If your child has Aspergers or 'borderline' Autism...

[MaybeAspie]

...What were they like aged 3?

Regular who has NC to protect identity. Apologies, this may be long!

DS is 2.11, has been at preschool since September.

Last week, the leader of his preschool wanted a chat with me at pick up time, as she wanted to know what the HV had said when he had a revised 2 year check. (Background- at DS' original 2 year check, it was flagged up that he was potentially gifted with numbers, I will explain more about this shortly, but the HV was happy with every other aspect of his check. Because of a mistake, this check wasn't noted, and he had to have another one in November, and again, different HV was happy with everything. When DS started preschool, I mentioned the potentially gifted with numbers thing as per the HV advice, and they said they would monitor him and see what they thought.)

I asked why she wanted to know, and she said that they (her and DS' key worker) were starting to wonder if he was 'borderline' AS/ASD. The leader has 30 years SN experience, so I do trust her judgement up until a point. Ds' keyworker is also fab, and I am very happy with the preschool in general.

They are coming to this conclusion because:

• DS apparently won't make eye contact easily unless he wants something from them, or unless you are on his 'wavelength' i.e. playing a game/activity that he wants to play with.

• He will be having a conversation with them, about anything, and then often suddenly ask them something random to do with his passion (trains) i.e. "what station comes after X", almost as if he hasn't been listening to what they are saying. He does this at home a bit, but most of the time have very 'normal' conversations too.

-If he is zoned into an activity, he is very hard to engage with.

• His ability with numbers is very advanced, although they say he is extremely bright and advanced in all areas, easily holding his own with the eldest children there. His language skills and use of them are a lot older than his age.

• A HUGE interest, almost obsession, with transport- trains, trams, and stations. Has been able to read all bus numbers near us since before turning 2, and can tell you where they go to, in both directions. Can name all the train stations, in order, on our different local routes, going in both directions. Has a huge knowledge of The Tube! As preschool have said, and we have noticed, he will randomly start talking about trains/trams at totally non-relevant times.

When he was younger, he was also obsessed with anything that spins (a sign, I know), and as an older baby would spin something on his Jumperoo for AGES, and would stare at windmills, fans for a while, but not long enough that I would worry IYSWIM? As a younger toddler, he would walk around spinning his cloth with one hand, but hasn't done this for the last year or so.

BUT, apart from these points, everything else about him is what I, and they, would deem 'normal', which is why i'm confused:

• Has real interest in other children, and I know that when he's with children 1-2-1, loves playing with them, and making up games. Tends to seek out older children who can talk to him though, not so interested in children same age at the moment, but will play lots with his little sister (20 months).

• DOES make good eye contact, smiles, laughter, especially if not in busy environment. I find it harder to hold his attention in a busy place, and have noticed the eye contact thing more since they highlighted it last week.

• Very social chatting to older children and adults especially, apparently has very grown up language according to his key worker. When we're out and about, he loves to talk to everyone and anyone.

• Loves all sorts of activities, not just things related to transport - playdoh, drawing, water play, sand play, role play, puzzles, books, Peppa, his teddy, playing football with Daddy. His imagination is amazing, and this week alone has set up a 'toy shop' without prompting using an old box, made a 'little house' with his younger sister, pretended he was running a cake shop. So lots of role play. Some of which is centered around pretending to drive a train, lots isn't!

• Shows empathy, and 'gets' facial expressions. If i've got cross with him, or giving him a 'look' when he's being naughty, he can tell, and will ask if i'm 'happy now'. If a character in a book looks sad, he's told me so, and asked me why they're sad, unprompted.

• Loves cuddles, very tactile.

• 'Got' potty training at 2.1 and was totally dry within 2 days.

• Totally fine to changes in routine, happy to go away, sleep somewhere else. Not disruptive at all, but has always been very demanding of our time, and wants us to play with him and to talk to him CONSTANTLY which is quite wearing!

I've done that M-Chat test for him, and he comes up as very low risk.

BUT he really does have a transport obsession, and I can't decide if it's normal for a nearly 3 year old to talk about what they love (they're not going to talk about the news are they?!), or whether it's something more. He was a very early talker, so might explain why he sounds older than his age. He repeats lots of questions though, even if i've given him an answer, sometimes as if he hasn't listened, which is frustrating. But again, is this just being a 2/3 year old? And the numbers, bus numbers, and train routes thing has raised quite a lot of eyebrows with people who can't believe what they're hearing.

