Primary School Auties 10: Summer and beyond 2022

[LightTripper]

Thread 10.

Ooops, sorry, filled up the last thread without noticing - here we are at THREAD 10!! (How did that happen?)

This is a thread for the parents & carers of children with additional needs. Most of us have autistic/ADHD children in primary school, but anybody is welcome to join us to chat x

Links to previous threads below.

Thread 1
www.mumsnet.com/Talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed
Thread 2
www.mumsnet.com/Talk/special_needs/3451020-Reception-auties-2018-19-thread-2
Thread 3
www.mumsnet.com/Talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3
Thread 4
www.mumsnet.com/Talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4
Thread 5
www.mumsnet.com/Talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?pg=1
Thread 6
www.mumsnet.com/Talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6?pg=1
Thread 7
www.mumsnet.com/Talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7
Thread 8
www.mumsnet.com/Talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8
Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

@NameChange30 Yes, it does seem unusual. We get told it's because we've managed home environment around him. Which is true enough, but there

Aargh mumsnet ate the rest of my post.

We're not doing anything exceptional. And he's not being bullied, behaves ok with other adults 121 or (increasingly) in small groups (so it's not mummy as anchor), doesn't struggle with learning (the opposite - he's textbook 2E), is quite socially aware and hates being told off. It's a puzzle.

@NameChange30 on the filming thing, would a voice recording get the message across too, and possibly in a less intrusive/upsetting way too? I think if there was a recording of me having a meltdown as a child "out there" somewhere I'd feel much more comfortable if it was voice only than image (I mean, the chances of it floating around for years or falling into the wrong hands must actually be small, but a voice recording is really not identifying at all once the child is an adult and has an adult voice, so it might just give an extra layer of comfort - and it might still give the school a more visceral idea of the struggles that DS is facing without having to point a camera at him when he's overwhelmed already?) It's a shame it's even necessary but we all know sometimes a visual/auditory aid can get attention where a mere "parent's opinion" is ignored...

@UnoQueenie thinking about unmasking (something I am still trying to wrap my head around: do I even know what an unmasked me would look like? I am stimming more than I used to, and setting better boundaries, but that is as far as I have got...), have you come across the "Autistic at 40" podcast (mobile.twitter.com/Autistic_at_40)? She had an amazing episode recently about unmasking and autistic joy that just astonished me - I've never heard somebody talk so clearly before about what this could actually look like. I need to listen to it again, but anyway I thought you might like it. I've also started listening to the "Square Peg" podcast which seems quite good so far (and has LOADS of episodes), and I really like the Sara Gibbs one and the "Neurodivergent Moments" one too (while I'm on a "recommending podcasts" roll!)

Ooh thanks @LightTripper I'll check them out.
Sendist used case law recently to cement the idea if the symptoms of stress are directly effecting your child, the LA must reconsider section I of ehcp if appropriate. It's B v Vale of Glamorgan 2001 elr 529 and MW v Halton bc 2010 ukut 34 aac number 37. It includes eotas apparently so worth noting.

Audio recording sounds like a good compromise Light. By the way with my nephew we only showed the recording- playing on my sister's phone to the Tribunal judge and SENCO so there is no risk of that turning up elsewhere.

Advice re work needed. My head of dept has sent around an email re a colleague (with colleague's agreement) about his autism. One sentence in the email re stood out:

..with those at the 'high functioning' end of the spectrum ...

I wonder if any of you have any websites that you would recommend about the language used around autism. I think given that I work at a university that it is particularly important that my colleagues have a better understanding of autism (I wasn't planning on sending it to everyone, just the sender and diversity lead). Maybe I should leave it alone

I seem to be afflicted by other parents trying to help at the moment but actually making things worse. We had a challenging walk to school in the rain with DS slipping and tripping a lot each time screaming at me afterwards and saying I made him slip. As we approached school he fell down as we walked over wet leaves. As I was trying to get him up on his feet with him screaming and blaming ne a Dad (who I don't know) stopped and told him off as you can imagine this wasn't exactly helpful

