Nursery concerns - worried and confused

[TippetyTapWriter]

Hi, don't really know where to start with this, just feeling very confused and worried.

Ds (3y 8m) started nursery in September doing his 15 free hours. Within a couple of weeks they asked us in for a meeting and said they had some concerns. He was basically unable to cope with other children, with transitions, with routine and was having huge meltdowns over everything. They put some strategies in place e.g. a now/then chart and egg timer and said they'd keep an eye on it. Recently had another meeting to review. Things have improved slightly but he's unable to cope if they withdraw the strategies and is unable to take turns or share with other children, not interested in playing or making friends, lacks eye contact, is controlling and wants everything on his own terms, and is very literal and unimaginative. They brought someone in to see him who agreed and he has now been referred to the local SEN type service.

But he's not like this at home or with me. He never has meltdowns except for what feels like normal whingy threenager stuff. He's absolutely fine with transitions. Totally fine with eye contact. He loves going to new places, is fine with changes of plans. Gets sarcasm and humour and facial expressions. Loves supermarkets, busy cities etc. Doesn't seem sensitive to any sensory stuff though he does like to chew on toys. He's really imaginative and creative. Always coming up with his own songs and stories and play scenarios etc. He was a bit high needs as a baby, a bit quirky, super smart, obsessed with trains (also fascinated by lots of other things), a bit unruly and boisterous. But very social, interested in other children though clearly a bit clueless at trying to play with them. I always put this down to lack of practice as I've never managed to make mum friends and arrange play dates (I have social anxiety, cue massive mum guilt!).

Of course everything nursery are saying sounds like ASD though they are tying themselves in knots to avoid saying so (which I understand as he has no diagnosis and they can't diagnose). But there's no explanation from them why they think he's struggling or what I need to. He will have another assessment but I couldn't work out what happens next. They haven't mentioned any sort of diagnosis being required but they have said he won't cope at primary school without new strategies and extra funding for classroom support. Surely school won't do any of that without a diagnosis? I'm just going in circles wondering if he does have ASD. If he does I want to know. Perhaps that's the next step after this second assessment though they didn't say so.

Don't really know what I'm asking. But I guess: what should I be doing? Is there anything I can do to help him socially etc? Has anyone been through this and how did it turn out?

He's such a smart, funny boy. It's so hard to imagine he'll struggle at school :(

Sorry I didn’t respond to earlier message- still in the midst of potty train hell here lol!
No advice ref: assessment process, but sounds positive that they are acting quickly so your little one can get any support he may need.
Good luck with it, would love to hear an update with how you get on..
My boy was visited from a SENCO from local authority on Monday who gave some tips and set goals for his preschool and have health visitor follow up next week so I think we may be in same position soon x

Re: paediatric assessments for us it was usually a couple of professionals (and often a trainee on top) - one playing with DD and the other talking to us about developmental history, etc.

Ours generally ended by saying "let's see where we are in 6 months" until the last one (aged about 3.5) which said they would arrange for her to be seen by the diagnostic clinic (where she then did the ADOS and we got the final Dx when she was just shy of 4).

In terms of what they say his struggles are, that sounds very similar to DD at the same age. School arranged SLT for her who worked a lot on turn-taking games, sharing information, sequencing stories, and other things that just help with interaction and making friends. She also had an adult with SEN experience come in once a week to support her play at break time (just encouraging her to interact with the other children around, or helping her accept if they wanted to come and join what she was doing - which they often did as she thinks up very fun interesting things to do).

They've both finished now as both felt she was doing well by herself, but I do think it really helped bridge that gap between nursery and the start of school. Maybe you could look into whether there is anything similar you could set up for your DS?

We also started to read a lot of books on emotions, books on being friends, etc. (Molly Potter has good books on both though I know some kids just aren't interested!) We also started looking out for books about difference being good (I've posted lists before if helpful) and using the "You Choose" and "Just Imagine" books to encourage turn taking/conversation (e.g. we asked DD which planet she would visit, which house she would live in, and then prompted her to ask us the same - reducing prompts gradually over time) as well as playing turn taking games at home (Pop Up Pirates is good, and also the various Orchard Games).

