Community paediatrician referral

[Confusedandworried321]

Hi all

I’ve name changed but regular poster. I’ll try to keep this as brief as possible, but sorry if it’s too long.

DS is 3.6. In September he started a state run play group. In January, the manager asked me if he’d ever had his hearing checked, as he doesn’t always respond to them and they don’t know if it’s selective hearing or not. I suffer with anxiety and have always worried about ASD since he was born (for context I also worried a lot about miscarriage, pre term labour and stillbirth while I was pregnant, and before DC, used to worry I had MS) so this worried me straight away and I asked if they had any other concerns. The said they had some “small” concern, such as him repeating stuff, lying down on the floor to play with cars, humming. They said he is very good one on one when staff engage with him directly, he seems bright and his speech is good.

His hearing test was fine. He does mainly play with vehicles, and lies down on the floor to play with them a lot of the time. He will play with other stuff, but it always comes back to vehicles.

Because I was worried I asked the HV to come and check him. She did what I think was an ASQ, and had no concerns. I actually asked her outright if she thought he was on the spectrum and she said the actual words “he’s not autistic”.

Play group continued to give me feedback when I picked him up, and some of the behaviour was “naughty”/aggressive such as pushing, shouting things in kids faces and not doing what he was told. Because of this, I asked another HV to come for a second opinion. She had no concerns but suggested to refer me to the community nursery nurse for behaviour. The nurse came to chat to me (not to see DS) and said she would be happy to do an observation on him at play group, so today she and the same HV who did his initial ASQ observed him for half an hour.

As a result of the observation, and because of the reported behaviour from play group staff, they’re referring DS to a community paediatrician. The waiting list is 4-6 months. The behaviour they observed was the constant low humming, and also not interacting much with other children. The reported behaviour was mainly doing things and not stopping when asked, eg shouting in kids’ faces etc, getting in kids’ faces with no spatial awareness. They obviously wouldn’t say what it could be, just that they’re not qualified and this is where their expertise ends.

My first question is, does anyone have any experience of the paediatrician appointment? What does it involve? And what happens after, to a diagnosis?

My second question is, has anyone had a referral and if NOT result in a diagnosis?

I’m so confused, worried and upset. I’ve worried about ASD on and off pretty much his whole life and so I can’t quite believe this is happening. DS started pointing at 13 months, and his speech and communication is good. He was late to walk (18 months) and to do other gross motor skills eg sat at 7.5-8 months, pulled to stand at 13 months. He still runs a bit funny now but he’s come on so well physically and is much more confident. He’s articulate and bright, you can have a full on back and forth conversation with him so he doesn’t fit that stereotype of a HFA who has a huge vocabulary but can’t really hold a conversation. He was relatively easy to potty train, at 2.7, he sleeps well (has done since early on) and eats well. He doesn’t seem to have any rigid/repetitive behaviours, other than the humming observed in play group. If he hums like that at home it’s usually when he’s playing with cars or the kitchen etc so he’s making sound effects, but if I ask him to stop he usually will. He used to sing an awful lot at home as well, although that seems to have lessened, and again if I ask him not to he would usually stop. Other than the humming he doesn’t seem to have any sensory issues. He went through a phase which started at about 2.4-2.5 where he was scared of loud noises and would cover his ears, but that went on for a few months then stopped - and it seemed to be much more of a fear than a sensory issue, if that makes sense. It started after he was startled by a really loud blender so although I found it concerning at the time, I knew there seemed to be a reason, and it disappeared over time. He’s still scared of hand dryers but I know that’s common in young children, he’s not scared of hair dryers, helicopters, loud lorries etc and will let us dry his hair no problem. The only time he ever covers his ears now is in a public toilet, and again it seems to be much more a fear - as when we have walked into a public loo and the hand dryer is already on, he’s ok. It’s the fear of being startled which I think he doesn’t like.

