Would this be enough for assessment?

[MrsRathbone]

My DS is 5. He’s a happy boisterous little boy. Very funny, bright and caring. However he has a couple of signs that he may not be entirely NT. He runs back and forth and jumps when excited. He quite often repeats words/phrases under his breath. He is very interested in planes and trains. He didn’t play with toys typically as a small toddler although he mostly does now. He was late to point and he had a slight speech delay but now he doesn’t stop talking. He has friends albeit he tends to enjoy one on one play best. He is in mainstream school, doing very well and certainly progressing. Nothing else stands out as ND about him. He eats and sleeps well, he’s very kind, caring and enjoys playing with his friends. No obvious social difficulties, no problems with routine or repetitive behaviors, no sensory issues. Always makes good eye contact. Worth pursuing a referral or am I just an anxious first time mum? My gut is telling me he is NT but perhaps with a few autistic type traits but what do other people think?

Does anyone have any advice please? Would be really helpful to hear from people that have been through it. Thank you

Well certainly for autism to be diagnosed, the symptoms have to be such that they impair everyday life, which doesn’t seem
to be the case with your ds at present since he’s doing well at school and at home. On that basis I think you’d find it difficult to get a referral. Have school ever raised any concerns?

I’m not an expert though, just a parent.

He really doesn't show any signs of autism (jumping when excited isn't a repetitive behaviour, lots of kids like planes and trains). Beyond a gut feeling that he's somehow different, is there anything that's prompted you to seek a diagnosis?

Autism isn't a series of quirks: diagnostically, it has to affect day to day functioning. Most parents press for diagnosis either because their child misses milestones and doesn't catch up, or because their child is visibily struggling with or desperately unhappy in environments other children cope in without a second thought. None of this is true for your son now.

@openupmyeagereyes thanks for taking the time to reply, I appreciate it. Yes this is what I suspected. He is doing well on the whole and school haven’t raised any concerns other than that he needs a bit of encouragement with his fine motor skills as his handwriting isn’t great, but he tries really hard and is very resilient and engages well apparently. He’s doing well at phonics, maths, reading etc and he’s making friends and playing appropriately although he does have one friend that he seems particularly close to. On that basis I’d say School have no concerns other than a few minor things that tend to crop up with lots of children. Is it possible to be just a bit autistic, or just to display autistic traits, without actually being autistic?

Many autistic traits are just human traits that are often magnified or continue when a NT may have grown out of them, so yes it’s possible to have some traits.

I would just keep an eye on things and if he gets to a point that he’s struggling, either at home or at school, then speak to the SENCO.

@BusMumsHoliday thanks very much for your reply. Apologies if I’m asking stupid questions or if I’m coming across as ignorant, I don’t know lots and lots about Neurodiversity but I’m trying to educate myself. It’s more the running up and down and jumping and the whispering, he does it a lot if he’s had a particularly exciting or stimulating day. I don’t think it’s a stim as I can talk to him and interact with him and he’ll stop if I ask him what he’s doing. He doesn’t get distressed when stopping either but he does seem to feel the need to do it as if it’s helping him to process/manage something. Does that make sense? Could it be a stim or just a normal 5 year old ‘thing’? The trains and planes thing, yes it can be normal but he likes reading lots of factual books albeit kids ones and watching YouTube videos of trains and planes - is this typical of some NT kids as well?

He’s certainly not desperately unhappy or struggling, either at home or school - quite the opposite I’d say. He really enjoys school, certainly at the moment anyway. I suppose I’m a little concerned that he seems to be focused on one friend and sometimes pushes other kids away (not literally) when the two of them are together. He is also not that bothered about seeking out playmates when we go to the park /softplay etc but he’s always happy to play with other children on playdate or at parties etc, but does sometimes needs a bit of encouragement to join in. Again is this just normal 5 year old behaviour or could it be interpreted as social difficulties? I don’t want to label a child who can be shy at times in social settings as ND if he is literally just lacking a bit of confidence.

