Autism in children.. when did you notice and what did you see?

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My son is just over 3, I've had a niggle in the back of my mind now for over a year that he may have something underlying that create difficulties for him. I work in special needs and I'm well aware that some autistic behaviours are also very standard toddler behaviours but the older he gets the more I question whether these are just being a toddler or something else. I'll list some of the things that really stand out although there are far too many to count.
-he is absolutely fixated on dinosaurs, it is his only interest and he talks about or pretends to be a dinosaur all day everyday.
-when meeting new people he won't speak, he roars in response to greetings/questions.
-he cannot cope with change in routine, we come down stairs and he has to have breakfast immediately, cannot wait a minute for it. If anything causes a delay he has a complete meltdown.
-he will only eat certain foods and in a certain order. He has the exact same meals everyday, he won't even attempt to try new things; he has a very limited list of foods and won't even touch something new.
-will only wear joggers/cotton T-shirt's. Cannot deal with denim or shirts with collars: can't cope with rips or tears in clothes.
-constantly asks what's that noise, what's that smell and I can't hear/smell anything.
-hates loud noise, fireworks, drills, bangs cause complete meltdown.
-always needs to know what's happening next. First thing he says every morning is what am I doing today. He'll then check that off throughout the day.
-if we have plans to go somewhere, for example swimming. He'll be so excited, can't wait to get there talk about it non stop but as soon as we stop the car and go to get out his whole attitude/body language changes, he looks scared and gets upset, even if it's something he really does enjoy once we're there.
-if he's been at home all day he's absolutely fine, but evenings after being in nursery all day are horrendous. He breaks down the second we walk in the house and spends most the evening screaming and shouting about every little thing.

Just interested to hear others people's experiences, when did you notice something was different and what was it that you noticed first.

That sounds a lot like my son at 3, right down to the dinosaur obsession. I had the same niggling feeling from about 2 +half, but put off rasing concerns for about a year, as there was always something else it could be (terrible twos, new sibling, nursery move). He was referred to the pediatrician at 3+half and has just been diagnosed as autistic at 5.

In retrospect I should have raised concerns earlier, as everything takes so long to get sorted. We're getting there but he started school this year and we're still working on getting him the right support, whereas if we'd started a year or even 6 months earlier, it might have been in place before he started.

I'd say always trust the niggle, if it's nothing then they'll soon tell you, but if it's something then it's better to catch it as early as possible.

DD2 masked a hell of a lot when younger - it's become more obvious as she got older and things started to become undone - the rigidity of thought, the sensory issues, the social skills not being what you'd be expecting in typical development. Diagnosed age 8 -but only because I was flipping well on it and we went private.

DD1 who I think is heading for a diagnosis - she was more obvious younger - wouldn't play imaginatively with toys - would line all of them up - but was very verbally articulate so no one believed my concerns - but is starting to come undone now (age 9) to the point CAHMS are just beginning to become involved.

Have you done the M-chat test? (If not, you can Google it.) It can't diagnose autism but it can be quite useful in alerting to you to the kind of things to look out for which can indicate a child may be on the spectrum.

As you obviously know working in this area yourself, there's no definitive list of autistic behaviours and every child on the spectrum will present in their own individual way.
As you say, some of those things on your list may be 'just' toddler behaviour. This is why a diagnosis of autism is done by a team of highly trained specialists.

How does your DS communicate with you? Does he point out things of interest to you that he's seen? Does he bring you things to show you?
How does he interact with the other children at nursery? Has his nursery raised any concerns?

When did your Ds learn to speak and how are his language skills now? How does he play? Does he draw you/other children into his play? (These are the kinds of things they will ask you if you pursue a diagnosis.)

I think your list of concerns would be enough to take to a GP to flag up. The wait list for an autism assessment in my area is currently 2-3 years so it can't do any harm to get him on the list now - you can always withdraw him at any point.

I'll look at that test now, thanks.

His communication is excellent, nursery commented on it after his first day and said he's well advanced for his age. But I think he's happy talking to adults, but not so much with other children.

I have a meeting with nursery next week to discuss how he is there. He started 3 months ago and is only just settling, it was really difficult for him to adjust to, he was used to a childminder but the move to a bigger setting seemed to be much harder for him to deal with. He still goes to the childminder too, and even though he's been there 2 years he'll still get upset at drop off. He's so excited to go and really likes her and once I've left he's happy to be there but that handover always upsets him.

I don't see him interact with other children, he'd rather play alone. The photos I have seen from nursery so far he never looks part of the group; if there's a photo of children at a table doing an activity he always seems to be sat on the carpet playing by himself. He likes me to watch him play and will ask me to watch but he doesn't really like it if I try to join in. I don't think he's that imaginative, he appears so, but I know that he's actually just replaying scenes he's seen on tv.

