ASD/High-functioning autism. Early clues?

[JennieLee]

Can I ask what - looking back - first gave parents a sense their child might not be neurotypical?

Thanks so much.

Looking back.

As a baby he never looked us in the eye, he was always starting over our shoulder. We always joked that there was someone behind us. Also he cried non-stop unless I was walking up and downstairs or jumping with him or holding him upside down (when he was a bit older).

As a toddler, intense meltdowns that I couldn't appease, he would often crawl away from me and hide. Head banging when upset. Repetitive actions and behaviour. Finding really weird things funny.

The thing that prompted us to get him assessed was when he lost all his language at 2.5 years. He was diagnosed with ASD and he also has a sensory processing disorder which explains quite a lot of the sensory seeking behaviour.

I first started to think my ds was autistic at two but looking back there were a few earlier signs before he was one. When he was maybe 8 months he learned to wave. He did it for a weekend and then not again until he was two I think. When he turned one exactly he started refusing to look at the camera for photos and this lasted a good while. As soon as he was mobile he wouldn’t sit with me for groups. He would spend the whole time exploring the room or trying to get out of the door. He just didn’t like group things like rhyme time at the library at all, whereas other kids loved it.

There were other things later on.

Losing his language at 2.5 must have been terrifying for you all. Has he regained it?

With my eldest - when she started primary school, and her teachers raised concerns.

With my youngest - when he was 2 and his childminder raised concerns.

Both times it was difficult for us to see it as parents . Obviously with our second we were on high alert due to our first being autistic, and we did have some concerns about his language development, but it still took the childminder to point out the obvious 🙈

We thought ds was a difficult child!
Premature , didn’t sleep, hard to feed, very advanced adult like speech but very emotionally delayed, meltdowns ++++++++++++, impossible to take anywhere without stress, tears and a general nightmare. We were seeing paediatrics when the consultant said I wonder if he has ASD. We hadn’t thought of it!

Longtallsal to be honest we didn't notice at first. We'd just had dd and were very sleep deprived. One day I just said to dh 'when was the last time you heard ds speak?' And neither of us could remember.
He's now 7 and regained a lot of speech, it started coming back at about 4. Still not in line with his peers but he's very good at getting his point across.

As a toddler she Didn't respond to her name, would only play at nursery if an adult was there, then lost her language at 2, slowly came back and is well spoken now, would throw massive tantrums. As a baby she slept a lot and was very placid. Not sure if this is related ! Nothing much that you would think something is going on, she was assessed by a dr when she lost her Language and I was told I was speaking for her that was why I think if I'd had access to the intranet and information I do not it might have been picked up sooner. As it was she was coping through primary then fell apart in secondary quite quickly.
The signs became more and more obvious as she grew up and is quite obvious when you meet her now (teens).

Feeding problems as a baby

Long periods of being inconsolable and distressed as a baby, used to hold DS in a dark room in a sling whilst bouncing on a therapy ball

Awful sleep

A general uneasy feeling that somehow he was different but had no idea what

Speech delay

Constantly on the go

Toe walking

Intense interests in specific vehicles

And for my daughter:

Dreadful separation anxiety, never seen it so bad in other children

Awful sleep

Intense meltdowns from early on

Restricted eating

Lack of safety awareness and lots of risk taking

Sensory seeking behaviour, licking surfaces, smearing yoghurt over arms, feet, face in rhythmic patterns

Hand flapping

Severe sensory issues from birth, constantly growling, very easily distressed no emotional regularity and intense attachment disorder, he cry the 9 hours in childcare, head banging, lining toys.
It has taken lots of work at 6 he is much better with lots of support.

Different to some of the other experiences here for my son, he's 2.5 now and was diagnosed at 2, we started the process when he was about 20 months.

For us he was just incredibly placid... The most peaceful baby I've ever known. As he got older he never copied or mirrored animal noises or actions. No pointing. Didn't respond to name. Intense obsession with items and no interest in other play. Always laughing to himself and in his own world. Sensory seeking. Incredibly affectionate and needs to have physical contact. Completely disinterested in others except me and his dad. No language at all or any attempt at it.

Oh I forgot highly restrictive diet, it takes him hours to go to sleep, he always stims and spins around constantly

I had no idea and was actually very resistant to the idea, because DD is so like me (so all her autistic traits seemed - indeed are - pretty normal to me). Our nanny picked it up first.

Earliest things that I now link to her autism (though I'll never be sure): very placid baby, very happy and easy to entertain. Great sleeper but terrible feeder (went to various BF support groups who were all a bit clueless how to help). Got there in the end though.

She was a very late walker (and even stander) - hated putting weight through her legs so bum-shuffled everywhere - but was never that motivated to move really. Could entertain herself with whatever was within reach (see comment on easily pleased/easy to entertain above!) I do remember her bum shuffling at speed around the floor of St Pancras station aged around 20 months. She was fast by then!

She was a good talker and started talking pretty early but looking back probably had a bigger weight towards nouns/labelling things. Didn't respond very much to her name. Loved to show us things (joint attention has never really been a problem), but didn't point unless asked ("where's the ....?") and didn't ask for things like toys/drinks/snacks (which was what prompted our nanny to suggest SLT), and together with the Physio support for her late walking that set us on the road to a more general review and eventually her Dx when she was 3.

