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

Mummytodo sorry, my ds didn’t do the ADOS. You can probably find the scoring online though?

Grouchy that’s frustrating, has she seen a SALT? Not sure I understand your comment about knowing better how to deal with meltdowns? You don’t need a diagnosis to respond to them as autistic meltdowns surely?

Elizabeth hope you had a good day in town.

dearfoxruby if she’s arty then maybe art therapy would help? Wrt resources, there’s so many, really it depends on the issues. Have you read how to avoid anxiety in autistic children by Luke Beardon?

carrie hope ds is better now. How are the meds going?

openupmyeagereyes Sorry, I meant support and advice really when it comes to her meltdowns. I know I can look things up, but I've never found anything that has worked with regards to these specific events. OT hasn't been helpful in that regard either, possibly because they're so sporadic now (we had them weekly when we moved house). I was hoping that we might find more specific support with a diagnosis, I think. I can see when she's getting to a point where it might escalate to one of these events, but by then I'm already too late to head them off. They don't always happen.

We've had no need for SALT or directed help over the years. The signs/behaviours have increased slowly as DD has got older, which isn't unusual for autistic girls. The only sign when she was little was that she was given to being anxious. She was an early talker, is good at learning/educational work (apart from word questions in maths), doesn't have additional needs. She struggles with social interactions, with emotional regulation, with change, and with following instructions. She also has a lot of difficulty focusing and concentrating, so the OT suspects ADHD as well.

That Luke Beardon book sounds good, I'll have a look at that too.

She struggles with social interactions, with emotional regulation, with change, and with following instructions. She also has a lot of difficulty focusing and concentrating salt can be useful for these things too, it’s not just about speech.

An assessment and diagnosis won’t give you strategies on how to help avoid or deescalate meltdowns for her. You really just have to read up on strategies and then it’s trial and error to see what works for your individual child. Mostly it’s about changing your own mindset and endless patience.

Naomi Fisher has just released a book called a different way to learn: neurodiversity and self-directed education. I’ve bought this but not read it yet.

Books I like are:

• ten days to a less defiant child - Jeffrey Bernstein
• differently wired - Deborah Reber
• the co-regulation handbook and the declarative language handbook - Linda Murphy

Thanks, that's all really helpful to know. I didn't realise that about SALTs. I think being home educators means that we're very much off the radar when it comes to this sort of thing, and it's literally impossible to get through to the GP to make an appointment to talk about referral, which is why we found a private OT to get some understanding.

I should have realised that there wouldn't really be any guidance after a diagnosis given that when I received my (physical) condition's diagnosis the consultant said "You have this, here's a brochure, goodbye".

DH and his brother are both autistic (DH Asperger's), but present very differently to DD.

GrouchyKiwi I think that’s often the case. That’s not to say there aren’t benefits to assessment and diagnosis. In our case, the help we got was mostly via the early help team, not the paed - specialist teacher run playgroups (before ds started school), a parenting course for children with social communication difficulties etc. but these were all focussed on younger children than your dd, and often a focus on school readiness which is not relevant to HE. That said, I think the NAS runs a parenting course for older children.

Honestly, they tend to have standard toolboxes: visual timetable, social stories, movement breaks etc. all of this you can find out online yourself in probably greater detail.

Oh, and another book that might be helpful for anyone reading who’s in a really bad place with meltdowns and aggression is calm the chaos by Dayna Abraham. Yvonne Newbold has lots of help too for VCB. Low demand parenting too.

I have just started the Luke Beardon book and a lot of what he's saying about anxiety resonates in DD's behaviour. It's SO GOOD to have an idea of where to start to address things, so thank you so much openupmyeagereyes.

One of the things it has shown me is that the ambiguity of language is a real issue for DD, so I can work on making sure I keep meaning singular as much as possible. I'll also tell her it's OK to ask if she's not sure which meaning is correct.

Been away for a city break this weekend which was lovely! First positive thing I can say about DS for a while! Hes been so poorly with the stomach/ parasite thing it was nice to see him enjoying himself.

Open we are going to try the meds tomorrow. I’m not looking forward to it, he’s so sensitive to stuff. I’ll let you know.

Am glad you had a lovely break carrie!