And for you. I know that relief and sadness/anxiety mix very well. It's so hard not to be worried about their future but he sounds like a splendid person, I'm sure he has a very happy future ahead of him with the right support.

Those sound like great interventions lighttripper, just the sort of thing ds needs. Any idea how I'd go about getting something like that set up? Or maybe I wait until the paediatrician has seen him.

Thanks for the book tips etc. I will definitely look into them. I'm totally stumped how to help him get better at sharing and turn taking. He gets so irate if he even notices someone looking at a toy he's playing with, though he's normally ok if it's me or dh but he still wants to be in charge. I used to just watch and ask/answer questions. Now eg if he's playing trains I'll try and gently take control a bit e.g. 'I'll be Thomas, Who do you want to be? Look, Thomas is taking some freight to the dockyard....' but most suggestions are met with 'no'. 'No, that's not freight it's coal. No that's not the dockyard it's the quarry' etc etc.

We have some orchard games but he has no interest in playing them how they're 'meant' to be played. It's impossible to take turns because e.g. we have the shopping trolley one, he'll just grab all the baskets and trolleys, line them up and say it's a trolley train, then load a random selection of shopping ('ds, look this is your list, you need apples'. 'No, I'm shopping for ubercorn's birthday party, he needs eggs for his cake and tomatoes and etc etc') then run off with all the bits to another room where he builds ubercorn a house and gives him a bath in dh's shoe... It's just this constant need to do everything his own way all the time. And often his own way is great and imaginative but he absolutely refuses to ever do the 'expected' thing. He's the only person I know who eats a banana from the middle?! Like it's a slice of watermelon! Weirdly his imaginative play is normally really social. His toys are always having parties or playing games together. Today they had a sleep over. He has a load of dog toys he loves and they are a family with daddy, mummy, son and baby daughter. He's been putting nappies on them, giving them baths, tucking them into bed. They come down and have breakfast with us in the morning. He tucks them up in his bed at night. It's just real people he's less interested in!

raaraa, sympathies on the potty training. Hell is the right word! We've not made any progress here. We read Poo goes to pooland. He liked it, but said that it was imaginary because poo goes to the water treatment plant, thought for a bit, then decided the water treatment plant must be another name for pooland! He's asked to read it again a few times but it's made no difference.

As well as that he's started getting aggressive when he's upset, which he's never done before. He's bitten dd twice, tried to bite someone at nursery, and started pushing me and dh when we tell him off or do something he doesn't like, like turning the tv off. I'm not sure what to do. So worried it will escalate or become his standard response. I know small kids often do things like this but he's never been aggressive before :(

DD was in a private nursery at the time, which she's now in the school part of, and they organised it for us. They already had an SLT coming in every week (I think she was helping more generally with social skills, dyslexia, other issues, not just ASC) so that bit was easy. For the play support they recommended a nanny who had experience with SEN kids and who I now know also comes in to support at least one other kid at DD's school (he's older and I don't know if he's diagnosed with anything). So again they had the model in place and we could just piggy back onto it. We pay for both. The play support was £15 for an hour (basically a central London nanny rate - amazing value as she is briliant) and the SLT was £45 for 30 minutes (expensive but we had two SLTs and I think they were both really skilled: from the London Children's Practice).

If you're in London PM me and maybe our support person is even a good match - or there is also a nanny agency called SNAPcare who do SN nannies who might be able to help. Otherwise I think I would talk to the nursery first to see if they think the concept could work in principle, and if so if they can recommend anybody. If not a local nanny agency would probably be a good starting point or if you've got a local NAS group there might be parents there who would be able to suggest somebody?

