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 know exactly how you feel OP.

I went to a group similar to early bird - not a support group as such just one to help manage behaviours etc. Even though our dc's were all around the same age, my ds was far and away the most severe out of all of them and it made me feel absolutely shitty and frustrated. I came away from every meeting feeling like it had been completely pointless as there was no advice they could give me that was actually helpful or applicable to ds. That and the fact that all of the others were couples and I was the only LP who had no emotional support. It just made me want to cry.

I also felt it would have been more appropriate to have a group for the more severe children, I think we would have all gotten more out of it.

I actually totally empathise and my son has asd but would fall into the goes to ms group.
We have our challenges but they are different. To me a support group should be there to support the needs of those attending.

Hi op. How old is your dd. I have a sonwho is 4 and asd if you'd like to chat. We can do it on here or pm me

What you're saying is really valid and I'd give that as feedback. It might just be for practical reasons - less younger children being diagnosed so less people who could potentially attend that group.

I've run groups and even though lots of people express interest, you invite enough people and many will confirm they'll attend, that doesn't always transpire when you put the group on. Last group we put on, invited 50 (as knew most wouldn't confirm), got 15 confirmations. Only ONE turned up and we were paying 3 members of staff to work out of hours (due to request for evening group for people who work 9-5) plus room hire.

Also my ds is non verbal still in nappies the list is endless.
He will also be attending Sen school when the time comes

I just hear a very interesting this my boss told me. basically some of the UKs largest employers are working on understanding and embracing autism (or variances thereof) with their workforce, and understanding the various facets so they as employers are more sensitive.

By the time your son is all grown up, it will be a lot easier OP in the world I think

so remember that, onwards and not surprised the group is hard

I attended these groups after both ds and dd's diagnoses. Tbh I would have loved to have known someone with an older child with autism when ds was diagnosed (twenty years ago now) because it felt very bleak. It was hard not knowing what might be possible. It was hard wondering whether he would ever speak (yes), be independent (no) modify some really challenging behaviours (yes).
When dd was diagnosed eight years later (both diagnosed before they were 2.5) I was very careful in the groups to let other parents see that whilst it might feel hopeless now these children will grow up and make progress even if it's not in line with their NT peers and whilst I didn't paper over the struggles I hope that I did give some hope and an insight into our lives after diagnosis.
I think it's a little unfair for you to surmise that parents of children diagnosed later have children with milder autism and fewer challenges to be honest. For me, having two children with autism who were diagnosed at two and aren't at the better end I can tell you that I know parents with children supposedly at the better end who go through hell each and every day where I have it pretty easy in comparison.
It would probably be easier if you had separate sessions such as pre school age and older but I don't imagine the funding allows for that. unfortunates

Do you have any professionals involved at all?
If you do, ask them of any other support groups. We have several charities (carers, autism, cp, family network, snap etc) and they all run different type things. It's worth tapping into now, whilst he is young
Or go and look on your cdc notice board, ours lists autism friendly hairdressers and stuff too, so it's quite useful.

Insanity

I think youve missed the point a bit.
The op isn't indulging in some kind of 'who has it worst' competition. She is frustrated at having to sit through a support group where the needs of the more able children are prioritised. It's no ones fault but that doesn't stop it being hard for her to endure so soon after diagnosis.

And to be honest your perception that your life is easier than the lives of peerswith more able children is neither here nor there. That absolutely will not be everyone's experience.

My son with autism is now 23. He was diagnosed at 2 and a half. He didn't speak til he was 4. Screamed all day - or slept. Etc etc.

If I'd been to a similar group when he was a similar age - yes, I'd have felt precisely as you do. It is insensitive - and not much help. Luckily the group he went to when newly diagnosed was of toddlers and reception aged kids. I can't imagine contending with that mixed age thing at such an early stage.

But - to reassure... He's now at uni, and doing really well despite leaving school with no GCSEs and couldn't read til he was 17. He was in special schools/units til age 11 when Blunkett kicked the special units into touch - so he was settled and happy and coping til he was 11.

"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"

My DS has a speech disorder, hand flapped, span...

I didn't see it because I didn't see it, lol, I don't still feel like that (he's an adult now) but for a very long time I did feel the need to justify why it had taken professionals to notice it.

I suspect that's why there's so much talk about how bright or gifted their DC were was all, as in, don't assume it's because their DC are in fact less affected (they may or may not be) but it might well be because they're feeling a bit fragile over not noticing when their child was younger.

Pag, thank for explaining

Joffrey, you don't know how happy that makes me to hear. Underneath I think dd is more able than she can express, there's a few little quirks- like she can if not watched sometimes lose herself in music and dance perfectly in tune with real expression, to the extent you can see a story of emotions being expressed in a ballet

It is not really about what difficulties each child and carer faces but attending a group where the needs are so varied that become irrelevant to the attendee no matter where the child falls on the spectrum. If the group had a large number of pre school - non verbal it would be useless to a parent tackling the stress of mainstream. I remember all the "he will talk soon enough" still hoping he is now 10.

