk simply will be older due to low numbers under 5 ( think 2 poss max a month can be due to clinic times, of which neither may be? Whereas Camhs is a bigger thing post 5)

SloanePeterson Wed 01-Feb-17 15:50:47

I have to say, as the parent of a son who was only diagnosed at 7 I'd have found the group and the discussions you're describing incredibly helpful. There's no follow up from CAMHS here, it's pretty much, here's your diagnosis, good luck with that hmm. And yes, I'd have spoken at length about my relief. Look into the early bird course, it sounds like it might meet your needs a bit better x your paediatrician should be able to refer you

Pagwatch Wed 01-Feb-17 15:51:18

If they are teenagers and Newley diagnosed then they would certainly been totally removed from my son who was so severely affected he was diagnosed before he was two.
Honesly, I would not want to attend a group where the focus was entirely upon the majority, more able children. It would be irrelevant to me and I would have hated it when DS2 was younger.
Is that the only support group available to you?
Is there no one hosting the group that you could talk to about it. It would be much better to have two small groups to be honest.

ExplodedCloud Wed 01-Feb-17 15:51:38

Ah. Sorry. I was thinking it was an online thing on an on going basis. Mine's a fb group which is local and very useful. See if your area has one?

UserOO7 Wed 01-Feb-17 15:55:19

Well Sloane I can see how it's helpful for them, and would be for you. But lumping us all together? There's probably more non Autistic children I can relate to a randomly selected group than in this group.

It's this or nothing it seems.

Our area doesn't have early bird.

UserOO7 Wed 01-Feb-17 15:57:00

We were referred to CAMHS for additional issues, so this is what we get.

The doctors only direct input this week to me after another parent expressed surprise at what dd does was "oh she's so young, she will learn in time". Not helpful really

Pagwatch Wed 01-Feb-17 15:59:38

User007

This might seen like an odd idea but re the behaviours etc, have you got any really good special schools near you.
My son went to an ASD specific special school and they had a bloody brilliant outreach teacher who was a mine of info.
Would it be worth seeing if any if the special schools know if any support groups.

I know exactly where you are coming from.

Pagwatch Wed 01-Feb-17 16:02:14

Actually sometimes, just sometines the parents of more able children are very far from helpful because they can sometimes assume that any abilities their child possesses will either naturally occur in your child or, worse, is due to their just adopting great strategies.

You see it on here sometimes "well my son has ASD but I still make him say please and thank you". It's not easy to be around in the early years.

UserOO7 Wed 01-Feb-17 16:02:46

Dd is not in school, but I have asked about outreach

Oblomov17 Wed 01-Feb-17 16:03:51

Very tricky. You are at a very difficult stage.

many people in our area attend the EarlyBird course because they have primary school children, who have just got a diagnosis. Many in year 1 or 2 of school.

you are not in the position so it's very difficult. although you can learn things from them - tips for circumnavigating the school system, maybe you're not quite in that position yet, understandably so.

tabulahrasa Wed 01-Feb-17 16:04:12

What you want to suggest to them is that parents are referred to this group at assessment, not diagnosis because the chances are that they've had a much longer diagnostic process and yes have had possibly years come to terms with it. You'd have more in common with parents at that stage however their DC presented.

Btw though, those comments about their DC's abilities...they're not actually about that at all, I felt like the crappest parent in the world for not noticing my DS is autistic for 7 whole years, I told everyone how bright he was, how 'normal' he seemed because I was feeling so terrible.

UserOO7 Wed 01-Feb-17 16:05:14

Exactly pag! Or I high expectations.... when dd doesn't even sodding understand the language used to deliver them

MoMandaS Wed 01-Feb-17 16:05:51

flowers, OO7. That must be so frustrating. Have you looked at the SN talk pages here? If you post about anything you're finding difficult there, many of the people who come on to support you will have direct experience of the issues and feelings you're facing.

UserOO7 Wed 01-Feb-17 16:10:06

I think tabula there are kids who you can not pick up, and kids who the whole community has clocked onto at 2 when they are non verbal, flapping, screaming and spinning constantly

UserOO7 Wed 01-Feb-17 16:11:03

I know I've personally as a teacher missed a few despite training, so it's nothing to feel crap on

FrayedHem Wed 01-Feb-17 16:11:11

So the criteria is based on date of dx rather than age of child? I would raise that with the organisers. I know they will want to have max capacity groups as close to dx as possible, but I think it does need a further cut-off so the focus topics are more relevant. It would probably be tricky to split it further e.g. by level of severity, but at minimum a preschool-primary-secondary split would be a better use of time imo.

Boulshired Wed 01-Feb-17 16:12:07

It is difficult, I was pointed to a support group for children with severe learning difficulties instead of Autism. I found it was awkward at general autism meet up for all concerned as advice was so dependent on the child. The mainly common ground was sensory but even then DS2 is hypo sensitive.

Owllady Wed 01-Feb-17 16:13:25

I think those of us with children on the more severe end of the spectrum tend to avoid asd groups, precisely for this reason.

We went to a portage group when my dd was title. It was run through the cdc. Is there nothing like that?

flowers it's such a difficult stage

UserOO7 Wed 01-Feb-17 16:15:14

I've felt more comfortable with LD parents I've met so far to be honest, there is the communication support link

FrayedHem Wed 01-Feb-17 16:16:14

Our area only offer their own post dx ASD parenting course. When I went, all but one were parents of preschoolers and I think the parent of the school age DC dropped out, as it was a lot of Hanen More Than Words etc

UserOO7 Wed 01-Feb-17 16:16:58

We did actually go a CDC play group at one time for another issue, they were generally younger but I could ask. Thanks (she had an unrelated difficulty too)

MuddlingMackem Wed 01-Feb-17 16:21:00

YANBU.

I think that in our area they now run Early Bird sessions for parents of older children, say 10+, so I presume they must have separate sessions for younger children. Whether or not they run separate sessions for pre-schoolers and primary age I don't know though.

Boulshired Wed 01-Feb-17 16:23:33

I do remember a horrible moment at an early birds group when we shared videos and the realisation they all had verbal communication it was like daggers in the heart. It was stilll too early for me to deal with.

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