In terms of the turn taking play, we were sent on an ASC support course organised by the Local Authority for parents and the person running it was great. His advice was "make yourself useful". You have to find ways of showing them that playing with you is more fun than playing without you (and once they need your help then you can start to incorporate turn taking or doing your ideas and their ideas more easily). E.g. we do "sofa soft play" at home (dragging all the cushions off the sofa and bouncing around). But DD needs our help to move the coffee table and set it up, so it is then only fair that we've done the work so we get to do our ideas as well. I think often kids on the spectrum have a very strong sense of logic and fairness, so maybe you could appeal to that to e.g. add some of your ideas to games that he already likes playing? We also find offering choices works. E.g. if you want to be in his game you could say "shall I be Ubercorn's teacher or the policeman?" or if it's not a role playing type game "shall I draw a stable for Ubercorn to live in? What should it look like? I think it should have a green roof ... no? What colour should it be?" etc. And then once he's enjoying you helping you can start to try to get him used to you having a say in what happens (so he can (a) see the fun in getting other children involved and (b) letting them do their ideas, not just his).

Your DS is also very young but sounds very bright, so he probably will enjoy the turn taking games in time - but whenever we've managed to solve a problem it has basically come from looking at what DD actually enjoys (not what anybody thinks she should be enjoying) and going and "meeting her there" IYSWIM.

Re: getting aggressive, is he able to talk about his feelings afterwards? I know he's a bit little for that but it's probably worth starting to try. I think a lot of ASC kids find their emotions very overwhelming at the time, and can't override their impulses in that moment - but later are able to process what happened a bit better, and you might be able to put some plans in place? So e.g. "DS, how did you feel when I turned the TV off, it looked like you were really angry? How does that feel inside? But we do have to get sleep sometime, so how can we make it easier to turn the TV off?" Basically let him help make the plans for how to manage difficult situations. This is how we managed school drop off and it still took a while. Just before it got better my DD said "Mummy I can feel that feeling coming where I really don't want you to go" and I think the fact that she understood what was happening to her and could feel the emotions starting to flood in really helped her to manage the transition and not be so overwhelmed. For a long time we had almost a ritual at drop off (and still do to some extent, though it's loosening now and sometimes she forgets a bit or we do it a bit differently without getting too upset ... I see it more as a tool box of strategies we both use to get through the transition - hug button, pattern of high up and low down hugs, silly faces wave, certain phrases we use, etc.).

It took us a long time to crack potty training, I think partly as we started too early (pre-school started at 2.5 and wanted them out of nappies, which I think is too early even for many NT children and certainly for NeuroDiverse). Interoception is often an issue so they just aren't getting the right signals to tell them they need to go. We ended up on Movicol for a long time due to poo-holding (have tried coming off many times without success... just came off for the last couple of weeks and madly touching wood seems to be working). I think you really have to just wait until they are ready. We found pressure and putting attention on it made everything worse, so in the end tried to basically ignore everything except her telling us if she'd had an accident (i.e. poo in pants is totally fine as long as you tell us so you don't get sore). Adding stress/pressure to it just made it worse.

So we'll hopefully get one summer off poo in pants between DD finishing (touch wood) having issues and DS starting in the summer/autumn (3 years after DD started) .

Another thought - could you get a toy that is for you that he wants to play with? Then you can demonstrate good sharing by letting him have a turn, but it is still your toy and he can only play on your terms? That might be another way to show him what it's like to let other people do their ideas - i.e. model the behaviour you want to see?