I think schools can be very difficult places for many children, although DD is NT she struggled for YEARS. Ironically I would have said we gave her the best start, a stable home, no major worries that she was aware of (as to money or otherwise), the only child in both families. She wasn’t brought up spoilt but she never had to shout over anyone, never had to compete for anything. A big fish in small pond and a lovely little girl when she started school at 4.

then along came school with 30 noisy, boisterous kids, many just a lot ‘harder’ than her, whether that was personality or home life/ experiences or a combination. I think she just froze on her first day and didn’t really start remotely showing her true self until a good 3 years later. Staff used to say they didn’t even know she could speak for the first year. Total rabbit in the headlights.

when I think about DS with far less tools in his bank than her emotionally, socially and communication wise (even though intellectually he is just as good) it really surprises not one bit that we are where we are with school. It’s tough.

We crossed Dimples!!! Omg would you ever comment on another child????! What did you do?

cant help on the other point (work) but am sure others can other than to echo Uno that ‘low functioning’ is an awful and unhelpful term. Despite DSs challenges and social/ emotional immaturity I’d never call him that.

dimples I’d probably send it to the diversity lead and reference the email. The sender may have got their wording from them.

@UnoQueenie school have applied for additional funding (can't remember what it's called) for a 1-2-1 with a view to getting an EHCP once they have more evidence (not sure how much more they need but our LA are awful!) I'm hoping the one to one will work as otherwise I don't know where to go next.

Hello, I'm new here glad to have found this thread.

I just wondered how your kids are doing socially?

DS was diagnosed earlier this year with moderate support needs. Despite getting all the referrals we are still on waiting lists for speech therapy, OT and physio.

DS is 4 and started reception in September. All seems to be going well so far in terms of learning - DS loves the structured parts of the day.

But I sense he is struggling socially - not that he's said this to me, his communication is still behind his peers, he can be repetitive and use scripts, and I suspect this is barrier to making friends.

He is also going through a phase of being quite bossy and instilling rules on people, or if anyone even slightly brushes past him, saying "you hurt me".

Anyway I'm just not sure how to support him. We have bought a book about feelings and another one about friends, which he really enjoys going through.

Sorry for the long post. I just wondered if anyone had any strategies on that front. Have tried play dates with mixed success - DS seems to meltdown when it come to sharing toys at home, and it takes forever to calm him down.

It is tricky @hiketocake. We did find books on friendships quite helpful - and particularly books on feelings. I'll try to take a picture of the ones we've got later in case you want to know more about any of them. I remember really liking the Molly Potter ones: I don't know if that's what you've already got?

At Reception DD did have a support worker (a nanny with SEN experience) come in once a week to help her over a lunchtime or playtime with interactions (basically doing what they called "scaffolding" - so just encouraging her to interact, showing her that interactions could be fun/rewarding, steering things a bit if they started to go off-piste). It seemed to be helpful though of course we'll never know if things would have been any different without that intervention!

We used to sometimes do short playdates at playgrounds/parks too and that seemed to often work better/be less intense than a play date at home. Could that be worth a try?

She still socialises less than her peers I think but she's happy and it suits her. She seems to get on with them perfectly well in class, but in breaks I think she either plays ball games or reads her book, rather than chatting or playing more social-type games or whatever other 8yo girls might be doing... I think she needs that though - she gets enough social time in class in a more structured way that suits her better than breaks (which, after all, are supposed to be a break and not more work for them!)

@dimples76 on language and "high functioning" etc. I think this is the single best/easiest to access source I've found on why it's problematic and more generally why the "spectrum" isn't a line, and "spiky profile" stuff:

the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

If you think they are up for more detail I also really love this essay by mykola from Twitter, which he wrote after talking to a journalist who had written a slightly tone-deaf article on autism and was keen to learn more/do better.

coda.io/@mykola-bilokonsky/public-neurodiversity-support-center/how-to-talk-about-autism-respectfully-84

He has a section on "severe" autism part way down which covers this topic (but also the importance of person-first language, etc.)

