Thread 13: autism and any other additional needs A/W ‘23

[openupmyeagereyes]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
https://www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
https://www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
https://www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
https://www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
https://www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
https://www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
https://www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
https://www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
https://www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
https://www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
https://www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
https://www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

Yes, sorry that’s what I meant. GDD seems to be a placeholder that gets replaced by a LD diagnosis if no other condition has been subsequently diagnosed. I have a friend whose ds had the same, albeit younger than your ds. She thinks he is autistic but he doesn’t yet have that diagnosis.

Sounds like the school should be a good fit then. Is it close to you?

Glad it was what you hoped for @dimples76 but can be difficult if taken off guard / unexpected.

there’s been a few messages on here lately with regard to LDs. DD’s diagnosis alludes to LDs although given early age I guess that’s a bit speculative. But to me it is kind of a logical extension of the various difficulties her autism presents. But I get the sense here that LDs is for some parents a real negative, is that accurate? I guess I’m missing what the extra implications would be on top of autism (maybe I’m coming at it from the more severe end of an autism diagnosis). Or is it because of schooling implications?

I also don’t know why there is such a separation between LDs and the rest of the neurodiverse community - as most of us with kids with significant delays there is overlap with LDs and it feels like there is a stigmatisation. My DS is severely autistic, I don’t really know another word that appropriately describes this. He would have gone in and out of possible LD diagnosis, currently not labelled as LD and I’ve had more than one person in forums and communities say that his severity of autism isn’t autism, it’s LD, maybe to say anything severe isn’t autism.

I really don’t know where this comes from but it makes me feel sad as there isn’t any clear line where one begins and the other stops. I’ve read that a definition is ‘harder for someone to learn, understand or do things’ which is probably many of our children, certainly mine. I don’t know why it is stigmatised.

Ahna from a parenting point of view I think it’s fundamentally a fear of the future. That with LD’s there’s a higher chance of not having a ‘successful’, and therefore happy, life. A fear that there won’t be the rites of passage like university/college and marriage. That it’s more likely they’ll need assisted living than being independent, they will be more vulnerable. That sort of thing.

ToastMarmalade I’ve seen people on SN threads say that behaviour is not autism, it’s LD’s. You see parents on the wider site say my kids are autistic and they would never behave like that (usually aggression). Completely ignoring the fact that many autistic dc do have LD’s and can have aggressive behaviour. It becomes irrelevant whether it’s one or the other or if the two are even separate. All that matters is, what support does the individual child need to become all that they are able to, whatever that is for them.

Yes, I would agree with Open, Ahna. I read something the other day, for example that only 5% of people with a learning disability are in paid employment. It did state that relates to adults with LD 'known to the LA' which I would guess doesn't include some of the people with mild learning disabilities ...Whereas I guess the stats for ASD/ADHD employment are rather different.

I am not sure how easy it is to distinguish between neuro-diversity and learning disability. I think DS's IQ is below 70 but then in addition to that ASD/ADHD traits create other challenges to learning because of lack of concentration, focus on his narrow interests etc.

I just met up with an adopter friend whose DS is doing so much better now they have him on ADHD meds and he is in a SEMH school. She reminded me that I might be able to get a Disability social worker for DS now - although her DS's behaviour has been horrific at times, he is very bright and his ASD and ADHD diagnoses were not enough to get him a SW, he needed an LD diagnosis, which he won't get.

Just received a summary of the OT assessment from Monday which makes rather depressing reading. Nothing new but I just think how hard life is for DS, eg 'DS found it exceptionally challenging to organise himself for activities. He displayed limited body awareness, very limited saving reactions and could not hold a static position for more than a few seconds". My poor little chick

Open the school I want is about 8 miles away, about 20 min drive. I feel like I am not going to sleep properly until February 15th - I am not good at waiting.

Oh bless him dimples. The point of the OT is to help though, personally I think it’s really beneficial.

I think employment stats for ASD are 20%, so worryingly low but I wonder how that will change with more homeworking.

Makes sense @ToastMarmalade @openupmyeagereyes @dimples76 - you describe what I kinda expected but personally I hadn’t thought of it so much before.

ah @dimples76 sounds like A tough read. And I know what you mean, sometimes I just catch myself thinking poor thing for her to have to have so much stress all the time (that’s when I’m not focused on being self pitying to myself…)

fingers crossed for you for February.

Sorry, me again! After almost 3 years on the waiting list I just got a call from CAMHS they are starting DS's assessment next week! I almost didn't answer the call as I was making tea and thought that the private number was trying to sell me something.

Is that for an autism assessment dimples? Great things are finally happening.

Yes, it is Open! What is less clear is whether it will also assess for ADHD and LD...guess I will see what next week brings

It would be helpful if they did ADHD at the same time, wouldn’t it.

Hi, we’ve had a tummy bug making its way round the house so haven’t had chance to respond for a while.

regarding EP assessments, ours was one commissioned by the school to get the EHCP and if it hadn’t been done in lockdown the EP said she would have definitely come to visit DD at home. Instead she asked us A LOT of questions and observed her in a zoom speech therepy session and then saw her in school once they opened up.

I definitely felt though that as parents we were included in the process and we got to talk a lot about how she presents at home. And I think this lead to some confusion. After talking to us the EP said it sounds like she has specific learning difficulties, rather than LD, but then when she went into school she was surprised at how “low functioning” she appeared I guess - and how bad she did on the tests!