The preschool leader says they'll monitor him until end of Feb and then have a further chat with us. She seemed surprised when I said about all the role play he does at home, which makes me think they're not seeing entirely what we see.

I'm not in denial, and a few things ring alarm bells, but so many things don't. Could he be just ahead of his peers in some ways but immature still i.e. acting his true age in others.

I've just felt quite upset since and don't know where to go from here. I'm also wrongly analysing everything he does now, and I don't want it to ruin the enjoyment of my fabulous little boy.

Sorry that was so long, I just wanted to know if the description of DS rang true with anyone else's past experiences, or if people could let me know what their child was like aged about 3 if they have ASD/AS, or alternatively turned out 'gifted'.

Feeling a bit lost

Apologies if I don't get back straight away, am out for the afternoon but will be back this evening!

Well my 3.2yo is currently being assessed and, while they share a passion (trains), your DS sounds far more advanced in his social skills, language and imaginative play. I have to say if they were side by side I wouldn't worry about yours at all. When you say his language is very advanced, does he understand what he's talking about? One of the concerns about my DS is that he will sometimes use quite sophisticated language (like "works of art"), but these are things he has learnt from favourite programmes and books rather than spontaneous language use. He also learns books by rote easily.

As part of their observations, nursery will give you a chance to complete the picture by telling them about behaviours you see in other contexts. Sometimes they may just not have seen the behaviour, but other times the context itself may be quite telling - eg my DS has good interaction and eye contact at home but poor at nursery. This is useful context and concerning. Less concerning is the fact that they've only seen him identify the letter 'D' at nursery, whereas I know he can identify the whole alphabet at home. That's just filling in a gap (if that makes sense?).

Anyway, I'm not an expert as we're very much at the beginning of our journey. Just thought you might like to hear from a mother of a similar aged boy. No harm in letting nursery observe.

My DS1 had an initial diagnosis of Aspergers and he sounds very similar to your DS, except that my DS wasn't very gifted with numbers. I think the label of DCD/dyspraxia fits him better but it took years for opinions to slide that way but certainly back in the early days his pre-school also picked up on the AS when the HV just said he seemed a happy bright boy. He is both of those things but there were other things going on too. We only got listened to by the HV when we moved back to where DS was born when he was 4 and his new HV did an observation of him at his new playgroup. She then referred his to the GP who referred him on the paediatrician. I think it is the case that children behave differently in different situations so just because your DS is OK at home where he is comfortable, it maybe that when slightly outside his comfort zone, like at nursery, where there is a lot of noise and activity he might show traits that aren't obvious to you.

I would just say that it took 18 mths to get a diagnosis and although some of that is the overloaded NHS, it is also the case that because he was borderline they didn't want to jump to conclusions and put a label on him for something that could be developmental.

If I were you, I think I would go to the GP, tell them your concerns and that the nursery have picked up on it too without any discussion with you (i.e. they weren't looking for it because of concerns you had) and see if they will refer you on to the paediatrician from there. Don't be surprised if you get fobbed off though, as he is so young and be prepared to go back again in a year or so.

Good luck.

My two with ASD were very different to each other at age 3.

Ds1 was much more obviously on the spectrum, and it was no surprise to anyone when he was diagnosed a few months later. He had no interest in other children, had very little language, lots of sensory issues, and no interest in toys or games. At the same time he was very bright, was able to read complicated words at 2yrs ( possible hyperlexia) and was good with numbers.

Ds2 had already been diagnosed by that age, but it took a while to work out whether he was 'different' because he was so bright, or whether he'd been using his intelligence to mask some of his ASD.

Ds2 was interested in the other children at pre school and keen to play. He had some issues with language but once it 'clicked' he sounded very much like an eccentric professor. He had his own particular interest at that age, which he talked about a lot.

He would flit from one activity to another but could spend hours concentrating on an activity he enjoyed. (His paediatrician described this as "hyper-focus").

He was very creative and imaginative, but his play could be very repetitive. Once he'd worked out what he wanted to do with a particular toy, he would repeat that sequence of play over and over.

One thing that struck me from your post was the comment that although he's not interested in playing with children of his own age, he plays a lot with his younger sister. I found that ds2 was happiest when playing with younger children who were happy to be directed and led. The problems started when he played with children of his own age, who were more likely to have their own ideas about what they wanted to do!

