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

Definitely suggest it is split by age otherwise a lot of what you will be talking about would be completely irrelevant to a lot of the people there.

My son was diagnosed at 11, just a few months ago. While some autism parents post on the groups I'm in about the new achievements I can only post what the newest thing my son can't do, anxiety hit at the start of puberty and we've been on a backwards trajectory ever since, culminating in school refusal at transition to seniors. The whole Sen issue is a personal one, every child, every parent, every situation is different..and difficult in so many ways. While I applaud the child who speaks for the first time at 7, or potty trains at 10, I still feel sad that my son screams at the sight of a bee and couldn't care less he has no friends as he doesn't see the need to talk to strangers, including his Paediatrician which made diagnosis hard. I would never belittle the struggle of any Sen parent, and truly am in awe of some dealing with seeming huge difficulties, but it doesn't make my heart any less heavy.

From a commissioning point of view it's very hard to change the set up of the groups. Funding will only be available for a certain no per year and there is little chance they would agree to fund them during assessment.

But the professionals running the group should be experienced enough to be aware this is usually exactly what happens with the mixed ages and deal with this when they see it becoming difficult for other parents, it should be a balanced view points and although venting relief is part of a process they should be reminded of the fact that others are in the group in different situations.
I am not a professional but admin who ran the groups with therapists and this always came up on feedback and they tried to tackle it at each group. Please approach the group organiser and discuss it

As for who has it harder hf/lf it depends on the child. I've known very happy children with lf autism who don't display typically and I've known very miserable children with hf autism who have associated mh problems, severe sensory issues, severe awareness that they are different and that others are taking the piss out of them. It's not a competition.
Also quite a lot of severely affected youngsters end up as hf teens especially with early intervention so it's not either or and that's it.

It works both ways though - I went to a camhs run group and it was really awkward as one mum's ds went to an sld school and I think everyone felt guilty talking about the things they struggled with when her son was non verbal and much more severely autistic. I could identify with what she was saying as my son was non verbal for a long time and is still in nappies but we were in the minority of this group and I think we both made everyone else feel uncomfortable.

Anyway, I concluded that groups aren't my thing and I haven't done another. I paid for counselling so I could have a massive grieving session every two weeks without someone telling me that they think my child 'has something' and 'will probably become a computer genius' before jovially pointing out, 'what is normal anyway'. Aaaaaaaaaaaaaaaaagh. And breathe.

UserOO7

It's lovely that your daughter can express herself through dancing. That brought a tear to my eye.

I agree that there needs to be more focused groups. It is a very big spectrum.

Bumsex I don't see anyone saying it's a completion, I see parents saying that the shock they feel at a diagnosis age 2 can be quite different to the relief of getting a Dx for a teen/preteen.

It just can be very very different for everyone.

Of course and I did say groups should be split by age. There will still be vastly different experiences though. My ds was diagnosed at 3 and although he had slightly delayed speech he caught up quickly and he was toilet trained and attending a mainstream school. We were in a post diagnosis group with children who were completely pre-verbal and had very little non verbal communication and also other co-morbid conditions along with the asd.
Awareness is so much more nowdays among parents and professionals that early diagnosis doesn't necessarily mean severe autism. It is possible that if my child was born a decade earlier they would have been diagnosed as a teen or just written off as a difficult child and not diagnosed at all.

Absolutely, no one can say whether anyone has it easier. I felt incredibly upset to see that a couple of posters did say that it's easier to have hf on this thread.
It just proves that no one has a clue what others are going through.

To get back to the original dilemma, I completely understand that it's not useful or helpful to be in the group as it is, especially if it's making you feel even more isolated.

My dd tears patches of her hair out, the only place that I feel I could discuss this is online, maybe that's a better option?

I, as a parent, have an easier time than the mother of one of the other children I talked about. Undoubtedly. For her son and my daughter and their experience, it's not possible to compare. They are apples and oranges.

I also know of adult siblings both diagnosed young with autism. One is doing very well in a high paid career (related to their area of interest or obsession as some call it) and is living independently and has a husband and children. The other needs round the clock care. Their mum told me that when they were young it was the sibling who had the most severe symptoms and spoke later who is now living independently.

I think the thing with a post-diagnosis course is it normally has topics that will be of big interest e.g. communication. Of course the recently dx, older DC will still have communication difficulties, but that is a different kettle of fish to a newly dx preschooler. And yes there were a range of non-verbal to very verbal in the group I went to, but the course was run to take account of that. They pretty much followed the Hanen More than Words that has the 4 stages of communication - so there was plenty of useful information for everyone.

But for the OP, if the majority are parents of children recently dx ages 8+, a topic like communication is going to get swayed into a very different direction than her child's difficulties.

I don't think you're being unreasonable at all. It's 8 or 9 years since my son's diagnosis with Asperger's and until I read this thread I'd forgotten I'd gone along to a group for a few sessions.

It's not even the age difference, I think, or the severity overall, but the relief of being able to connect with people whose children has at least some of the same behaviours as your own child. In the group I attended, there were a couple of young women whose younger brother was very like my son, who was a spinner, flapper, runner and shouter. They only came to one session, and they were the ones I connected with because the other children being discussed had more social communication difficulties, which are challenging yes, but oh, the relief of finding people who knew what it was to be with a child whose behaviours were so unmistakably, in your face, off the wall.