I think my feelings around LD diagnosis has changed. I was quite scared of it as a concept at first, as it really means your child’s future is curtailed but obviously a lot of that is actually due to what they can “achieve” and what they actually want to do. I feel like my DD is capable of much more than she presents but she’s just not interested so she’s not going to have motivations to learn stuff that maybe I would have. Her way of thinking is just very different to mine, and that’s fine/great even! I feel like my internalised idea of what a low IQ/ LD means was totally wrong and very limited. I do still push against the idea of my DD having LD though for some reason, and at the same time I’m worried that if she doesn’t get that label she won’t get enough support as she grows into an adult. It’s hard being a parent!!

I did ask the EP even if she has GDD and they said no it’s not that, which to this day I’m confused about because she is delayed in several areas.

my DD has a very PDA profile too which hinders her learning even more. She likes to give wrong answers and digs her heels in (to put it mildly) when asked to do stuff

Bit of update on our EP situation. I voiced my concerns to the Head as discussed on here. She responded saying that they knew DS had ‘amazing capabilities’ but remained puzzled by the difference at school and home and didn’t want to miss anything. The EP they use is well known and respected to them, they want really her view on that and what adjustments they could maybe make for DS that they were currently missing. She said that was where she was coming from rather than a full assessment situation. Said she really thought there’s was the best setting for him and apologised for any confusion. So on that basis I said ok but asked for a conversation with the Ep first to have input.

interesting discussion re LDs. I tend to think of LDs as being IQ based whereas behaviours I tend to link more with ASD. LDs definitely having more negative connotations.

Theirs not there’s!

I think that sounds very positive Carrie. They seem to be taking your concerns seriously.

Ds had a good week last week but this morning was tricky and I ended up taking him home early. It always seems to be swings and roundabouts here, though overall he is doing better.

Ds has already written a very long Christmas list which he adds to regularly 😆

carrie all sounds positive, I hope it goes well.

@dimples76 good news that it’s moving forward! And @carriebradshawwithlessshoes that sounds better. Shame they had not explained better from the start to save you some stress though.
@Dorothyparker010 yes I recognise and relate to a lot of your observations there re LDs

wedding went ok this weekend. My mum was over for childcare so DDs only really did 2 hours which seemed to avoid big meltdown. DD1 played with fidget spinners in the ceremony and lay on the tiles etc, some babbling - apart from a few judgy looks it went ok.

eating seems to be getting worse though. We’ve had for a couple of months that she won’t use a spoon anymore - we have to feed her - but also now just way more picky w food. Dinner used to be pasta and peas but she has refused it for a week now and will only eat bread (only the crusts too). And breakfast of weetabix with a ton of nuts and seeds crammed in is also not going well anymore. I’m not sure how to start on offering her new stuff as she will just refuse everything. For dinner w were in a bad habit of screentime, she won’t eat without it - but it’s also getting harder to find anything she wants to watch so she gets very angry, we try about 20 different videos, then she will doesn’t it. It’s driving me mad and I know it’s so unhealthy too.. any tips?!

Ahna I feel your pain with the restricted eating, we’ve made barely any progress in years as ds will almost always just refuse to try anything.

I think all you can do is continue to offer her a new food at each meal, in a tiny portion on a separate plate. If you’re eating together then something you and/or dd2 are eating. Obviously, if she takes to something give her more. Always provide her with at least 1 safe food at every meal. There’s an OT ladder of acceptance thing for eating which you could Google.

Don't worry about whether a food is healthy or unhealthy, at this point you’re simply trying to expand her palate.

Food chaining is a good method but needs the child to be at least a little bit willing to try something different IMO.

I haven’t found any easy solutions I’m afraid, ds is very averse to the sight and smell of things that aren’t his safe foods.

Sorry Ahna, DS is ok with eating (unless unwell) so I’m not sure I can help much. Thoughts may be..

1. DS likes to eat with us, would this inspire her?
2. DS has always been a nightmare for picking off other peoples plates. Would she do this? I stop him but if it encouraged her to eat it would be a start..
3. what about eating in other environments? So if I’m watching tv eating say an apple DS will come over and try to have a bite. He may well not want the apple if he was given his own or presented with it at the table
4. i don’t think you can give up trying. I do think DS gets bored sometimes of food and there may be things she fancies that you haven’t tried yet.

I thought she was ok with eating, didn’t you say you were concerned about her 2 sandwiches at nursery etc?? Hopefully a phase that may pass.

glad the wedding was ok.

It seems ds had a better day today, thank goodness! 🙏

Thanks both! Yes will keep offering / trying. Bread is pretty safe still and indeed there was a phase I thought she was eating too much in volume but the variety has always been a problem and is now worse than ever. On the eating as a group, I don’t think for her but it does make me think maybe eating alone is better - usually both DDs are together at the table. I absolutely hate wasting food and mealtimes really trigger me atm; I can’t keep my cool!!

It’s funny you say that Ahna because my pet hate is food fussiness (in general life obv, not our kids). When I met DH his bloody mother who drives me mad anyway with her petulance would sit curling her nose up saying like a toddler ‘uuurgh… I don’t like… (and I’m not kidding here) cheese, mushrooms, fish, beef that is not cremated, any non English food, tomatoes, nuts blah blah blah.’ I was like FFS and had DD shelling prawns from the fish market at 2 🤣🤣. Said to DH I’m not having kids like your mother!! So glad this isn’t a challenge for us and yes, I hate waste too.