If your DC was later diagnosed autistic…

[Ponderingthemeaningoflife]

…did they point as babies/toddlers, and play peekaboo? I find those questions so strange on the questionnaire (DC referred for assessment). DC did both but that doesn’t mean they are not autistic!

According to that AQ thing both DH and I have Asperger's 🤔

Yes. Both pointed and played peekaboo.
Two children diagnosed with autism. Its very obvious they have autism. Both talked early too. Struggled hugely with social interactions and friendships.

Dd1 didn’t point, or wave. She couldn’t follow a point either. I think she played peekaboo, but not until an older toddler I don’t think (she’s 19 now, it’s hard to remember!) She was diagnosed with severe autism and learning difficulties at 2.5 years old.

dd2 pointed and waved, followed a point, played peekaboo. She lapped up all the intensive interaction stuff we were doing with dd1. Dd2 was diagnosed with Asperger’s when she was 7.

ds pointed and waved. Played peekaboo. Textbook development, really, except he had slightly delayed speech. He was diagnosed with moderate ASD at 3.5.

Yes he did. Not officially he a DX yet, but has an appointment next week and had several health professionals say they think he is on the spectrum.

It’s just a screen (like the CHAT - which includes the pointing stuff). If it rings a bell and a dx would be helpful can be useful to support requests for further assessment. But it’s not diagnostic.

Pointed but maybe not as much as most. Stopped pointing around 18-20months after regression. Loved peekaboo until regression, no interest now (3yo). Generally shared attention is a challenge.

This also sounds just like my DS. He’s always made eye contact, but when he was assessed they told us afterwards that it was forced at times and not always “appropriate” (ie, sometimes he’d stare right into your soul, then completely avoid when he got uncomfortable. They said it was as if he’d learned eye contact is a thing and was trying to copy us all).

He’s social to the extreme - everywhere we go he ends up attaching himself to another family and makes himself a new friend.

Sorry should have said, that was my earlier point about pointing being a really good screen for autism. It does pick up a whole bunch of kids early - including those like my son who couldn’t access the AQ as a screen.

I have 3…

Eldest still struggles with pointing now.

Second- no issues with pointing.

Third- doesn’t understand pointing at all.

All loved peekaboo- in fact all their smily baby photos were generally taken whilst playing this!

Could I please ask, if it is picked up earlier in children where it isn’t obvious in younger years, what would be done differently as they grow up?

I have spent a lot of time with a behaviour support specialist. She described a very well known pattern where autistic children seem fine in mainstream and then the 'wheels completly fall off' and key crunch points for this are moving from eyfs to ks1, ks1 to ks2 and then year 7. The biggest surges being ks2 for boys and year 7 for girls. Obviously its not a set rule, just enough of a pattern to really notice. Lots of the chikdren are diagnosed after the 'wheels fall off' even though there were plenty of signs before.

If you could diagnose these children before the wheels fall off and get support in place in advance, so much trauma and lost education could be prevented.

My almost 5yo DS is waiting for assessment for ASD (I think it’s really a formality as we have loads of evidence, his paediatrician said the phrase “when he is diagnosed” multiple times). He did point and peekaboo, he was honestly the happiest, most affectionate baby / toddler. I remember when we came home from work he’d come crawling up to us at speed, tongue hanging out like a little puppy wanting a cuddle! Milestones were always late, we always failed those questionnaires, but he did eventually meet them. I did wonder about autism a few times, but didn’t pursue it as he was pretty sociable in his own way, and there didn’t seem any red flags as he made eye contact (we’ve since realised family / close people only and very intense!) and pointed etc. He had huge tantrums and a few times DH and I asked each other if it was normal, but we figured it was age related and fairly standard.

It was only when he was 3yo, almost 4, and we realised that his speech had become very monotone, he monologued about certain things and his tantrums were becoming quite considerable, that things all started to click into place and thankfully preschool agreed and supported an assessment. His paediatrician said that ten years ago we’d have been looking at an Asperger’s diagnosis (they just diagnose ASD now).