He writes so well I think, and also added a little section on monotropism to the essay when I suggested it after reading (and loving!) an earlier draft so I feel smugly like I have contributed a tiny wafer of goodness to it :)

The whole site where it is hosted is amazing if they have time for a deeper dive. The Neuroclastic site is also excellent if you think they have the appetite to go deeper.

The other thing you could point them to is the latest Chris Bonnello survey, which he writes up on his website here (which does person-first vs identity-first language, but not sure it has anything on functioning labels):

autisticnotweird.com/autismsurvey/

Thank you very much Light

Feeling down today. We approached a private autism specialist team on the advice of the school, filled out tons of paperwork and received a rejection for assessment back from them due to lack of evidence from the school. Despite the fact that the school said they agreed an autism assessment was appropriate.

Every day is a battle in so many ways, my older daughter is suffering too because of how her sister treats her, and now I have no idea what else we can do. Everything has been thrown into doubt again and I am questioning myself for the millionth - but if DD2 isn't autistic, why is she struggling so much and how on earth are we supposed to help her?

I hear so many people say a diagnosis isn't important - but if she isn't getting any support anyway, what do we do next? Just carry on plodding along in our own little bubble and making it up as we go?

Cathster that’s really disappointing. Have you looked at the checklists for girls that you can find online? Similarly, have you looked at ADHD checklists? There’s a book called the highly sensitive child also the out of sync child that might have useful strategies that aren’t ASD per se. What sort of things have you tried to put in place already?

@openupmyeagereyes we’ve looked at checklists for her age and she checks pretty much all the boxes but not seen any specifically for girls. I haven’t looked at ADHD ones at all though so will check those out. The feedback we got for refusal was her social communication difficulties might be due to the impact of Covid, but she did not mention the impact of Covid would cause any of the other things we face such as the extreme anxieties, sensory issues, meltdowns, issues with disruption to routine, school refusal, not to mention the fact she is always stimming.

I’ll check out that book, thank you for the recommendation.

We’ve had limited success with strategies - I think naturally we prepare her in advance for changes to routine and she copes okay during the change usually but melts down afterwards. Visuals don’t work at all, timers she seems to manage better with.

That is odd isn’t it, especially when people manage to get private assessments when dc mask and school ‘see nothing’. Can you try another private assessment team?

There are definitely checklists for the girls’ presentation if you Google, but I would have thought you already have enough.

Thanks so much @LightTripper we don't have the Molly Potter ones - they look good! (ours are some Usborne ones).

We recently completed our school's APDR form (Assess, Plan, Do, Review), and suggested exactly what you've mentioned with the scaffolding. We're meeting his class teacher in a few weeks time to go through it.

She's lovely but made the comment "I wouldn't know he had a diagnosis" I think may be she thought it's what I'd want to hear but it's actually made me worry she's not picking up on things. For example, I know he often wants to join in on games and things but does know how and can appear aloof and like he wants to be on his own. Or he 'joins' in but does really get it and then sort of gets abandoned.

That's a good point about how much they want to socialise. DH thinks I'm getting to anxious about the social stuff and that he'll find his own groove, it's only been a few months etc. etc. but I can't help but think support here is exactly what he needs.

Anyway, just a bit of a rant. I realised after speaking to the SENCO a few weeks ago that I've not had anyone to really talk about any of this since his diagnosis in March, just DH.

I mentioned DS's diagnosis to two close mum friends who I thought would be a source of support and they have literally never, ever asked about it since I told them. I said to DH I just can't imagine if the roles were reversed that I wouldn't ask how they are doing or how their kid is?!!! I am just assuming that they don't want to 'pry' but I really don't get that and haven disappointed by them.

Sorry typo! I know he often wants to join in on games and things but DOESN'T know how

DD was like that when she was little (pre-school). Would run up to kids playing games and clearly wanted to be involved, but had no idea how to do that! Or would get distracted in the middle of a game by something else, and then wonder why all the other kids had wandered off!

I think there has to be a happy medium between giving them down-time to chill and supporting some interaction skills in a way that's appropriate to where he is developmentally (i.e. pushing on an open door/pursuing an existing interest where the skills to support that interest just aren't quite there yet).

