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

[UserOO7]

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

I think there should be different groups, the problem is in my case I never knew where I belonged. Ds had difficulties from very early on but I wasn't believed and it was put down to my parenting, he was verbal yes but very little that came out of his mouth made sense, late walker, never engaged with his nursery friends or later on school friends, bit and obsessed over particular children to the point where school didn't know what to do with him, never played with toys, and then he was violent which got worse in his early teens, he took a knife to his baby sister amongst other things. He was diagnosed with aspergers finally at 13 after receiving an adhd diagnoses at 6 but he is seen as high functioning because he can walk, talk and has no toileting issues. Having said that I don't think his issues compare to those with more severe forms of autism and attending a group with those with children on the more severe end of the scale would not have been helpful to me either nor the other way round to be honest because his needs were so different

He is 17 now and still a challenge but he's done well in school and has a part time job, doesn't like to be reminded of his autism, would never make friends with other kids with autism so going to any group wouldn't have been helpful to him anyway lol

In our area all support groups and courses are aimed at children with any neurodevelopmental condition. So there's often lots of chat about ADHD or dyslexia which isn't relevant to me.

From a commissioning point of view I understand why though - there's often some overlap of behaviours in these conditions and they also commonly co-occur. Ultimately I guess it comes down to money doesn't it.

I've noticed lots of parents at the groups have more than one child with ASD (myself included) but they're often very different. Or some have one with ADHD and one with ASD. In a way it's good that we can talk about our children and get advice without having to attend separate groups.

HFA/ADHD/dyslexia overlap - not sure that talks about dyslexia are particularly relevant to non-verbal kids on p levels though. That's where you need to separate out according to functioning.

Talks about dyslexia not relevant to a parent of a child with HFA that doesn't have dyslexia either.

Functioning can change over time though. And parents can have more than one child on the spectrum with different levels of functioning.

I'm not saying lumping everyone in together is perfect or that it works for everyone.

But can also see why people commissioning services might make this decision, and why it might work for some people.

I think that's exactly the sort of talk that would make someone in the OP's situation want to jump if a bridge though (or maybe that was just me?!)

The presence or absence of severe learning Iearning disabilities really changes thing.

In our area, the newly diagnosed with ASD course is only for preschool age children and it pretty much rips off follows the Hanen More for Words book. Having dug around the LA website, they are piloting a primary-age workshop but that has to be done in conjunction with the school -so the school express an interest they want the training course first. Not sure there will be much uptake, as there are a lot of smallish primary schools so I doubt there would be enough of a demand per school, but plenty of children in the total area.

OP hasn't mentioned severe learning disabilities though, only ASD.

But I agree that makes a difference, perhaps there should be separate provision for people who straddle ASD and LD services?

FWIW I have a 3 year old with language delay and ASD and I don't feel like jumping off a bridge when for eg. dyslexia is talked about.
But I also have an older child with HFA so I appreciate that it's not all completely new to me which probably helps. I'm not sure how I'd feel if my DS had been born first, maybe I would feel like jumping off a bridge.

My biggest bugbear is not being able to access the courses in the first place - because they're all the day and I have a 3 year old to look after!

I'm the OP... this has run away with more than I can answer.

Regarding LD, I don't know but I guess some level- we've had near to no support. Not a single therapy session for anything. Her receptive language is 12 months though as assessed in social comm. she's little, it may change of course but ultimately parents in this group are giggling together over memories of a nearly 2 yr old using words like 'saunter' whereas dd doesn't generally acknowledge people let alone chat.

I left today early, the doctor and a parent spoke of how Aspergers etc can be a gift in a way... decided we were on different wave lengths and I left the course.

I think to those questioning the rights/ wrongs- this is about my feelings and how I'm coping with it I guess. I'm human.

Thank you to those who've shared stories, I've realised from this thread in a weird way the opposite of the group effect- that there's a lot of joy to be found in dd. After leaving early I cuddled her to sleep and she fell asleep smiling.

I don't know how some of you cope, but the obvious answer is you just have to. I wish you well for the future and happiness

Just to clarify, I think I've felt some of the loneliness go away over wherever she is at from this thread.

And you user - and ugh at the gift stuff. I just remind myself that autism isn't one condition it's many & those celebrating difference presumably have a very different condition from ds1.

Ds1 has been able to make very clear that he does not like being as disabled as he is so I feel no guilt for not celebrating something he sees as a disability.

I hope User that you do find some support from other sources. My main source of support has been another parent with a child with severe learning difficulties. Our kids have different diagnosis but they are at a similar level of functioning. Life is hard enough without groups like that one. The autism as a gift stuff is an anathema to me. I love my children who both have asd, but I see their autism as a bloody nightmare. There is nothing quirky or endearing about it tbh though I know there are plenty of people who see things v differently to me.

OP is there any SN toddler groups you can access? They're often run by children centres.
Although the children have different disabilities you might find you're facing similar issues, and have more in common.

And I understand how you feel re: lack of support. Services have been cut back massively in my area. I just keep getting signposted to courses that I can't attend. I don't want a flipping course anyway, I want some direct help and support for my child.

Lonecat, yes but we can't attend due to a no siblings rule... don't get me started on them!

I've had 4 letters for courses in a fortnight! One after the other, yet not a single moment of direct support in her life. Physio discharged with advice as it wasn't changeable, salt haven't seen once

Each area is different, but where I am both the NHS and the LA have an Early Support service - it sounds like this would be more useful as it is supposed to bring together the services around your DD into actual action for her rather than a never-ending list of parent workshops. Worth a dig around your areas NHS and LA website.

When ds was diagnosed (age 7) we were given a list of various groups and told that it wouldn't be worth going to them, but the workshops for kids on various topics might well suit ds's interests and we could meet other parents with children who would be most likely to have been through some of the same issues. Also said you have to book said workshops as soon as they are available, so haven't actually done any.

I hope people with children with more severe problems are finding the various groups useful.

Can you get portage OP?

She's too old for portage, and I took her out of nursery some time ago. Tbf we are generally happy and moving forward from our own starting point