You are literally describing me and my son 18 months ago. Sept 2017 he started free nursery the same month he turned 3 years old. Within 6 weeks the teacher asked me to a meeting and described some "red flags" she'd noticed, like you she was careful not to say autism but I knew what she was hinting at so I asked outright and she said yes these could be signs of it but as he was very young only turned 3 she would like to observe him with my permission and build a report on his behaviour and abilities and then decide at the end of term for Xmas if she would recommend him to be assessed for autism. His issues were an American accent, wrong intonation on certain words, his vocabulary being ahead of his peers, trouble with transitioning, inability to share, unimaginative play (though like you, I think him to be extremely imaginative at home!). The teacher said a few years ago it would have been classed as aspergers but they no longer diagnose this and it all falls under the umbrella term of ASD. In my case they observed him and implemented strategies to help him cope and then at Xmas time gave a referral letter for us to take to the gp. He was referred and assessed by Sept 2018 and officially diagnosed. The assessment involved a psychologist playing with ds conducting tests on him that he was not aware of disguised as play while another psychologist spoke to us about his history from birth, what was he like as a baby, what are his eating habits, sleeping habits etc, the whole thing took about 90 minutes. That month he moved on to a full time free nursery (being born 1st Sept he had the choice to do 2 years of nursery school) and this new teacher was sure he wouldn't cope with primary school and asked the educational psychologist from the EA to come out and assess his needs at school. When we met with this man after the assessment that day we were informed that my son was so high functioning he would not be approved for a class room assistant but he would benefit from monthly checks to see how he was coping during the transition to big school. Now we're 3/4 of the way through this school year and he has managed to make 1 real friend and is popular but struggles to allow the other children to play their way as he's very controlling during play time which the other children get bored of doing it on his agenda but he absolutely loves going and is a happy boy for the most part. We have had issues with hitting for a small period last year but we used time outs consistently for this and explained about gentle hands and how we don't physically hurt people we love. We now have new issues developing over time such as sensory issues about seams on clothes but we deal with each issue at a time. We have been referred for parent classes on how to help with certain issues he may go through or already does. We feel lucky that he is high functioning and able to attend mainstream school and that he likes school and is happy.

Nogodsnomasters this really resonated with me: "unimaginative play (though like you, I think him to be extremely imaginative at home!)" - we had the same with DD. When she was Dx'd I had a big spreadsheet of notes I'd taken over the years of the types of play she was doing at home, on playdates etc. and the assessor said how useful it had been as she didn't see that at nursery. I think it just goes to show that a lot of things it's assumed autistic kids can't do they absolutely can and do do - but like anybody else they are less likely to let their imagination run riot in a situation where they don't feel 100% safe and comfortable.

lighttripper I understand where you are coming from and it's great you made that spreadsheet, what a good parent you are, genuinely. Exactly like you we were seeing abilities at home that they were not seeing at nursery and I informed the teacher and psychologist of this. You're right it's all down to them feeling safe to express themselves and sometimes around peers they do not, but this doesn't mean they CANT do those things.

Thanks for taking the time to make such helpful replies. I really do appreciate it. Outside of here it feels a bit lonely. Even dh doesn't quite get it. He doesn't see much of ds in the week and doesn't have to do the nursery drop offs and collections, every day dreading the debrief and the mum chat pretending everything is fine! You both sound like such amazing mums. I worry I'm not going to be a great advocate for ds. Too many of my own issues, no confidence. I'd rather pretend it all wasn't happening. I'm glad your dc are doing well x

Funny you mention about things being different at home vs school etc. I stayed an hour at nursery the other week just to see how things were there. Ds accidentally trapped another boy's finger in a toy and got really upset. They said they'd never seen him show empathy before! At home he's always worried and upset when dd cries. He gives her toys or does silly dances to cheer her up or hugs her. He does get quite worked up himself though and it normally ends up with him crying worse than her. He's very sensitive. He gets upset when the wind blows the blossom off the trees because he feels sad for the flowers!

And yes he's so imaginative at home I almost laughed when they said he wasn't imaginative. I almost feel he's too imaginative if that's possible! Everything has to be something else, get complicated somehow. There's no such thing as a straight answer. E.g. 'Do you want jam or cream cheese on your crumpet?' 'I want both and peanut butter, I'm going to make a crumpet sandwich with two crumpets and jam and cheese and butter and peanut butter and it'll have grapes in and oranges and ... mum, what would happen if you mixed all the types of jam in the world together? This is my jamomatic 2000 (starts grabbing random items and trying to put them together). It turns jam into poo ... Etc etc...'. To every single question I ask!! Drives me a bit mad. I sometimes think it's just away of avoiding answering a question. He doesn't like being put on the spot so to speak. He finds it funny to give wrong answers. Or if it's something he doesn't want to do he has an annoying habit of pretending not to understand me. 'Ds, bath time.' 'I don't understand the words you are saying.' 'You know what bath time means.' 'I'm sorry, I don't seem to be listening to you.' We had that one last night. I admit it made me laugh though I didn't let him see ...