If you're only doing an hour or two a week then in my view that's not too intense/exhausting. It will either have no effect (no harm done/just an extra playmate and some extra attention which is probably quite fun as DD always preferred playing with grown ups than children anyway), or it will help a bit with just starting to see how those interactions can be fun and positive (which has to be a win, as it gives him more options to interact or not as he chooses later - whereas if he doesn't know how, he doesn't have the option).

Honestly DD still says she finds chit chat difficult and doesn't know what to say (age 8). I tell her it's easier as an adult as all we ever talk about in those kinds of situations (i.e. acquaintances rather than friends) is either the weather, travel/traffic, or what we did/are going to do at the weekend (of course I am autistic too so it's quite possible this was a bit of an oversimplification, but it's how I get by at the school gate 😁). I think it's harder for kids!

Interestingly DD's best friend has ADHD and I do think that often ND kids just "get each other" a bit better and have different/more compatible social expectations of each other, compared to NT kids. But it can be hard to find other ND kids the same age at that stage! Have you been invited to do Early Bird/Early Bird+ yet or anything like that? That's quite a good way to meet parents of other ND kids - or there may be an NAS or other SEN parenting group near you, and you may be able to find some ND playmates for DS to see if that works better?

hiketocake when ds was diagnosed, on a night out, dh told various friends of ours who are part of a group where he used to live and not one single person got in touch with me about it, or even mentioned it when I saw them afterwards. I get that perhaps people don’t know what to say but I was honestly shocked that they said nothing. Well actually apart from one who did the ‘all kids do that’ spiel. I’m sorry you’ve experienced it too, worse for you as they are most likely local, closer friends

Regarding social skills, can you do play dates with friends children and/or family members. You can ask if school are able to run a small social skills group - there may be other children who would benefit. If you get SALT then they can help with this. Play lots of turn taking games at home, starting with more turns for him, working up to alternate turns.

I also think that it’s not imperative for dc to share all the time. It’s perfectly ok for them to say I’m playing with this right now but you can have a turn when I’m finished.

Talkability by Hanen is for older, verbal autistic children and there are a few books on social games for autistic children.

Hello to everyone else.

And yes, I agree with Light, try going to some local SEN sessions and you will meet some other parents.

@LightTripper and @openupmyeagereyes

Thank you so much, for the suggestions! I vaguely remember emailing early bird which I will chase. And the social skills group sounds good, the senco said they don't have that at the moment but I will mention it when I meet with his teacher

Yes there is one boy DS has consistently mentioned and I have wondered if he may also be ND. Would love for him to have at least one friend as he does seem to observe relationships at school and seems to know exactly who everyone prefers playing with (I literally went though all the names in his year that I knew and and was astonished that he could tell me who preferred playing with who).

And I will deffo add turn taking games to the Christmas List. We only have grabolo at the moment which he's quite good with. But then likes to go off and take the pieces for his scripted pretend play, which is cute.

@openupmyeagereyes ugh! I know I can't believe people can be like that!! Sorry you've experienced it too. I have actually ended up bringing it up in conversation myself to make the point that it is ok to talk about my son and his autism - I don't feel awkward about it so you don't have to either, but it didn't really register.

@LightTripper thats great to know that about yourself. Knowing what we know about ASD now and examining our first and second degree relations we've realised there is definitely ND in our family, including ourselves. Though we haven't really taken the time to think about whether we should get a diagnosis - something to think about!

hike you don’t need to buy games necessarily, just taking turns pushing cars down a ramp, that sort of thing, is good enough.

We got a book from the library that had some quite good ideas for that kind of age. Here is a link in case you want to have a look: www.wob.com/en-gb/books/tara-delaney/101-games-and-activities-for-children-with-autism-asperger-s-and-sensory-process/9780071623360?

A lot of them didn't seem very exciting, but with 101 there is almost bound to be something engaging/worth a try!

The one that DD played with the SLT at school at that kind of age was pop up pirates, which she seemed to really love - I think it's very exciting/rewarding when the pirate pops up, so maybe DS would like that as an early turn taking game?