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 have no experience of people saying classic autism is easier. I have seen comments on a Facebook page though to a mum who was asking for advice about their child who was self harming and battering them saying at least the child is hf and suggesting it isn't REALLY autism because when they saw the child he seemed normal.
I realise that the op isn't talking about drop in sessions I just think that sessions focused on specific areas of difficulty would be likely to be more useful than just being sent to a group because your child was diagnosed on a specific date.

It is the you have it easier because your child is less intelligent/lower functioning stuff that irritates me the most
I know jj in rl though.our easy to manage children have sat in the same room together
Pmsl
But tbf they were very easy together maybe we need to get a room

Do you know they aren't Dixie? Because that is a worry I have daily. I've no idea if my ds is high functioning enough to be able to live independently. He is in mainstream school now but I don't know whether he will be able to manage mainstream secondary school. Or go to school alone like his sibling will. He is very naive at the moment - maybe that will change but if it doesn't he will be a very vulnerable adult and one that I fear will seem OK enough to be completely overlooked by services once me and his dad are gone. He has an older sibling which is some comfort to me at least.

That's hard. I have two dc with autism who are 8 and 4. They're obviously very different because of their ages. I wouldn't compare nt 8 year old with an nt 4 year old. I find support groups hard when people have older kids as the challenges are very different. The spectrum is so wide and I found I didn't have a lot in common around issues faced with people whose kids were older. My youngest doesn't talk so I'd probably describe as low functioning my 8 year old moderate im told. It's all a huge worry and I'm frequently scared about where their journey will take us.

Unfortunately once someone turns 18 without capacity parents don't even get to make the decisions. Professionals make them.

I think this thread goes to show exactly what the op has said. That experiences are vastly different. I know when I speak to parents of hf kids that they have similar experiences to me of being told their child seems ok, doesn't look autistic. The expectation, even from teachers, that they should be able to switch off their autism at will. The feeling from others that we have no problems because they are hf and, actually, are they even autistic because all kids have tantrums sometimes. And we all fear that they will be overlooked for support and left to manage when we are gone. Obviously the parents of kids with a severe ld accompanying the autism have different worries/experiences. Sitting and listening to an hours chat about using Ipads to communicate is of no use to me. Sitting for an hour listening to information about sensory integration therapies may be useless to someone else. Maybe there could be a topic covered each week and parents could choose whether it would be beneficial to attend?

I'd probably feel awful sat in a room listening to people say their verbal asd kids talked too much or to strangers because my problem was different and I'd love to hear my youngest talk. But for them it's obviously a big challenge. With my 8 year old we've had people say she doesn't look autistic 😕 But she has ft 1:1 in her mainstream school. We don't experience violence but a lot of meltdowns and anxiety. So it's all different. I find I don't go to groups because the difference is hard. I went to one and there were two kids my four year olds age both girls as well. One was propped up on a board and being fed and the other was in a frame. The mother of the little girl being fed said she'd likely keep her in nursery as she wouldn't cope with school. My dd was running around, climbing, feeding herself and using the loo (though is non verbal). Just because we had the disability in common didn't mean our challenges were the same.

I am hugely envious though of those who have children who cooperate. Salt don't want to know us, dd doesn't fancy sitting and reading with me, engaging in games etc she'd rather be playing with water or jumping off our sofa. At the moment I feel achingly lonely.

Do come over to the Sen boards on MN though. There's a thread on there about starting school this year and lots of useful advice and support.

Mainstream schools just don't have the expertise or resources to deal with the disabilities they are supposed to accommodate now. Teachers just tend to put difficulties down as wilful misbehaviour with the reasoning that if they can do X fairly complicated thing then of course they should be able to do Y very easy thing.
MsQueen It's a shame that you don't feel you can get to groups. My friend is going through similar. She feels that the specialist groups tend to be for kids who have very severe needs but she also can't access regular kids places either so just stays at home most of the time.

It is the word Autism, if you remove the word and say the child's hardest symptoms it would be a different conversation. if a child is diagnosed with severe depression/ anxiety no one would ever say to a parent "well a child with a low IQ has it harder"and vice versa when I drop autism and use severe learning difficulties no one has ever said "well at least he has not got severe depression". Maybe lack of money, lack of resources and the fact it can be difficult to judge the child's future in the early years leads to some of the comparisons.

Oh devilish / jj. I'm so sorry.
Was it transition to adult services that screwed you ?

We have been a bit luckier with Pagboy transition than we expected but that's exactly what it came down too - luck.

It's not a cure all but we have deputyship for Pagboy.
It's almost impossible to get deputyship for medical/health but we sign off on everything financial for DS2 which obviously now includes his care.

If you can get deputyship I would strongly recommend it. It gives you a much. Stronger hand at transition.

deputyship basics

www.gov.uk/become-deputy/overview

Sorry - hopefully that link works.

I'm not sure if everyone knows about deputyship so in case anyone doesn't that link includes the basics.

Yes agree bouls. Although I have been told that at least my severely autistic son won't get depressed. Unfortunately that wasn't true and we had a recent year/18 months of him being catatonic from depression (or maybe he was just catatonic - he was getting stuck at thresholds a lot).

Dixie don't worry too much - it's all about relationships - choose the right providers & you will not be shut out. It was a very big fear for me - in fact we are still central to any decision making regarding ds1. Ds1's biggest risk was emergency provision, but a very good SW kept him out of that & our relationship with his providers is extremely open, honest & non-defensive - it couldn't be better. Like everything it's about finding the right people. A little over a year ago I didn't even know the sort of support ds1 has even existed or that the type of relationship we have with his providers was possible. Ds1 came very close to something very different & we came very close to having no choice - but the professionals & services around him did pull together to do their utmost to ensure that didn't happen. People were very aware of what was at stake & did care.

Pag - no (still a child for a few months) unfortunately ds1 completely disintegrated. That was maybe due to epilepsy, but maybe other factors as well (such as catatonia). He is better than he was now he has a huge care package but still very unstable.

Dh knows a lot about deputyship in his day job. Not sure there's much point for ds1 as he doesn't have any money & I am his appointee. I do know a few people who have managed to get health & welfare - but I suspect they would be easy to challenge if a disagreement arose

Oh, I'm so sorry. That all sounds so difficult for you all. Xx

I totally get you op. It's a bit like general toddler groups. The assumption that if you have a 2 year old you will find talking to another parent of a 2 year old utterly helpful. Not so.

Another thing that makes me is the belief that some professionals have that you can stick kids with ASC together and they'll all automatically be friends. Cause they've all got autism you see, they can discuss how it affects them.

Thanks Pag. A few years ago when ds1 was doing really well I assumed he could stay with us until mid-late twenties then have a slow transition into supported living. He was producing long comments on his talker, going everywhere with just me & building lovely friendships with his brothers. Then, very quickly he was unable to even ask for a drink by handing me a cup, he was in a harness in the car behind a screen and unable to even be in the same room as his siblings.

But - we have kept him out of an inpatient unit and he is still at school and he still has very close family ties (which are very important to him). He is very very lucky. I hope that luck continues.

His communication is slowly coming back - not back to where it was but a lot better than when te lost it all completely.

The speed with which he lost everything was frightening.

Please feel free to pm me. My son sounds similar with speech delay and sensory issues. He was a diagnosed at 4 (6 months ago) buy I have loads of support. I am also a SEN Teacher who teaches children with Autism so I am on both sides of the fence.

Sometimes it's just nice to chat to someone without having to explain.