Anyway, the gp has made the referral. It'll probably be a few months before we hear anything. It's going to be so interesting to see what someone else makes of ds instead of just driving myself mad with my armchair analysis.

This is getting long now, but meant to add re the sharing etc I've really tried to lead by example: saying yes whenever possible, offering to share whatever I'm eating, letting him help with whatever I'm doing, making myself helpful, being easygoing and relaxed etc etc. Ds seems a bit happier. He has voluntarily given dd and me a turn a couple of times and shared some playdough unprompted. Small steps but it feels like progress.

I love the jamomatic! Turns jam into poo!! (It's DS, isn't it?? ).

He sounds brilliant. I'm sure he will be just fine. It's brilliant that he's so good with his sister and starting to take turns. If he does it naturally, even infrequently, it gives opportunity to praise him for it and show him that benefits flow from taking turns and sharing and it actually feels good too. He will get there.

I think the number one thing we can give our kids, knowing they are going to be a bit different, is the confidence to own that difference and revel in it. Your DS sounds very fun and I'm sure other kids will gravitate to him over time, and he'll learn it's fun to let them in as he gets more comfortable and relaxed. Certainly that's what we've seen happen with DD.

I really hope so lighttripper. It's so hard to watch him in company recently. He seems even worse or maybe it just stands out more because he's older. But he's started to just sort of ignore everyone the minute we're in someone's house or we have guests over. He won't even respond to me. He plays by himself, eats, runs around etc and when we leave he says he had a great time and wants to go back but he doesn't even acknowledge anyone. E.g. last play date the other little boy really wanted to play he was saying 'ds, look at my lego, ds this is my lego, ds? Ds? Come and play lego? Mummy why is ds ignoring me?' Argh. Made me want to cry. And ds was like that the whole time we were there. And he loves lego!

Got an appointment letter from hospital - for mid September! So he won't be seen until after he's started school!

I think that would be ki d of par for the course here too! Is the school he is going to (if you know yet!) linked to the nursery he is in? Either way I would contact them to flag he is being assessed and see what they can already put in place. Hopefully they'll have a few settling in activities and maybe even a home visit in place. No diagnosis doesn't mean no support, but does mean you may need to chase it.

In some ways I hated the waits but in other ways I enjoyed just enjoying DD. And it does give a chance to read up and do your own research. He'll be a different boy in September in any case, whether he's on the spectrum or not!

Thanks! It's not directly connected to the school but I think they do talk to them. They've been saying for a while they'll liaise with the school to try and get some things in place and they've said they'll let them know the situation re: assessment. I just feel back in limbo again after thinking I was close to getting some answers or at least some kind of handle on what's going on. I'm still in that loop of flip flopping from thinking he's fine but quirky to thinking he's definitely got ASD/ADHD/dyspraxia/SPD etc etc!

He's been off for a week with a cold and it's been nice spending more time with him. He's been a lot more cuddly and affectionate than usual recently (though he still doesn't do cuddles really, more leaping at me and jumping up and down!) but yes I am trying to just enjoy him. Can't believe he'll be off to school in 5 months.

Thanks again for listening x

Sorry to bring up an old thread OP but having read it I am having very similar issues with my DD who is 3.5. Nursery have flagged up many of the things your son struggles with ie the transitions and sharing. A HV is attending next week to observe her and possibly start the ball rolling for ASD diagnosis. How do you cope with the stress of it all?

Hi 60second. Sorry you’re going through the same thing. I’m not sure I do cope with the stress to be honest. I’m finding it very hard! The times I feel best are when I just spend time with ds and forget about diagnoses and behaviours etc and just enjoy him for himself. He’s still the same lovely little boy he was before this whole process started. I also try to keep in mind asd is neurodiversity. I know a couple of people with aspergers (one a good friend for many years and someone else I only know a little) and they are just people like anyone else. They have jobs, did well academically, one is in a long term relationship. But yes it’s very hard. I’m not naturally a positive person and suffer from anxiety and depression so any kind of worry is hard! And worry about kids is the hardest of all!