I think it would be well worth your while, and as you say for the benefit of those who come after you, to speak to the people who organise the groups to see if they can be organised more in terms of similarities of how the children actually are and the particular challenges the parents are facing.

My younger brother has autism and severe learning disabilities and I can remember how isolating it was. His was in the early nineties too when autism was a lot less known in the general population.
Even at eight my mother would have still had the how do I stop him biting, scratching and licking issue.
He didn't really talk until he was eight and it was really isolating even as a sibling.
In later years my mother had other parents with newly diagnosed children phoning her. Is there still this available through the national autistic society?

My brother, now 30, is effectively still a very big five or four year old.

"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?"

Not necessarily. DS2 was diax at 3 and at 5 had the [uneven] language skills of a 2 year old, but had a spurt in cognition and language around 7-8, eventually got degree and is now at 26 preparing to leave home and set up on his own.
The difficult thing is you cannot always predict what will happen - the uneven development characteristic of ASCs plus variations in personality, education and mental health can give very different real world outcomes for kids who at the same, early age seemed quite similar.

This has and probably always will be the problem with an umbrella diagnosis. My friends son has a brain injury and is classed severely disabled, DS2 has very similar needs but using Autism and Severe together feels like playing trumps so I have just dropped Autism as I would never want someone to feel I didn't feel their child/ themselves did not have severe problems as well. The same with LF/HF during the early years it is dangerous to predict so I avoid the terms. There does seem to be jump in language for some at 4 and 7. Autism groups are difficult even the SN boards can be difficult to have input that is relevant.

Placemarking, YANBU op -coming back later!

The difficult thing is you cannot always predict what will happen - the uneven development characteristic of ASCs plus variations in personality, education and mental health can give very different real world outcomes for kids who at the same, early age seemed quite similar

This in spades.

It can be difficult to predict the progress of a child with ASD, that's why they merged a number of ASC into one diagnosis of ASD. When your child is diagnosed you aren't given a prognosis, even if you ask, because no one can really tell you. Children who are non verbal at 3 may go on to be independent, successful even. Children who are chatty and precocious at 3 may not.

If your child has associated LD then I think that makes a difference, but that would be a dual diagnosis, LD are not part of the diagnostic criteria for autism.

I usually say my son has severe autism and severe learning difficulties. He doesn't have an SLD diagnosis because you often don't get one if you already have an asd diagnosis.
In real life it is obvious at his age from his lack of understanding that he has SLD. With people who don't know him I find it can be difficult for people to understand that he doesn't understand. Like his wandering into the road or trying to stick his hand into a flame isn't only about being impulsive or not thinking but about him really not understanding why he shouldn't do it.
I do find it annoying when people with children with ASD but not SLD say 'they all have to learn' and give 'advice' when they have no experience of parenting a similar child. Most people don't do it but there are some that are keen on doing it and it is disrespectful.

It is fantastic that LA's run these groups. In my LA they are free for parents/carers but outside bodies/organizations charge £100 per session. In our one they are split into teen and pre-teen, so there is a wide spectrum (pardon the pun) I find the information bit very empowering and informative, but I find the same parents seem to keep dominating the Q & A session, not in a "this is all new to me I want to know xyz" which would be understandable, but almost an attention seeking exercise where they get the limelight and are really enjoying it. There is one in particular who keeps interrupting the "expert" to add her opinion too or correct her

I agree with the pp who said about organizations and statutory bodies becoming more informed about ASD's so I do think things will vastly improve for our children.

Op as someone with no experience or understand of autism, I would just like to say that I can understand your point 100%. I'm not sure of the solution, just wanted to make sure you know you are not being over sensitive, they are being insensitive xx

I think it is difficult. We used one of these sorts of groups in the past. Our DS has a high IQ, etc., so highly functioning in that sense, but that doesn't mean he doesn't face big difficulties in many areas.

We took him to one of these groups and there were kids who had much more severe difficulties and much of what was going on with them had no relevance to us. We wanted to talk about coping with bullying, or organisational skills, or whatever, but it was difficult when there's such a wide spectrum. Some of what we did felt like a waste of time because it wasn't relevant to our DS.

Also there is no 'Aspergers' diagnosis (at least there wasn't for us), so you didn't have a diagnostic distinction between children who are non-verbal etc. and the 'maths genius' type child. But it doesn't mean the latter does not need or deserve support.

Hi OP yes agree entirely, from the POV of a parent of 8 yr old DD who has been very recently diagnosed. Even if behaviour were the same in the case of an autistic preschooler and teenager for EG the preoccupations would be different. EG in my DD's case I have to take into account puberty and friendship issues with regards to her self care, while the preschooler parent would naturally be more focused on pottytraining etc.

It's why I stopped going to autism support groups OP. My son is an adult, non-verbal, has epilepsy, requires 24 hour 2:1 and his care plan includes risk assessments to the general public. He's also very aware of his autism which causes huge problems but there is no-one with the skills to work through that with him.

The support groups tended to be full of HFA and their issues were not our issues.

It's why I bang on about autisms - I don't believe my son even has the same condition as someone with HFA/AS. He has no chance of an independent life, no chance of a relationship. I have lost count of the number of times I have been told he/we has/have it easier than someone with HFA. I'd happily swap to be honest. (And I think they're delusional although I usually don't reply to that).

I've also been told we get handed services on a plate. Bollocks. We have fought for everything - just like everyone else. And if my son hadn't had one of the best SW's in the UK (I swear she is) he'd currently be in a secure unit hundreds of miles away.