Ds1 is now in his teens and described by his teachers as "extremely able". Ds2 later had IQ testing as part of an assessment and turned out to be very bright too.

If I had to do a direct comparison I would say that your ds sounded a bit like my ds2 in some ways, but doesn't seem to have the difficult behaviours and sensory issues that ds2 had.

I must admit that when I read the staff concerns about eye contact and conversation, my immediate reaction was "But he's not even 3 yet!".

I'm not sure that I would be all that concerned about the transport interest. I remember a MN'er on the SN board a few years ago made the observation that people think that a child who knows lots of facts and figures about a non-mainstream topic is considered 'odd', but if they have the same level of knowledge about football it is seen as a positive thing and something to be encouraged!

Whatever the answer, your ds sounds like a fantastic little boy.

Thank you so much Womnaleplus , BigBoobedBertha and Coppertop for getting back to me - your posts have been very helpful.

Womna - DS' language use is in context most of the time, so he does seem to have an understanding of what he's saying. He just sounds almost oddly grown up! For example, if you ask him if he wants to do something, at the moment, instead of just saying "yes", he'll say "I do indeed"(!) It's very sweet and charming, but now thinking about it, is that quite odd? I'm now probably totally over-thinking things, but hmmmm...

DS also learns books by rote easily, can 'read' me a whole book and turn the pages at the right time, without actually reading it IYSWIM? It's also interesting that you say your DS has good eye contact at home, but not at nursery, same here we're discovering.

How did you go about getting your DS assessed? Has this come about because of your 'gut feeling' or did a nursery/preschool suggest one?

BigBoobed - I think I will go to our GP once preschool have reviewed him end of Feb, depending on what they say. I too am wary of 'labelling' him so young, but at the same time would like to know if there is anything to be 'worried' about. I guess that although two different HVs have said he seems 'fine', and also a happy little boy who is potentially gifted with numbers, I trust preschool more as they see him 3 times a week.

Coppertop - This sentence of yours rang quite true for me

"He was very creative and imaginative, but his play could be very repetitive. Once he'd worked out what he wanted to do with a particular toy, he would repeat that sequence of play over and over".

DS will play with lots of different toys, but will do the same things with trains over and over, and also will become absorbed in his 'train' games i.e. will make a 'long train' out of Megabloks and push it around the floor for AGES, often in a world of his own, and with his head on the floor looking very closely at his train. He will snap out of this though, and then want you to play with the 'long train' with him, or help build another one. He frequently makes even the most obscure objects into a train- a swimming noodle, a wooden toy watermelon He loves swimming, but last week, I was watching him at his lesson, and he was pushing the noodle around like a train, telling his teacher it was 'the Charing Cross Train', and seemed in his own world (when he wasn't chuntering on to the other children or his teacher!). He would do his width/what he needed to do perfectly and was enjoying it, then at the other end would slip into his world of noodle trains! I took this as him just being younger than the other children (who are all 3 and 4), but now not so sure...

DS is really tall for his age (99 centile) so I often wonder if we/others expect a lot more from him.

I'm just finding this possibility of him having AS/ASD hard to process. I think more so because DP and I are both really outgoing social animals, who both had a great time at school and uni socially, and now both our jobs rely on communicating and interacting well with people (sales and PR!), so this is quite unexpected and i'm worried I won't 'get' my baby boy. I feel so worried that he won't make friends when he goes to school, or will be the 'odd' one. The thought of him being sad, not interacting well with his peers, and not understanding why he is different breaks my heart.

I know it's far too early to think like this really, but I can't help it.

Positive stories of AS would really help me right now!

There could well be an element of expecting him to be 'older' than he is. My 3yr-old dd (who so far doesn't seem to have ASD) is also very tall and with good language skills etc. Sometimes I forget that she's only 3, and it takes something like a tantrum (hers!) to remind me.

If the preschool plan to monitor your ds until the end of February, it might be worth keeping a diary of what happens at home during that same period. It will give you a clearer picture of what (if anything) is happening, and something to show the preschool leader during your talk with them.

If they still think that there might be an issue, you could ask for a referral for an assessment and use your diary and the preschool's report as evidence for the GP and Paediatrician.