Thank you for replying. Since it has been mentioned by nursery all I've been doing is looking online and reading as much as I can about ASD. My next door neighbours son is on the spectrum so I asked a lot of questions. She is back in nursery tomorrow and I am dreading it and I know I shouldn't be. Hope the stress gets less for both of us.

@TippetyTapWriter we have one of these too. DS is 2.5 and thoroughly lovely at home. At nursery (just started) or playgroup (previous 18 months) he's mute, avoidant, obsessed with fans, won't get off the swings. Very occasionally would relate to another child, but almost never.

I've just come out the other side of this. DS is now diagnosed and settled in Reception. I don't spend practically my whole life worrying about him like I did when we were going through diagnosis and he was starting school.

The wait is the killer. The not knowing, the wanting him to be diagnosed but also just wanting the whole thing to be made up and for it all to go away like a bad dream.

I am still having to work at seeing all the good things that other people see in him. I focus on the problems and how they are going to result in x, y or z in the future.

Imagination, and not having a lack of it, was what stopped me seeking a diagnosis for a while. Then I worked out that, yes, he had a flipping awesome imagination, like nothing I'd really come across but what he doesn't have is social imagination. He doesn't pretend to be other people really, only things. He struggles to think about how someone else might be feeling. It doesn't mean he doesn't care about or love his friends or family, far from it, but he won't spontaneously know things you take for granted, hence why sharing is so hard.

Try doing something he does like doing: bouncing, licking cake mixture from a bowl, whatever, and see if he will let you take turns with him. See if you can make the turn taking the game itself. Can you get him to copy you? Run a pinky over the bowl, then your whole hand, then lick it with your tongue or something. Be outrageous or funny. He might pause and wait to see what you do next. Jump in there and have your turn. He will find it much easier to do turn taking (and eye contact etc) with you than his peers or others. Start where it's easy and move from there.

Thanks OldMcDonald. I still have moments where I convince myself everything is ok and it’s just stuff he’ll grow out of so I’m still dreading the diagnosis I guess, but it’s interesting to hear how life might actually be easier afterwards. I do think I’m going a bit mad right now. It’s like juggling the quantum cat in my head where I believe he both is and isn’t autistic at the same time. I’m also finding it tricky talking to other mums etc. All the conversation is about school starting soon and I just don’t know how to join in or answer questions when everyone else is talking about buying school uniform etc and I’m setting up transition meetings, calling the SENCO, doubting if ds will even survive one day of school etc etc. It would be easier to be ‘out’ I guess.

letsgo I find the difference between home and nursery really hard to understand too. Ds is so social at home. He talks all day long, great conversations and jokes etc, wants to do stuff with us, wants to play together (though yes, is still quite controlling but increasingly open to suggestion I think), is really empathetic and protective to his sister, voluntarily and unprompted gives her snacks and toys etc, eg sees her looking at something he’s eating and will break off a piece and give it to her ‘here you go dd’, or eg finds two feathers in the park and gives one to her ‘one for you and one for me’. Yet at nursery he struggles with the most basic interactions. To be honest though I sometimes find the other kids strange. Eg ds will go running up to a boy he knows ‘hi x!’ and the boy will just turn away and ignore him Sometimes it seems they somehow already don’t want to be his friend. He does stand out a bit, but I thought it might be a couple more years before the social exclusion started!

Ahhh, the quantum cat is a brilliant description - that's exactly what it's like!

I love OldMcDonald's ideas for turn-taking too. Tying it into something they already want to do so it's fun is the key I think. And peers will always come later (probably quite a lot later) than with you, I agree, so you just have to keep modelling and practicing and eventually they get there.