He’s not spent much time around other children, and until recently he was an only child. He’s definitely more comfortable with adults, and at his private nursery where he goes one day a week he goes straight to his keyworker and sits on her lap etc. However in the last few months I’ve really noticed him develop socially eg if we’re in the park or softplay he will sometimes approach another child, ask them what they’re doing, try and join in etc. He definitely copies/imitates as a way to try and engage, as I’ve seen that a few times and did find it strange. He also sometimes follows children to try and play with them, even if they’re not interested, which I think was what he was doing during the observation today, rather than “usual” interaction.

I just don’t know. Does any of this sound similar to others with children with ASD? Or any other conditions? Does sensory processing occur on its own, or is it always linked to a spectrum condition?

Hi there!

You sound very anxious which is very natural at this stage when everything is unknown, but your DS sounds brilliant with lots of strong skills so please hold that in mind whatever comes next.

My DD was diagnosed with autism aged 4. We were told she was probably autistic when she was 3. I found it really hard and it didn't fit with anything I thought I knew about autism - she was so bubbly and happy and chatty (!) and imaginative - how could this be??? The things she struggled with (gross motor, anxiety, what to do with kids her age) were just like me as a kid so I just thought "she'll be fine".

She is now 5. And you know what? She is fine. She is autistic and fine. She is super-smart, has friends, has a lot of fun, loves school, we have a lovely life together and with her little brother (probably neurotypical, not sure yet) who she loves to bits. Obviously every autistic child's journey is different but it certainly doesn't have to be depressing. If you want to see some positive videos about boys on the spectrum I'd recommend looking up "Vincentville" on YouTube and Instagram. They have two (very different!) autistic boys and I always love their videos.

The way you describe your DS is consistent with being autistic but also consistent with not being autistic (helpful I know ... sorry).

Here are some things about DD that are similar to and different to your DS. She was late to accept other children into her play. Like your DS, she was late to physical milestones (actually much later - though she's hypermobile and I put it down to that!) Her sensory issues are mainly proprioception/interoception (we had struggles with potty training, unlike you), and a bit of sound (didn't used to like hand dryers but is now OK with them though she still tends to prefer to dry her hands on me , still hates fire alarms) and smell (she always complains the car smells) - but nothing very "obvious".

When she was really little she would often play on her own or alongside, or move off if another child tried to join her. As she got older she got more interested in other children but still didn't really seem to know what to do to get involved in their game. At the moment she plays really well with her peers but we notice she does tire of it more quickly (e.g. at the playground after school she'll join in the group game for a bit but then go off by herself or with one other child to do some project like collecting food for bees or making a birds nest - and on a playdate she might get completely absorbed in e.g. playing with her friend's Lego, even when her friend has got bored of it and wants to do something else, so that can generate some tension but nothing unmanageable so far).

At school she can be a bit anxious: e.g. doesn't like to have her picture taken, doesn't like to join in certain things if there is going to be cheering or clapping (e.g. being class monitor, taking part in sports day beyond watching) but she's doing really well in reading/writing etc. and does take part in lots of stuff (music, dance, show and tell, PE).

In terms of speech she was always way ahead of expectations in terms of number of words etc. In fact DS has been much slower. But now I've had DS (who is 2) I can see that although his language is much slower it's actually more "functional" (DD had hundreds of nouns and could describe in detail what was going on in a book or on TV before she would use that language to ask for a drink or ask for help putting her shoes on). By contrast DS has many fewer words but they are very focused on thing he wants to do and things he wants help with (less abstract stuff, more verbs). I never saw it with DD because I didn't really have anybody to compare her to.

Although it was very tough I'm glad we know, as I think teenage years are often hard for kids on the spectrum, so it gives us plenty of time before then to help her understand herself, how to self-regulate, build her social skills and her self-confidence, etc. - and means if we do hit a crisis later nonetheless we at least know why and can get appropriate help. Certainly my teenage years were a bit tough and I think if I'd understood how some of my traits (which DD shares) contributed to that it might have helped my self-esteem and helped me to manage (or just avoid) difficult situations.