Equally it may be that they will have had more chance to get to know him by then and will have observed some of the things at preschool that you already see at home.

My now 10 year old was advanced in language at 2, and no one saw anything to cause concern at 2/3. Issues only occurred as she gradually seemed to act "younger" than her age as she got older. Also her behaviour was out of sync with her language.

I would talk to a GP, because even if a nursery is wrong once they have put a worry in your mind it is best to get it checked (nursery once thought my eldest was epileptic, he isn't).

Heh heh. My DS enjoys doing train announcements, the best one we've had is along the the lines of, "the train now approaching platform 2 is the delayed blah blah blah"...excellent insight into the British train system! Your DS sounds like a hoot :).

In the example you gave above - does he vary the answers he gives, or does he always say "I do indeed"? Because my understanding is that the latter is more concerning. We have this with DS - contextually the right phrase used, but then he doesn't seem to be able to vary his answer.

In our case, I raised concerns about a couple of habits he has (running alongside fences while looking sideways at them, and spinning his arm round and round in front of his eyes - both activities are apparently "being a train"). Nursery observed and then said actually, their concerns were more around language use and interaction with peers.

I understand totally how you're feeling. I feel gutted, confused, apprehensive and like I've failed him big time. A couple of times I've wished I never made the choice to become a parent, even though he's fabulous and I love him to bits :(.

To be honest you could have described my son. I dismissed the signs as such a cuddly emotional child couldn't possibly be on the spectrum.

But he is & is currently undergoing assessment.

Can I just say, that from my point of view, about 10 years further down the line from you, that although it was scary and sad and worrying and so many other things, he is still your little boy. He hasn't changed. He is still the same amazing child he always was. I think when going through the assessment process it is too easy to focus on the negative but for the sake my DS and me, I did a list of the things he was good at as well as the things that caused concern. I did it for two reasons really - firstly, so that he wasn't just a problem to be solved but a whole rounded human being with good points and bad but also because strengths can also be an indicator of issues just as much as weaknesses. Mainly though it was so that I didn't forget DS was the same boy.

Anyway, although DS has no real friends now, he isn't worried about that. He works well enough with others when he has to and then does his own thing. I have been worried about this but he is perfectly happy (although he has been playing on-line FIFA on the Playstation with a boy from school in the last couple of days - the first really sociable stuff he has done since the beginning of the juniors. Yay!! ) He is close to the rest of the family, works hard at school, gets glowing reports for effort and is generally OK. It isn't necessarily a huge problem to get a diagnosis especially if you get good schools which we have been very fortunate with - they 'get' him - and you just accept that although he isn't your average child, it isn't the end of the world. I do appreciate my DS is very much at the mild end of the spectrum but he is most definitely different but it is OK. I hope he goes on being quirky but happy. That would be enough for me. I admit I don't always 'get' him but then I don't always get DS2 either, who isn't on the spectrum, just because he is a 10 year old boy and I'm not.

I'm not saying it will necessarily all be planning sailing, because it isn't, but it isn't necessarily as awful as you might think when you first realise that there might be a problem. I wish all of you going through assessments good luck.

Womna - Oh yes, we have train announcement too, including delays! He does say other things in response, not just 'I do indeed', but this seems to be the favoured response at the moment.

Thanks for understanding. Even though it's early stages and we're not even close to having an official assessment yet, it still really upsets me. I think my gut knows something isn't 100% 'normal', yet 95% IYSWIM? As I said in my OP, the preschool leader has 30 years SN experience, so I really do trust her judgement on this, and the fact she is saying she believes 'borderline' and that we'll have to wait and see does make me believe they are on to something.

I just find it hard to reconcile the little boy at home with the one at preschool, although since i've hung around a bit more at the beginning (they like us to do this) I do see DS a bit differently. At 'home' he is very outgoing, bossy, loves imaginative games, and very chatty and playful with his little friends he's known for ages, and very chatty to strangers/adults. At preschool he appears to not really play with anyone, not join in anything crafty unless directed (we do quite a bit at home though), and just be alone a lot more than I would have expected him to want to be. This morning when I dropped him off, I gently encouraged him to play at a table with a load of zoo animals on, where about half a dozen other little ones were playing, and chatting to each other, and he didn't want to know, just sort of slunk off and found a car to play with alone. I probably am over-thinking things though.

Pictures - how old is your DS, and what is he like and what were your 'signs'?