To be honest even with Dx there is a bit of that, as there are ways in which DD is autistic and ways in which she isn't. No autistic people have all autistic traits, and most non-autistic people have some autistic traits (e.g. nearly everybody would jump up and down and flap if they won the lottery, but probably not just because they saw something beautiful: it's just a question of degree).

I also empathise with the socialising thing. I remember once at nursery when DD was really not saying much to other kids at all, and out of the blue she asked another kid at the sink next to her (who had just got back from holiday) "How was your holiday?" - I was stunned but the other kid just stared at her and walked away - I was so gutted for her! I obviously said what a nice thing that was to ask, but it's a difficult age as TBH all children's social skills are pretty ropey at that age anyway so they don't get much positive feedback.

For us we found things actually got better at reception as it's more structured and that seemed to work better for DD, plus I think her skills came on. Plus the other kids started to be interested in what she was doing (she tends to come up with different and interesting ideas for how to play, so other children have gravitated to her at times even though she could be aloof), and she started to let them in and increasingly let them add their own ideas too.

From what I've read I think it's pretty normal for ASC kids' social development to be partly a bit behind where their peers are - so they make the big "leaps" later. So there will be periods when they are all kind of on a par and it works well, and then suddenly the other kids only want to talk about One Direction or Football or Armies while your kid still wants to pick up worms and make up silly songs and it will be tough again for a while. So we're kind of braced for it to be difficult again in the future, but we are definitely going through a patch now where DD is socialising well and enjoying it (obviously a bit less than her peers, with more gaps to do her own thing, and on her own terms, but that's all fine by us and - apparently for now at least - by them too).

The turn taking thing is strange. He actually can take turns (at least with us) but he’s never really focused enough on what we’re doing to take more than one turn if that makes sense. Like with the cake thing I wouldn’t even be able to get the words out to explain how we were going to take turns because he’d be chatting away, running around the kitchen, grabbing the bowl and running around with it, hitting it with a spoon, all more or less at the same time and I wouldn’t be able to get a word in. There’s no chance to take turns!

At home I’m starting to think he displays more adhd type traits than asd. Also more sensory stuff recently. He’s always chewed things but it’s got so bad now I’ve bought him some chewable necklaces because he was ingesting lots of plastic, rubber, paper, crayons etc. I don’t think it’s pica, it’s just he automatically puts whatever he’s holding into his mouth and chews on it. He’s also more sensitive to noise recently. Eg has started putting his hands over his ears and saying it’s too loud if an ambulance goes past or even just at the sound of the traffic. And he’s started hand-flapping a bit when talking or excited, and running up and down a lot more or sometimes in circles too.

Lighttripper I feel for your dd about the holiday comment! My heart breaks a little bit thinking about it. Ds often has similar eg he’ll wish someone happy birthday but they’re not listening. And as you say they don’t get that positive feedback! I can see ds feels confused etc when he gets ignored. He often starts acting out and getting hyperactive afterwards which seems to be what he does when stressed or upset.

I’m so glad your dd is doing well socially. I’m really not confident ds will unless he finds someone more like him who’s happy to put up with his randomness and boisterousness and run around screeching while exchanging train trivia!! And then suddenly sit down and have a really calm and insightful discussion about the solar system and galaxy formation and then make up a nonsense language for five minutes before inventing a new underground system for dogs ...

TippetyTapwriter I wish we were nearby, I'd love to have your DS over for playdates with my DS, I think they'd get on brilliantly.

DS over here has periods where he looks very hyperactive and ADHD-ish. Our SALT/OT team suggested that actually this is fairly standard ASD sensory-seeking behaviour, which is coming out possibly when he's tired or there are sensory demands he can't cope with. Is there any pattern to the hyper behaviour?

Re: social interactions, I've started reading the Hanen books, More than Words, and TalkAbility - as starting points for explicit teaching of social skills. Our SALT/OT team use Hanen. We are probably going to also do a remote version of ESDM, reading the ESDM parent manual with monthly Skype sessions with a therapist, and then a 6-week visit to our nearest ESDM clinic at the end of the year (which happens to be in the same suburb as DH's parents' house, useful for the annual Christmas trip). Unfortunately our nearest clinic is about 2000 km away!