I haven't got much patience for people who think those at the more able end of the spectrum have it harder. They have a different set of difficulties which are difficult but they are no way as bad as what you have to deal with at the severe end. I've heard it so many times and its incredibly self centered and insensitive.

We're going to an early bird course where the majority of DC are non-verbal. Our DS, however, is high functioning & one of our biggest problems aside from being hit/kicked every night when we try to put him to bed is getting him to stop talking to strangers constantly. Not every child diagnosed early will be at the severe end of the spectrum. The course they ran before this one had a majority of high-functioning DC.

Like you, though, we don't feel able to discuss our difficulties in what is supposed to be a support group because we don't relate to a lot of the other parents' struggles. Not sure what the solution is though - the trouble with ASD is that there's such a huge range that there'll always be someone in the room who can't relate to whatever's being discussed.

I'd definitely flag it up to whoever's in charge if you're not feeling supported. I think it's important for everyone in the ASD community to be conscious of the variety of difficulties faced by others & sensitivity & an all-inclusive attitude should be fostered, particularly at support groups that are many people's first introduction to other parents of DC with ASD. My friends who have DC on the spectrum have very different challenges to me but were among the only people to support me when most people were still insisting he's "fine". It is possible for us parents to recognise that we don't all have the same struggles but to support each other anyway. Perhaps your group just needs a bit of a reminder?

DS isn't the only member of our family who talks at strangers too much. I've mostly learnt to reserve my waffling for the internet... Sorry!

Generally the later the diagnosis the less severe on the ASD/Autism spectrum right? So those parents of 'more able' children might have lucked out with a high functioning ASD child. My sister's nephew is high functioning (diagnosed at 8 because a teacher with an ASD son spotted something concerning) but my neighbour's son isn't verbal (diagnosed at 2, global delays, violence, the works) & they're both the same age. My neighbour can't even look at my sister's nephew when he comes around without getting upset. It's not unreasonable for you to seek a group of like-ability children.

Astoria - high functioning doesn't relate to how severe the autism is, it means without an impairment to intelligence... but that doesn't mean they aren't impacted by the autism, IQ is only useful if you can use it.

Friend trawled around asd groups until she found parents with more severely affected asd, mainly global Dev del. They kind of formed their own meet ups.

There was also some great stay and play sessions at local children's centre for under 5's under going diagnosis

I so understand OP, we had this sooooo many times. Spent early bird bullshit course listening to other parents discussing their verbal children and looking at me with pity if I chipped in. Spent years listening to education staff justifying why he was being babysat rather than taught. I guess they would still be waiting for his language to come in if we hadn't decided enough was enough and constructed something useful for ourselves. However if you have a genuinely good special school nearby then find it and hang onto it!

I understand the wish to bring the diagnosis of ASD together and economies of scale bringing all parents together etc. But GUESS who loses out and ends up staying at home in tears as usual - those at the severest end.

Truth be told I ended up with just one or two friends with children as severe as my DS. I love them so much and nobody else really gets it.

My son is autistic, we have our difficulties.

But when I have attended several courses it's been nice to say my son was good at x or x. It was never a dig at other parents/
Guardians in the same boat as us.

A poster called Jimjams (is she still here?) I remember used to talk about "autisms" and I can relate to that. When my Dd was first flagged (non verbal at 3), there were two other children the same age we knew who were in the same round of SALT and assessments. In the 10 years the followed, their paths have diverged dramatically. Their parents and I still see each other every now and then, but our experiences, and those of our children, are vastly different, and we have no common experience any more. It is difficult in fact.

I very rarely use Autism anymore as it tells the person very little. I stick to severe learning difficulties as it is more informative and stops the what's his "gift" comment. Autism and its individual symptoms is difficult for everyone even those trying to be understanding.

I think part of the problem is this need to label, our DD is 'high functioning' it took 7 years to get help by which time at 12 she was suicidal self harming wished to die and had developed Misophonia so badly (related to autism) she has become isolated from the world by necessity

She can't even attend a special school and has to attend school from home

There is no treatment or cure and as a very bright and able young women she has total insight of her condition which is the hardest thing to bear

High functioning does not mean not severely impaired, just differently impaired

Over on the special needs board there are lots of us who will be there for you on good days and bad, some with classic autism others more like my DD

As is often said, when you've met one child with autism you've met one child with autism

I agree user1471537877, I have a similar situation, I had no idea about all this ill feeling, I thought that we were all supporting each other.
(Not aimed at you op, some of the later comments).

I thought that it was understood that higher IQ does not mean 'easier' behaviour.