You asked about the paediatric assessment. At ours we always had at least two staff (often plus a trainee), one taking a detailed developmental history from us (ages of walking, pointing, sitting up, etc. will all be relevant so it's worth gathering any notes you have of that in advance) and then somebody in the same room playing with DD and seeing how she played and interacted. I think we had 3 assessments before the formal diagnosis (so around 2.5, 3 and 3.5). We were told at the second one that they thought she might be autistic and at the last one that they wanted to refer her for a full assessment (where they sent a psychologist to observe her at nursery for a morning and also did an ADOS assessment, which was combined with all the developmental history from our previous appointments). She got that assessment just shy of her 4th birthday and was diagnosed.

Although our referral did lead to a diagnosis, I know of others who've been referred but not diagnosed.

Just bear in mind that the fact your DS is bright, is motivated to socialise and join in, is social with adults, pointed early, etc. etc. is all very positive stuff whether he gets a Dx or not. I.e. it doesn't rule out autism, but it means if he is autistic he is autistic in a way that will hopefully be less at odds with the way the world around us is set up than many kids.

And of course he may not be autistic at all.... but I know that doesn't help much, and this period of uncertainty is THE WORST. Hang in there. Just remember how brilliant and lovely your DS is. That thought kept me sane through the whole thing. Keep notes of all the good stuff he's doing, and the stuff he struggles with, and share them with the paediatrician when you see them. The waiting time is actually a good chance to really observe and think about all your DS's strengths and challenges, as hard as it is to wait.

If you want resources to look at while you wait, you could try Stuart Shanker's "Self Regulation" site (self-reg.ca/), or Jessie Hewitson's book "How to Raise a Happy Autistic Child". I think they are both helpful on parenting a sensitive child or child with autistic traits (even if not sufficient to get an autism Dx) so you don't need to wait to see if he gets a Dx before starting to do a bit of research.

Sorry, that was a bit of a book
And they wonder where DD gets her autism from (I suspect they really don't ).

Wow, thank you so much for your post. It's actually made me cry a bit as it's so lovely, thank you. I have to go and get DS from his nap (he still has a nap every few days believe it or not!) so I will reply properly later on.

I didn't want to not acknowledge it first though, as I'm very grateful to hear about your DD.

So can I ask what was the reason for your DD being referred?

It's really difficult for me to say what DS would be like when children try to join his play as I don't see him with any children other than friend's children, and those situations are engineered a bit more I guess. Sometimes I've seen him act what I would think is appropriately when it comes to trying to join in play, eg a couple of times at the park, he's gone down the slide just before/after another child and he's said to them "let's do it again!". Both times I've seen this happen the other child has ignored him. Also one time recently an older child was playing shouting "help" on the climbing frame so he went "I'm coming to rescue you" and again they ignored him. He doesn't seek out to play with children at his play group though, according to the HV assessment. And I do see this as at drop off time he just stands by me, even if other children are all in a little group. He went through a phase of always saying hi to other kids, or commentating, eg here comes x, but again he always seemed to be ignored by the other children, so I can't blame him for no longer doing this. Apparently he has a "friend"'at his private nursery but this is a child a year older who's very full on, "naughty" (he could well have SN himself) and has sort of forced himself on DS.

I'm trying to think back to his language development too. I've got nothing to compare it with as DS2 is a little baby. He definitely asked for things even when he only had one word at a time eg would say things like more, or point to things. In fact one of his earliest two word phrases was "more [milk/banana/houmous etc]". He will now say things like I'm thirsty/ask for a snack/I'm scared/I'm tired, although I couldn't tell you how recent that is.

He asks A LOT of questions, even obvious ones, eg are you having a sandwich for lunch mummy when it's clear that's what's on my plate! But he also asks non obvious questions and more recently we get a lot of "why".

Anxious wise I can see he is similar to your DD. At church play groups that my mum (my childcare) took him to when younger, he was always reluctant to join in singing in a circle and would sit on her knee etc, not joining in all that much. And I do think he massively lacks confidence which is why he wouldn't approach a group of children playing at play group, unless it was something he was interested in. However at the (few) parties he's been to recently (again only kids of friends) he's seemed fine, will join in the happy birthday singing etc. Maybe because he has a parent present? Who knows.