Grouchy glad you’re finding the book useful.

carrie glad ds is better.

Sleep v up and down here with some super early mornings and some later. Back to school today. Good luck everyone!

Hope today goes well, for those whose kids are back to school

Hello everyone. I'm joining the thread as my son has just been diagnosed with autism. If I have the mental energy, I will read back to try and get to know some of you and read the advice and recommendations you've shared. In the meantime I'm going to introduce myself and ask a question - hope that's not bad form! and sorry if it's been covered earlier in the thread.

My question is: does anyone have recommendations for concise and helpful resources - TV programmes, podcasts, accessible books - to share with family members? Some of my family already know a lot about autism, and they "get" my son, but other family doesn't and they are keen to learn. I've read a lot of books myself and plan to read more but don't want to throw a library at them - would prefer to focus on a few recommendations to help them understand.

A bit about my son: he is nearly 7, in Y2 at school, also being assessed for ADHD next week (and I'm expecting him to be diagnosed with that too). He is very bright and masks in school so they have said all along that he's "fine" but they have implemented some support at our request.

I also have a DH and a younger child (who's 3.5 and neurotypical as far as I can tell).

I'm feeling relieved to have the diagnosis, although it's still sinking in, and simultaneously exhausted and mind buzzing with next steps. Am hoping we might be able to access a parenting course and MH support (for son) that is tailored to neurodiversity rather than the unhelpful NT stuff we have been offered up to now.

Hope everyone is OK. We had lots of fun celebrating the leap year (DS is obsessed!) And now its March, but still raining! Hope everyone has a good weekend.
@NameChange30 I've just been reading Untypical by Pete Wharby, highly recommend.

Hi everyone haven’t checked in for a bit - and a few new names I think so hi to everyone new.

no massive news for us. Had a bit of a testing weekend , everything just felt a bit tough. More and more we see DD2 trying harder and harder to engage play With DD1 (also aside from toys which I think she has figured don’t really get a response, but things like trampoline which in theory DD1 loves). Over Xmas I thought it was going in the right direction with the two of them but DD1 seems less keen than ever.

separately she’s putting everything in her mouth again - we have had phases before. Inc her hair and clothes which get skanky so quickly. I’ve looked for chewable necklaces before but never found anything great - any tips?

she bit one of the women at school last week too, this time when she was angry not wanting to do something -
normaliy it’s seems to be more sensory and not linked to being cross, so i was a bit concerned by this. The lady took it well.

she has discovered how to forward and back roll tho, which is very sweet and she seems to enjoy doing to regulate herself before bed.

sleep hasn’t been terrible, a couple of bad night meltdowns and some phases of hysterical laughing for hours

had a pre appt about the EEG, they were a bit concerned after meeting her that she won’t tolerate it on her head (it’s glued on electrodes rather than bathcap style, so tricky to practice at home). We will go in about a month and see what happens.

that ended up being quite long! Hope everyone has a good week. feels kinda like spring here!! The first tulips out. Best time to live in NL!

@Ahna65 thats a bit defeatist re the eeg (of them). DSs were glued on electrodes then a hat over the top, well it was like a ridiculously tight bandage hat thing. Honestly it was v hard to get off but the nurses said look, if he pulls it off he pulls it off, it’s our job to put it back on a million times over if needs be. He needs the eeg so there’s no alternative. I know some kids will struggle more than others but if it needs doing??…..

I sympathise with the chewing and the biting, we have had lots of both. He is now a lot better but at your DDs age he was terrible. Personally the chew buddy things for us haven’t worked especially we used to just try and distract him out of it. Also if he was chewing something not wholly terrible let him crack on (he has a hard plastic dinosaur and i would let him chew that.) Would she chomp ice? Tough chewy sweets? I’m typing eating spearmint chews which DS likes, they are complete filling pullers out but hey ho.

we are all good, finally. DS on day 8 of the new meds and tolerating them well tho titrating up v slowly. School are back to giving some positive comments so we will see.

hello to everyone else!!

In fact he seems improved in a lot of respects since we started the meds but of course it’s hard to know if that’s just the placebo effect isn’t it!