I know the childminder doesn't share my concerns; but I think he masks how he feels outside of home because often the second we walk through the door he will meltdown for absolutely no obvious reason. We could be having a lovely conversation in the car about his day but as soon as we're in the house it's like it all comes out.

He suffers with chronic constipation due to withholding and when he's at the childminders or nursery he doesn't attempt to go and doesn't seem to suffer but as soon as he's home he's upset, crying, rolling round the floor needed to do a poo but just point blank refusing to do it. He knows what's wrong, he knows he needs a poo but he just says it too scary and he wants it to go away. His constipation definitely has a huge impact on his behaviour. The longer we go between poos the worst his behaviour is. But when he decides he doesn't want to do something there is no changing his mind at all. He won't sit on the potty at home, but will happily do it at nursery or childminders. No amount of bribery or gifts will get him on the potty at home.

There is difference between language and social communication, as I'm sure you know. My Ds's vocabulary is off the scale it's so advanced but he has absolutely no ability to play/interact with other children. He will monologue at them about his special interest and then wonder why no one wants to play with him!

My Ds has also always got on much better with adults as they tend to be more patient and less 'demanding'.

It sounds like there's enough concerns there to ask for a referral to either a community paediatrician/CAMHS (depending on which service hold the waitlist in your area). You can go to the GP yourself. If your Ds's nursery has a Senco, they may be able to put in an application/support your's.

I'm assuming your Ds won't be going to primary until the year after next but it's good to get the ball rolling now so that if there ARE any ongoing issues, hopefully support can be put in place. Everything takes a long time I'm afraid, especially since Covid. Wait lists for speech and language can be over a year in some areas I've heard. (Speech and language will also help support social issues too.)

It's great that you are so on the ball.

I took a look at the M-Chat test you mentioned and that highlighted a medium risk/concern (can't remember how it was worded)

I spoke to the GP today about his constipation and eating habits she agrees there must be some underlying behavioural/sensory issues to explore so said she would refer us for early intervention. She agreed that the behaviours are borderline but enough to be explored. However she called back to say she can't do that until he is 5 so suggested I self refer for early help from social care. I've done this but my experience of social care and early help in a professional capacity are not good so I don't hold out much hope of getting much from that.

I also wonder how much lockdowns and restrictions have impacted his ability to communicate with peers his own age. I was shielding during the lockdowns due to being pregnant so he spent much of his second year when he was ready to learn and explore stuck at home with me day in day out.

That doesn't sound very satisfactory really. Especially on the constipation stuff - as you say, if he's uncomfortable it's going to make everything else harder. We went through the same with DD at a similar age and it took a lot of time and patience and a lot of Laxido to get to the other side (prescribed by the paediatrician at one of DD's communication clinic sessions - but before she got her autism Dx). I'm sure another parent on the Laxido journey told me that it takes about twice as long to resolve the issue as it has gone on for - which was about right for us (9 months to a year getting into a mess, 18 months to two years very gradually getting out) - so I'd push that bit at least as more urgent. If the poo thing is sensory and anxiety driven (which seems likely) then making sure everything is comfortable is going to really help, and it's hard to get there with fibre alone even if your DS were a flexible eater. Laxido is good as it's a powder: you can mix it in with juice. And then once things are moving nicely you have to come off it very very very very gradually or everything ceases up again. You can get adult Laxido OTC but the children's sachets (which are half strength) need a prescription.

He does sound quite like DD in other ways. She always shared things with us and had good communication with trusted adults - but tended to prefer to play on her own when surrounded by children. She was interested in other kids but from a distance and was just slower than the other kids to move from "playing alone" to "playing alongside" and then to "playing with". Looking at her Dx report the assessor notes that she goes up to another child's art work after they've left it and says "that's really good" but there's nobody there really to hear it. She is socially motivated but finds other kids just confusing and chaotic I think. She also loved nursery and then school but found transitions/ drop off really really hard. We had quite an elaborate routine going to support that during Reception, which we were then able to taper off as she settled in.

You probably already know this as you have SEN experience, but if you Google your local authority name and "Local Offer" you might find some other resources that would be helpful (and also information on what the diagnostic path is for autism: I find it hard to believe that there is really no possible way to access a Dx before 5). In our area we found drop-in sessions to see SALT and (separately) Physio, and also some parent groups/coffee mornings that we could access without Dx (though I'm not sure I had the confidence to actually turn up until we had Dx - but I should have done! Other local parents are the best resource).

It was actually the Physio that set us on our Dx journey initially (DD was a very late walker - very bendy and not keen to put weight through her legs, which I now thing was also sensory). Then our nanny flagged that she wasn't ever asking for things (despite having a big vocabulary she'd never ask for a drink or snack or for help with a toy or say she was too cold or too hot) - and that got us into SALT. In our area once you're being seen by 2 services you are automatically considered by the complex communication clinic - and that's what eventually led to her Dx when she was about 4 after a few more assessments and "watch and waits" along the way.