Bertha - thank you for your lovely post. A list is a great thing to do. I guess my main worry would be him being deeply unhappy in life, not so much having loads of friends. He he had no friends but was not unhappy about it, I could deal with that IYSWIM? We'll see. What's positive is that he really appears to enjoy another child's company more one on one and loves playing with them. Maybe he just doesn't like big groups of older children, I guess not everyone likes being in big groups of people! He's fab and very funny, and I need to remember this!

Forgive me for asking this if too nosy, but do you see your son with a partner in the future, or having other meaningful relationships outside of family? It's more I (perhaps selfishly) would like DS to have someone to love/love him as an adult.

Hi Maybe, you're not being nosy at all. I think it is something that everybody who is faced with a potentially life changing diagnosis wonders.

To be honest though, I really don't know. I think he could have a happy relationship but I wonder how he is going to meet this special person who understands that he might not be as tuned into the relationship as she might be (assuming he doesn't meet somebody with a similar condition). He would need to be open to interest from women and I reckon it would completely pass him by if somebody fancied him! However, he is 13 and emotionally quite a young 13 so who know what the next 10 yrs will bring.

DS is a pretty quiet, unassuming and 'live and let live' kind of person so long as he knows when he will be fed and what is expected of him and nobody springs unpleasant surprises on him. My main worry for him is that he will be bullied for being different. I think he has managed to avoid it so far but I don't like to count my chickens. I would hate him to be stuck in a job or relationship where people were unkind to him and treated him badly. I don't think he could handle that but apart from that I am hopeful that he will lead a 'normal' life in his own way.

DS has a diagnosis of high functioning autism.

He had very little language at that age, wasn't potty trained, was obsessed with spinning things, or things with motors, wanted to socialise but didn't know how to, couldn't (and never was able to) do imaginary play, highly anxious about the weirdest things, yet unafraid of other things that would normally scare young children, lots of rituals and repetitive behaviours.

Language developed very quickly just before starting school, and whilst he struggled a lot at Primary, he is doing ok, not high flying, but making good progress at a m/s Secondary.

Positive stories - he is 15yo, polite, generous, popular, geeky, funny, wide range of interests and diverse group of friends - a lot of them adults.

Re adult relationships, DS is unlikely to leave home to live an independent young single man's life, I would imagine - and I realise that this makes me sound like an awful future MIL - that he will pass from our care into the care of a partner similar to him and they will take care of one another living a gentle quiet life together with a bit of interference support and guidance from us.

Ah resting, your description sounds so much like my DS it's made me feel a little emotional. He sounds like a great young man

My DS seemed entirely neurotypical at 3. No developmental concerns whatsoever. He was diagnosed at 13.

@MaybeAspie I know this is an old thread but just wondered please how things turned out for your DS? Did he get a diagnosis? Am reading through old threads whilst waiting for my DS to have his assessment (it will be months). TIA

Hi @mapland I'm waiting for my DS to be assessed too, we've just found out our referral to early help has been successful after preschool raised concerns about his language use and interaction skills. He's our only child and we always thought he was highly strung and a bit quirky but once the preschool spoke to us, we had a bit of a lightbulb moment! Changes in routine cause huge amounts of upset, several sensory processing issues, and social anxiety at preschool. Yet he is also so funny, has a great sense of humour, kind, cuddly if he's in the mood, and intelligent. It's so hard, isn't it?! He was a late talker but now chatters away, although on his own terms!

@LottieBalloo Hi, sorry I missed your post! How are things with your DS? My DS has his assessment coming up in a few weeks.

I’m not sure if this helps, or irritates but when we were having real problems with DS I was baffled by the idea that it might be ASD. My boss said some really useful things (from the view point of a professional and personal experience)

1 - there are as many different kinds of autism as there are kids/adults who are autistic.**
2 - many kids with Austism are very loving, want to a connection, but don’t necessarily want the same kinds of affection as everyone else. Ie they may find touch difficult, but that doesn’t mean they don’t want to be loved.

I’ve found both these really useful.

**Btw, not sure what the general consensus is in the UK/ on the SEN board here about “being Aspie” or “having autism”, but DS and his friends refer to them as “being” both, so that’s how I have learned to do it. They see it as part of their character/make up like “being English”, and a cool/different wiring thing rather than a difficulty that they have to put up with. HTMS.