That’s interesting you can spot things already @carriebradshawwithlessshoes . are you keeping a diary? Imagine that could help with any placebo effect. Fingers crossed !

yeah I was of the same thinking that they would bandage it on. They said they wouldn’t want to cause distress but I think after initial stress she would settle. And the data is really needed I feel so it’s a bit of a weighing it up!

will look into chewy sweet options. Not sure DD would go near as so picky w food and then makes things a choking hazard bc if she’s not sure she will just let it sit in her mouth! But indeed some sort of replacement must be the answer. In the meantime I’m trying not to be bothered about the fact her jumpers are too chewed to be handed down to DD2!

That sounds promising Carrie.

Ahna DS can go though about 5 tops a day when we're home as he chews them but when he stops doesn't like the wet fabric against his skin. I have bought so many chewy things over the years but none have been successful. DS does like crunching ice though. My main strategy is increasing proprioceptive input but it is unclear whether that really helps. DS really enjoyed using a z-vibe at OT so I bought him one. He seemed to enjoy it at home too but we have misplaced it.

Does anyone have a child with extreme demand avoidance / pervasive desire for autonomy / PDA? I came across "At Peace Parents" and watched the free "clarity masterclass" which made so much more sense than anything I've come across before. Would be interested in others' thoughts on her take if you've seen it.

@ElizabethBennetsBoots
Thank you for the book recommendation - will borrow it from the library.

@Ahna65
You live in the Netherlands?! Amazing! What a wonderful country. I'm jealous of the tulips and the safe cycle lanes
Hope your DD's EEG works out 🤞

@carriebradshawwithlessshoes
Great that the meds seem to be helping your DS - which meds are they?

My DS needs an eye test with eye drops I took him for his first eye test recently (had never taken him and realised I really should), was expecting his eyesight to be fine but the optician said he's long-sighted and we need a follow up appointment to complete the test and ensure they get the prescription right, which means putting drops in. Am dreading it but it has to be done at some point.

@NameChange30 yes and I would recommend the PDA Society, so many lightbulb moments for me and DS when reading that, and lots of PDA friendly strategies.

The PDA Society website was where it all started for me. My lightbulb moment. DS was 4.5 and we'd had a really, really difficult day when he just ignored or rebelled against everything. I Googled "demand avoidance" and found the PDA Society. Read through it and it all made sense. I'd already been using a lot of the strategies by instinct or trial and error. We've been using them ever since, as much as we can - not always easy and it's taken a long time for DH to get fully on board.

The diagnosic report we've just received doesn't even mention demand avoidance, though.

I found Casey Ehrlich (At Peace Parents) really interesting in terms of the way she explained the reasons behind the behaviour. She described it as a "nervous system disability" which makes a lot of sense.

I think it is a need to feel in control that is rooted in anxiety, much of the anxiety coming from not being able to predict or generalise the future if it deviates from set patterns / scripts. I recognise a lot of those traits in myself too except my need to please people is often in conflict with my need to be authentic, resulting in internal anxiety getting higher! So I'm trying to unpick it all and be more my authentic self, but it's hard.
There are some good Facebook groups about and I think just chatting about pda helps. We managed to get demand avoidance written in DS' ehcp but no explicit pda diagnosis.

@NameChange30 we had the eye drops fiasco too although this last time the optician rang and said the putting in at home was just a covid thing and they would do it there next time. I’m thinking well you crack on then…! He is short sighted but then so are me and DH, both very much so so I wasn’t really surprised.

i hope no one takes this the wrong way but sometimes I think if it is genuinely needed (eye sight, eeg) and there is no other way beyond physically holding them still to do it then needs must. DS is strong but only 3.7 stones so in effect any adult (or 2 adults) can get something done if needs be. No one wants to do it but if my child needs meds for a misfiring epileptic brain then I’ll do what I need to do to get him there.

just to be clear @Ahna65 i am not at all sure if his new meds are the reason for his good spirits atm. He’s been through a period of being v unwell and I suspect he’s just feeling better. I think I’ve said before, generally, he often does go through calm and settled periods then the opposite for no obvious reason. We will see though..

@NameChange30 i don’t know your child of course but we got the drops in with DS on his back, me holding his head between my knees with the drops in my hand and DH ensuring he didn’t kick/ grab my hand. It only took a couple of seconds.