At our parent-teacher evening at nursery tonight the staff agreed that if they could foster some jumping and giggling kind of interactions with one or two other kids, DS might see those kids as jumping/giggling partners even if he (and they) aren't yet up to "Hello X, how are you today? What's that you're playing with?". And they've also agreed to try to get him together with another boy who likes the same little electronics kit, and make social stories for them both in the children's photo records, where they have photos of what they did at home using the kit, and then the staff also take photos of what they've done together at nursery.

Turn-taking - what you're asking might be too difficult. We have that with playing dominoes - where DS can do it correctly for maybe 3 turns then throws them off the table. So we got a really really simple ELC fishing game; and a vile plastic crap game where you have to use ice axes to tap out ice hexagons from a frame while keeping a penguin on the ice floe as long as possible. DS really enjoys taking turns with them now, and has developed enough self-control to start using the spinning arrow thing with the penguin game which means we can play a more complex game (it says tap out a blue or a white hexagon, miss a turn, etc). It took maybe 20 iterations of the penguin game to get from total carnage not listening to anything, to using the spinning arrow to say what each turn does?

DS was diagnosed at age 5 and as he was my first child I didn’t really understand what a ‘standard’ 5 year old looked like. I tended to put any difficult behaviour down to the fact that he had autism - but having had other children after him that don’t have autism I see how much difficult or unusual behaviour is down to just being a young child. I almost feel sorry for DS when he was younger as I was over analysing all his behaviour and interactions and maybe expecting a bit much of him.

I was also very depressed about DS having autism around the time he was diagnosed. Like you, i had social anxiety - but I think I was projecting my own difficulties onto DS. It took me about 4 years to come to terms with it. Now DS is settled into school and very happy and enjoying life I feel a bit stupid to have ever been so devasted about his diagnosis. I hope things improve for you.

In hindsight, I feel like my feelings about DS’s diagnosis were a bigger problem than the diagnosis itself.

Have a look at this link - I like it as it explains the process I went through while coming to terms with my son not following the standard path.
niederfamily.blogspot.com/2010/10/amsterdam-international.html?m=1

letsgo that’d be nice. He doesn’t seem to have clicked with any of the kids at nursery or any of the ones of mum friends I’ve (painstakingly!) made through groups etc. Occasionally he’ll play really well with a random kid in the park but they’re nearly always 1-2 years older. I feel bad because everything I read says play dates etc are great practice but we hardly have any. Partly social anxiety etc on my part but when they do happen ds normally ignores the other kid and I think the mums don’t much see the point when there are loads of other kids their ones have a great time with.

In general I feel like I’m not doing enough to ‘help’. We’re not doing anything really except waiting for this appointment in September with the paediatrician. I’ve no money for anything private and it would seem strange to me when he doesn’t have a diagnosis. But then I keep reading that early intervention is important. I did think about going to gp to ask for a hearing test as if this is something paediatrician would do first it makes sense to get it done now so we can move to the next step quicker. Has anyone taken their dc for a hearing test? I’m not sure what’s involved but I’m really not sure ds would sit still or engage well enough for it to work!

Re the hyperactivity, it’s always been present. He was one of those super alert babies from the start (well after a week in nicu and another week of bad jaundice!). Always into everything, always needing to be moving even before he could move. I never once managed to sit with him on my knee - no newborn cuddles here - he had to be constantly carried around the house. My uneducated guess would be there’s definitely an element of sensory seeking. He also gets more hyper when he’s tired or stressed.

I should try harder with the turn taking games. We’ve got pop up pirates. He’s just contrary. He never wants to do anything the way it ‘should’ be done. He comes up with his own rules or just gets daft and refuses to listen.

Thanks super. That definitely all resonates, almost painfully so! I’m guilty of overanalysing everything. And too much googling. Like I feel one day I’ll read something that will explain away everything but it never happens. Thanks for sharing the link. I’m still on the plane and the captain is making worrying announcements but I don’t know where I’m going to land!