@LightTripper he's been on laxitives since 6 weeks old. He currently has 2x movicol daily (same as laxido) and 5ml senna. Then we regularly up this for a clear out to as much as 8 movicol a day. But because of his eating habits it's sometimes hard to get the higher doses in!
The only way to keep him moving is to permanently have him on a high dose so it's runny but then he soils himself often and ends up really sore and that upsets him too. He's done a big poo on his potty twice.. completely randomly and it didn't hurt and he was so happy with himself but he still absolutely refuses to sit on the potty daily.

Sounds fairly similar to mine at that age, though it is surprising how much you forget! In answer to your initial question, I would say I 'knew' my son was autistic from about the age of three, and I suspected 'something' from soon after he turned two.

DS's gross motor skills were delayed and his balance was 'off' compared with the other kids we knew. He taught himself to read very early, and was obsessed with books, letters and words. He was frequently aggressive (mainly to me) between the ages of one and seven. He would bite constantly - me/himself/inanimate objects. We had similar problems with stool withholding, though his stools were always loose. There was a link between aggression and needing a poo. He would never have coped with nursery, so was mainly at home with me. Boy, was it hard work! He is so much easier now.

DS's speech was OK but he didn't address me as 'mama/mam/mum'. He did it once when he was tiny and then never again, eventually started using my name instead. DS came out ok on the M-chat but had a high score later on the childhood autism quotient. He wasn't diagnosed until he was nine, and I had to pay privately in the end.

In hindsight, DS was different from birth, I remember he was crying so much louder than the other babies in hospital. I would raise concerns now, because as PP says, waiting lists are long and you can always withdraw later.

Really appreciate everyone sharing their experiences, helps a lot.

I think it's hard because no one agrees with me but it's the same whenever one of them is ill, sometimes you just get that feeling that something is off and more often than not I'm right. The older he gets the bigger the niggle gets, and I often see things that others don't. Like drop off at the childminder, so happy and excited to go and then a sudden switch in his demeanour and look of fear on his face. It breaks my heart!

Hi, in a similar position here.. my son turned 3 last month and I have had suspicions on and off for probably 1.5 years.. mainly due to speech delay and social interaction, so some of your concerns resonate with mine.

First word at 18 months and only really over the last 6 months has his speech really progressed - he is a lovely chatterbox at home now, but won't speak to people outside me, his Dad and grandparents. His aunts/uncles he will become chatty with after a while, but if we meet friends, see someone we know in the street, meet someone new, and even at nursery - he won't or can't speak and will remain expressionless too. People always say 'oh he's so shy' but I know it's more than that, he is not hiding behind me embarrassed and shy, it is as though he just shuts down. He actively moves away from peers.

His 'obsession' is cars/vehicles, he would happily spend all day lining them up (and is very unhappy if you move one out of position), moving them round and round on the table or watching closely as he moves one back and forth. Over the past year or so he has had other obsessions alongside also - flags, house for sale signs, and now tow bars on cars.

He will constantly hold between 1 and 5 toys or objects in his left hand, meaning he never uses both hands for an activity. At one point it became a hygiene issue as he literally didn't open his hand for days.

He is a good eater in terms of amount, as long as it is the same (limited) foods on repeat. He can be funny eating in front of others.

He is funny about wearing new clothes. Won't wear clothes with holes in. He also will sometimes refuse to take his jumper off even though you can see he's hot.

He is the sweetest, most fun and loving boy, but I'm so worried he is going to go through life misunderstood. His Dad gets a bit defensive if I bring up my concerns, and my Mum always justifies everything, not really believing in all the 'labels'. I think other family members have had similar thoughts. He is under SALT and has recently changed nurseries (which is going better than the previous one) so I plan to speak to the manager next week about it all, and SALT whenever they follow us up.

Hopefully our boys are just finding their ways and developing their own unique and beautiful personalities and characters, but as Mums we can't help but worry, so best to speak up and explore our concerns if we can. Good luck xx

Gosh sorry that was so long, I think I've been needing to get it all out!! 🤣

In ds's red book at six weeks old HV wrote " Mum concerned there is something wrong with baby although baby appears fit and well" I knew he wasn't like my previous babies but had no idea what was wrong. He was very stiff, never snuggled in and always looked for lights. He was dx'd at 2 years 6 months.
With dd I suspected at 4 months when in an hour's photoshoot the only time she smiled was at a tigger teddy. I was convinced at her eight month check when she sat silent and motionless when all the other babies there were interacting with their Mums. I knew at twelve months when she suddenly lost all her skills over the course of a few days. She was dx'd the week of her second birthday.