It's disheartening to hear that the process was so long for you. Did they explain why there was 6 months between each appointment?

Does your DD get any support in school? Has she settled in ok in school otherwise? It's encouraging to see she has friends, that's all I want for my DS - for him to be accepted and happy.

She was referred because our nanny was worried that she wasn't asking for things. She had what they called a "passive" or "meek" presentation (you wouldn't call her either of those things now! But I think she was just interested and focused on little things so not always looking for input from us). Because we were already in physiotherapy, in our area once you are seeing two services they will consider you for a paediatric assessment. So either SLT or Physio applied for that and they agreed to see her. The first appointment they were really non-committal and said she was very young, couldn't really say, etc. etc. but by the second one they were suddenly giving us a very strong steer she was autistic.

Honestly we were quite happy with the speed of the process. She didn't need any specific supports, so we didn't feel a lack of diagnosis was holding her back. We had one by the time she started school, so that was the main thing. I think if we'd started the process later (when she was older) it would have been quicker. The 6 months was just to see how she developed, because I think that age between 2-4 things change so quickly. Each time we went to see them she had come on so much (I think that's why I found being told she was probably autistic at 3 such a shock - because she had developed so many new skills since the previous appointment - but of course the developmental milestones they are measured against also change, so unless you're an expert you never really know what they will say). I think it's hard for them to be specific/accurate in a diagnosis any younger unless it's a very clear-cut case.

DD has had some little bits of supports in school (SLT once a week helping with turn-taking and conversations/sequencing, a nanny coming in once a week for break time to help encourage her to let other children join her play), but that all worked well and they both said it was better now to just let her put it into practice, so she's not getting any supports at the moment other than general understanding from the staff that some things make her anxious, and she might need a bit longer to process an instruction, or a bit more of a heads up before they change activities. But no 1:1. As you can see from the other thread, sometimes kids don't need 1:1 when they are young and then do when they are older, so we're not ruling anything out for the future - but for now she's doing well and is just another kid in the class - with her quirks like they all have!

Thanks for replying, it's good to hear how well she is doing and with little support for now.

I honestly am at a loss as to what to think. When I spend time just DS and I, especially when there's no pressure to go anywhere, I think how could he possibly he autistic. He engages me in imaginary games etc, he would rarely just play alone, he always wants our input. He's obviously not like this at play group at all. I think he is more so at the private nursery because the ratios are much smaller.

However when I think about what the health visitors said about how he is in play group (granted during a 30 mins observation) and so many of his other "quirks", I think on paper the evidence suggests he is autistic.

Can I ask whether your DD was diagnosed as HF or not? I don't know whether it matters really.

I can't remember if they said high functioning in the report or not. I think these days the refer to level 1/2/3 "support needs" instead.

I'm pretty confident she doesn't have an intellectual disability, which I think is how they define "high functioning". Like you, she functions perfectly in the context of our family (and honestly I think she functions just fine outside it, but maybe a bit differently).

Here is some stuff from NAS about the different levels. I don't think our local area uses them but pretty sure DD would be level 1 (lowest support needs) and would have been diagnosed with Aspergers in the past (except she wouldn't, because as a girl they would never have picked her up, but hopefully you know what I mean!!) But as you may know Aspergers doesn't exist as a diagnosis any more: I guess it would be ASC Level 1. (Actually I think the DSM still refers to autism as a "disorder" but I refuse to!)
www.autism.org.uk/about/diagnosis/criteria-changes.aspx

There is a good cartoon on functioning labels here: generally most autistic people are not keen on functioning labels as it varies so much by setting and over time (which even the DSM-5 recognises), the risk is a "high functioning" labelled person would not be given the support they actually need, and a "low functioning" labelled person would be held back from doing things they are actually good at:
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

Oh yes I have read about the levels. Yes I would say the same for my DS, he functions well in lots of settings (he's just started independent swimming lessons and is fine), but it seems from the feedback that a play group setting is too overwhelming. There's 20 kids, but when he starts school nursery in September it's classes of 40