I was worried he might have autism when he was a toddler as he was late to speak/point etc and wasn’t great at imaginative play but that all resolved itself by the time he was probably 2.5 and he hasn’t stopped talking since and has a very vivid imagination these days. I had very bad untreated PND at the time which I think made me obsess and worry way more than I should have done and I’m reluctant to go down that road again unless I have to. I’m currently experiencing some mental health struggles again and I’m wondering if that’s what’s triggering my worries again. Sorry if this has been a bit of a rambling read

It's absolutely typical for children - indeed, people - to need seek particular sensory inputs to manage stimulating environments or their own emotional responses. Think about all the adults who go for a run after a stressful day at work. It becomes problematic when its interfering with day to day functioning, or becoming dangerous e.g. children who can't sit in a chair for a meal because they need the input of movement, or who crash into things so hard and persistently that they might injure themselves. Or, if the need to seek sensory inputs or perform the repetitive behaviour e.g. interferes with listening at school. I bet if you watch your son's classmates at a party, or after school, you'll see them doing similar things.

If he's reading fact books about trains and planes made for children, then that's a pretty good sign his interest is typical - he's enjoying media that publishers have thought enough children will be interested in that they've bothered to make them. Giving my own child as an example - my DS4, probably ASD, likes buses. Which would be totally normal for a 4 year old, except that he memorizes number/route pairings, seems to get a great calmness from doing this, as a younger child was distressed when we couldn't tell him this information about buses we saw. We went to a new soft play in a different area the other day and honestly, he seemed most excited about the different bus routes we saw on the way. That intensity and focus make the interest atypical. And even if your son was memorizing model numbers and details of different planes, it wouldn't be concerning without the problems in social communication that are absent from your description altogether.

I think your instinct that this is something your mental health has latched onto is probably a good one. I hope you're seeking treatment for yourself.

@BusMumsHoliday thanks for your very reassuring and informative post, it’s really helped to clarify in my head some of the uncertainty I’ve been feeling. As I said, I don’t know enough about autism or Neurodiversity to know exactly what constitutes an atypical interest so it’s really helped to know that my son is probably just enjoying learning about those things. I wouldn’t say he has ever engaged with anything planes or trains to the extent your DS has about buses. Not that I would mind necessarily if he did, but that does make it a bit clearer to me that his interest is probably typical. I do think my mental health struggle is probably the underlying culprit behind my concerns but of course I didn’t want to dismiss anything out of hand and risk it being missed or overlooked. I am waiting for some CBT so I hope that will be helpful for me to overcome some of my anxiety and other difficulties. Thanks again for taking the time to post

I'm not sure, the speech might be an indication.

My DS is currently awaiting assessment.

Our suspicions were raised mostly due to speech patterns. He would whisper repeat the end of his own phrases and those by others. He would also 'stutter' by repeating the final sound of words. So we watched and waited.

Then other things became an issue. Control problems, need to know what's happening, general anxiety, meltdowns.

He's 5 now, I'd say we didn't really have any suspicions until a year ago. E.g. he used to be fine with sounds but now he's very distressed by hand dryers etc.

As I say, the speech was the first symptom we spotted. With this alone I wouldn't have been concerned or asked for referral. Now his quirks do impact on the family in terms of planning and adjusting to suit his needs. We're still not sure whether he will get a diagnosis or not but wanted to get on the increasingly long waiting list.

@SpinningTops That’s interesting, that’s pretty much what my DS does, although he doesn’t do the stuttering thing. I’ve actually recently noticed that I do it too at times and I think I always have when I really think about it. It’s usually when I’m thinking about something in my head and I realise I’m muttering out loud. He also whispers to himself when he’s got something running through his head, for example, like he’s imagining a scene and he’s playing a character. Probably not describing it very well but I hope you see what I mean. He doesn’t seem to be bothered by noise (he makes enough of it) or control although he is at an age where he likes to tell his DS what to do. I guess only time will tell but the not knowing is hard. I wouldn’t say our family life is affected by his little ways, at least not yet. We don’t have to change or alter anything else we would otherwise do, for him and with him, and he is very resilient to change and transition. I definitely don’t think he’s unhappy which is why I’m reluctant to rock the boat unless it’s obvious that I need to

Does echolalia at this age always mean autism? It’s not something he does all day every day, it appears to me that he repeats things if they are unfamiliar or particularly interesting to him, not run of the mill things like ‘get your shoes on’ or ‘do you want a drink’. His back and forth conversation is by and large very normal and typical for any 5 year old. He finds it funny when I ask him why he does it and he said he doesn’t do it at school (they’ve never mentioned it either). I’m worried about this now

Sorry just to add that I’ve never told him not to do it at school, or not to do full stop. I’ve only ever asked him why he does it. He’s absolutely fine in social back and forth conversation with both children and adults and I’ve never heard him do it in those circumstances, he only seems to do at home when he’s with people he knows really well.

