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

But in relation to the OP - yes it is insensitive and I have been saying for years that courses need to be organised according to functioning or it's unfair on the smaller groups - the needs are too different.

Just wanted to offer PM chats too :) I have 4 dc, 3 of whom are on the spectrum varying from 12yrs ASD but attends mainstream, a very delayed 4.5hr old, and a recently diagnosed but still under query for extra diagnosis 3.5yr old dd whose behaviour brings me to my knees most days

Oh and I am jimjams (still banging on autisms as you see)

Jimjams!

How are you?
I didn't know you were still on here. I remain incredibly grateful to you for your wise advice and general good sense over the past (xxxx) years.
Hope all is well with you x

We've been to hell and back Pagwatch. Didn't quite get the future we wanted for ds1 but he has the best life he could have at the moment. It was very hairy for a long time.

How are you?

I can guarantee that when I say DS2 has severe learning difficulties to other parents of children with SN they do not want to compare care packages, if however I mention Autism then it does become a comparison and I have been told how lucky I am. The biggest difference is if your older child/ adult has the cognitive age of a toddler then they are all severely disabled whereas others with a diagnosis of ASD may or may not have severe disability. My life is so much easier now I no longer mention Autism, much more understanding and much easier which in someways is a shame for future parents with DC like mine as I know I am not the only parent to avoid the Autism support groups.

Oh boulshired - snap - and I went the same way and started looking for LD support. I also tend to find something that says it is suitable for LD's is accessible to ds1 whereas something advertised as being for autism is usually not accessible.

Jimjams I have read your posts for years with interest as we have similar children I feel. Op I totally understand where you are coming from and remember vividly how the group I attended made me feel worse. Videoing a child being made to engage with a toy attacking me whilst the other parents had lovely videos of their children doing actions with nursery rhymes nearly sent me over the edge.

Hi cansu. and oh god your post made me shudder! I think often people running the groups don't realise how heartbreaking it is to be the one with the child who is much worse & how having it highlighted can make you feel utterly wretched.

Over the years I have come to realise that many so called autism professionals are actually pretty clueless and really only have a theotetical or kind of general textbook understanding of autism. I have also lost count of hearing about the old literal lang stories or how it is good to have an autistic child because they cant lie etc etc. Faced with someone like my ds they eventually pack up their symbols and bubbles and retreat!

Ha ha

Oh yes. Fortunately ds1 has scared off most of the utterly useless ones now. The others are too scared to be in the same room as him

Difficulties need to have been present from before age 3 for any diagnosis of asd to be made. So there wouldn't be anyone at an asd group who's child only started having problems at teen/preteen age. I can see how it would be difficult if you have a child who has severe needs to have to hear about what seem like minor problems to you but equally it is hard for parents to hear that they have it easy because their child can speak for eg regardless of what other major difficulties they may have. Maybe it would be better to have drop ins to discuss different difficulties - pecs, speech, sensory, motor skills, friendships, organisation etc. Then there would be less chance of having to sit through irrelevant stuff and more chance of meeting with parents/kids who are struggling with similar things.

But the OP isn't talking about a drop-in session, it's a course for parents of children with newly diagnosed ASD. No one is disputing the older children who have recently been dx have always had ASD, but their difficulties are likely going to be very different to that of a non/limited verbal/communication preschooler, and trying to cater the course for all attendees isn't going to work when the majority fall into one group.

There may of course be times when an older child has say GDD and is later dx with ASD, but that doesn't sound that that is the case in the OP's group.

I do agree OP. I experienced this in reverse - I was offered a parent's support group programme when DS was diagnosed with HFA and I immediately asked whether it was a mixed-severity group. Because how could I possibly say "DS keeps shouting out all the answers in class and we can't make him understand about taking turns even though the teacher has asked a question and he knows the answer - how can we help him negotiate this social minefield?" in front of parents of very severely disabled children who may never have verbal communication? Surely you'd have to be incredibly insensitive to ask that kind of question? And in that case the group would lose much of its value for me because I wouldn't be able to talk about questions which are a significant issue for me although much lesser than the things other parents are struggling with.

I was reassured that my LA did split parent support groups by type of autism, and I was in an HFA parents' group who had enough experiences in common for it to be worthwhile and I didn't feel that I had to censor ourselves out of common decency as I would have in a more mixed group.

DS2 has a bedroom/living room downstairs which is where I take professional connected with his care. I have enlarged and framed a section of his first ed physc report as a reminder to them of the shit they sometimes talk. It states that "the parents of XXXX are not allowing the independence that he is capable of and deserves and what is the worst that could happen." He has 1:1 inside special school and 2:1 outside and the whole house has fob and digital door pads.

I have never told anyone they have it easy. Parents of HFA kids -have told me (more than once) that severe autism is easier though.

And yes ds - I think it is hard if you feel you can't ask your questions. Unless a group is very large so there are separate groups that can form within it separation of some sort works much better. The needs are just too different to be combined together.

silence and isolation, feeling awkward talking about issues regarding mainstream versus talking about nappies and smearing. Both important to the parent but totally irrelevant to each other so we both sit quietly getting absolutely nothing.

Unfortunately despite the severity of his ASD ds1 is very aware of his disability & has spent his life heartbroken he cannot talk. I have had the same said to me bouls and it's just not true. Ds1 has also had periods of depression.

Oh sorry Dixie I mean (agree with your post as well bouls)

Dixie - ime SALT is hard to access until you have some communication or understanding

I am actually retraining as an SLT & would love to change that. We struggled so much to access SLT when ds1 really needed it.