Later on when she started nursery at 2.5 she presented as "shy" - she was much more comfortable with adults than the other children, and it took a while for her to start to play really with her peers rather than along side. Hid under the table when there was a fire drill. I think Nursery might have picked it up then if we hadn't already been on that path. Great sense of humour. I remember her first nursery teacher (age about 2.5) saying she was the first kid in nursery to start to tell proper "jokes" and always very giggly.

Now she's 7 and doing very well. Has friends, doing well at school etc. But she is in a small class and can get a bit overwhelmed with new things or being the centre of attention (e.g. won't let anybody other than family take her photo). So some things are a bit harder for her but she has a nice life overall.

Very placid baby who would stare into space for long periods of time.
Light-sensitive - would scream blue murder if the sun was in his eyes. Would only sleep if his room was so dark it was like a cave. Developed an obsession with opening and closing doors at the age of 10 months that has remained, albeit in a milder form, to this day.

Poor language development - not just in terms of gaining words but his understanding of spoken language was very weak.

Those are the main ones, more have developed over the years tbh.

Nothing - it was picked up when they went to school (I have two, both HF/Aspies). Looking back, they were hard work. Kept running away, didn't seem to have any fear of not having me with them, although they would give me cuddles and were generally loving (still are!).

Also very light and sound sensitive, both were bad sleepers, I think because of this.

Language development was poor, although they both started speaking (my oldest in whole sentences!) at around age 2. We used ABA to teach them non-verbal communication when they were diagnosed.

Neither potty trained before age 4, although both were fully dry and clean (nights too) by 6.

Both had, and still have, problems with imaginative play, including imagining something to draw, so we've steered them towards the sciences and computers, where they're very happy. Both set for studying science based things at uni when they finish A levels.

In my experience working with families, all children are different. But as others have said, the difficult to settle, feeding/sleeping/toileting issues are common. Also, engagement in social interactions (e.g. even from early on with smiling/following eye gaze).

As a side note, they are also doing research with eye gaze technology as a way to diagnosis children under two years of age, or to at least identify early and get supports in place.

Very placid baby. I thought gosh this is easy compared to my other child. He just sat looking content. Then it was the nature of his tantrums which i now know to be meltdowns. They were never about being told no or wanting things. In hindsight they were sensory issues or changes on plan..

@MildredPuppy can I ask please, what would you describe as a placid baby please ?

I think my son is like this (and has been described as such) but wondering what others internet placid to mean so I know what to look out for further

Interpret * not internet !

@SS1983

He just sort of sat watching the world go by - didnt really make any demands of me. Like in a car he would either sleep or look out the window. Whereas my other child would babble and cry and wriggle around.

@Elephantsparade thank you. My son is like this .. very content in the car, pram or bouncer. Just watches or plays, and usually falls asleep in car or pram. He is 5.5 months but I hear him described as placid , ‘good’ and content more and more which worries me. Earlier I never thought that it would be a worry until i read more and more about it

Ds1 was diagnosed aged 9. I had concerns when he was 3. As a baby he didn't seem that bothered if I was there or not as long as someone was entertaining him. By 8 months he was climbing and into everything. He could take socket covers off by then too. His speech was delayed although he did speak. He walked late (aged 21 months). As he got older he got fixated on routines and obsessed with Thomas the tank engine. Aged 15 he still loves trains and some of the older Thomas books/tv series.

Ds5 was diagnosed aged 6. I had concerns from when he was about 2-3 months old. He had extreme separation anxiety. He was in nicu for 5 days and the nurses used to ask me to come down from postnatal whenever he was awake as he would scream constantly unless I was holding him. Despite wanting to be held by me all the time he was awake he wouldn't look at me and he was 5 months old when he first smiled. Paediatrician did an urgent referral to the eye clinic when he was 4 months as despite her spending a long time cooing, chatting, bouncing him etc he didn't react at all and just stared right through her. He never waved or pointed and was still only just verbal when he started school. He walked late (24 months) although he was climbing a long time before that. Aged 7 he doesn't really have conversations and we have to really encourage him to say a whole sentence instead of just one word requests for things.

With my dd, it was general delayed development. Started saying a few words early on then stopped and nothing until over the age of 3. Always sensory seeking - touching everything, feeling textures. Separation anxiety well beyond what is a normal shy toddler.

I also described DD as placid. In her case it meant that she was happy to sit and play with whatever was within reach. If she couldn't reach a toy she wouldn't cry or try to get to it - she'd just play with something else (even a bit of fluff on the carpet!) I never really thought much of it at the time as it made life easier and she seemed very happy and content! Spent a lot of time leafing through books, even before she could stand/walk.

As she got older, sometimes when she was upset instead of crying she'd just lie on the floor and look at the ceiling. Now I realise she was kind of zoning out when something happened she couldn't deal with. Even now she's older she tends to internalise things rather than have an obvious meltdown.

Ho how’s your son now and his diet ? ☺️

It's still very restricted - he hardly eats anything and doesn't sleep without melatonin. My son would be classed as "severe autism"