No single sign "always means autism". It's a complex, often multi-disciplinary diagnosis.

I don't think what you're describing is echolalia. It's a child enjoying an interesting sounding phrase or piece of information - a kind of play. Young children don't really have a fully developed interior monologue - they often process out loud (as do some adults).

Not an expert, but understanding is that echolalia is a diagnostic feature when it's either a repetitive behaviour (that impacts on daily functioning) or evidence of problems with understanding communication and/or language (eg substituing a repeated phrase that might not immediately make sense to the listener for an expected spontaneous response).

I think you need to let this go until your mental health is a better place.

I'd make a note of all the things you mention, and anything else you notice, then wait and see. If things get more severe/difficult for him then you will have a record of him at this age, which they will ask about should you get him assessed earlier. For now I'd just keep an eye and see how he gets on.

Given your update I would say that things sound pretty typical for him. It sounds like he is happy and I very much doubt you would be accepted to the waiting list for diagnosis based only on the examples given. I think it might be that you are reading into things that might be traits when combined with other things but alone are just normal child behaviour.
I agree that children do repeat things for processing and that is very normal, for example, whispering to themselves as they do a jigsaw about how to do it, speaking aloud about how to solve a puzzle.
My son's repetitions started off as frequent whisper repetitions of end of sentences. E.g. shall we go to the park (to the park), I think it will be fun to go on the slide (on the slide).

Thanks everyone for your advice. It seems like I have got myself in rather a state about all of this. As most of you have said, he has some traits that can potentially be attributed to autism however considering the bigger picture, it does seem more likely that those traits in isolation and without the other characteristics that would form the basis of an autism diagnosis, it’s likely just be just his typical 5 year old behaviours. My family and my husband don’t see it at all, they are convinced that I’m just reading into things that simply aren’t there and not enjoying him enough. I think they are probably right. I suppose that’s the danger of reading about things on the internet, you can make anything fit a diagnosis if you look hard enough. That said, I will of course continue to monitor the situation and if things change then I will seek an opinion about whether a referral is necessary. I guess what I’m saying is that if no one is telling us there is a problem, and that he seems happy and is progressing academically and socially, then I need to park it.

Personally, I don't think it sounds like your DS is showing any signs of autism or anything else to be concerned about. However, if you're worried then speak to your GP about it.
If your GP feels there are some investigations to be done then it's best to get the ball rolling asap as the waits are very long.

Sorry, I haven't read through all posts (need to run)!

Just want to say, like others have pointed out:

The more you know about ND, the more you realise it's not "one" thing or "a few". That's why they call them "spectrums".

When my older one was diagnosed eventually at age 10, I was both worried and surprised to spot wordings like "traits within ASD spectrum". But gradually I realised there's always a bit overlap, because it's just how the brain is structured! I'm certainly not ASD but ADHD, but I think I do have some ASD traits myself and surprisingly my mum! Just a small fraction of it - you can name it as "the quirks" if not thinking too deeply.

I'm saying all these don't mean your child is ND, but I mean if you see how the brain is connected by different parts and elements, with billions of people, certainly one is different from the other. So it wouldn't be strange or unusual you find some so-called ASD traits are mildly presented in NT people. But the brains of NT people are "typical" enough to not hinder their developmental milestones or their normal pursuit of ordinary life - which ND children can't easily do without great help because their brains are sufficiently different making them not able to meet the "normal society standards".

Oh dear, I've been too wordy. But that's how I understand it.

Just googled it, first came up is this:

"We have shown that even in a non-referred, non-clinical population, participants with greater levels of autism-spectrum traits—which exist on a continuum even in neurotypical individuals—appear to show reduced grounding in motor experience of object-concept representations.25 Jul 2022

www.ncbi.nlm.nih.gov › pmc
Autism-spectrum traits in neurotypicals predict the embodiment of manipulation"

Just keep an eye, and if there are more symptoms show up, you reassess the situation. But from what you said, especially he's doing really well in school socially and academically, I don't think you need to worry. All kids are different and 5 years old is still very young.