Thanks @Spendonsend , I guess I am a bit concerned with one of my kids, but not enough to be really pushing for a diagnosis. I was wondering what I could perhaps do for him now in case things get worse or until a diagnosis does come.

Its hard to know without knowing your exact concerns, but on a basic level things that support autistic children wont harm NT ones. I remember being worried that if my child wasnt autistic after all that i would be doing something wrong by using techniques recommended in autism parenting books, which is daft with hindsight.

So if you think your child has sensory issues, act like the do and see if it helps. it doesnt matter if they turn out not to have autism. If they are finding noisy places overwhelming, they need help managing whatever the cause.

Having routines, explaining transitions, using timers, supporting social events by rehearsing them, visiting places at quieter times in advance, googling menus in advance etc. There are lots of little things you coulld try specific to your concerns.

Yes @Spendonsend , I was leaning towards that too. Thank you.

We had the first appointment for my aforementioned DC this morning, with a community paediatrician. I said I think he’s certainly neurodivergent, and she said she probably agreed.

The only next steps we’ve had is for school to set up an IDP (we are in Wales and here these have replaced EHCPs, statements etc) and then for things to be monitored against that.

I’m worried I should’ve been clearer on pushing for a diagnosis, as the paediatrician obviously agreed he’s not NT!

Why don’t you give the department a call and say, with hindsight, you wish you’d asked for him to be put on the waiting list for assessment? With waits being so long, you kind of want to get on sooner rather than later.

Thanks @Jellycats4life i think I will. I’m usually more assertive with this sort of thing but find the processes so confusing, I don’t know what the next formal steps to an actual diagnosis are.

Wow, we’ve suspected for a while our dd has autistic traits - mainly sensory issues and emotional regulation/meltdowns. She’s also very social, holds eye contact, has lots of friends.

She also hates buttons and two of you have mentioned that!! Made me think…

@Ponderingthemeaningoflife It’s so overwhelming, I know. I always walk out of any appointment kicking myself that I didn’t say this or that. But I’m sure if you call community paediatrics they will clarify things for you.

In my experience it’s the community paed who authorises a referral for an autism assessment. In my case they asked permission (and emphasised that we could refuse if we wanted - as if!) so if you didn’t hear that, maybe they are stalling and going for the watch and wait approach. Since you and they both seem quite certain that he’s ND, there isn’t much point in watching and waiting, I’d say!

No there isn’t is there @Jellycats4life ! I didn’t like the paediatrician‘s attitude of “we don’t label children if they don’t need it”, or something along those lines anyway. A diagnosis isn’t a label!

It’s because he is doing “ok” now - and he is. I wouldn’t say he masks really, he’s generally the same in most settings, but his current teacher is much more understanding and flexible than his last so this year she is doing little things that have probably made a big difference. But it’s not going to be like that in secondary school is it!

Played peekaboo till age 1.5 then had a huge regression and never did it again. Never pointed, still doesn't at 7.

autism is a spectrum condition. that doesn't mean that each person is on a single linear spectrum between "autistic" and "not autistic". it's more like "colour wheel" where each different zone of shades represents different challenges or difficulties. one person can be close to neurotypical in the "yellow" part of the "spectrum" but have very strong effects of autism in the "red" or "green" parts, or vice versa.

It's well within diagnosis expectations that there will be some questions where the answer for a particular child is in the "not autistic" direction but there are hundreds of questions and its the sum of all the questions taken together that is significant.

Mu autistic kids did all that. There was nothing developmentally behind at all. Sometimes very much ahead developmentally.

Adult diagnosed autistic here. Was a typically developing pre-school child in most respects except for hyperlexia and some sensory stuff (hated certain clothing fabrics and food texture issues). Went to primary in the 80s so it just wasn’t picked up - I was just labelled “odd” or “quirky” because I was smart and no learning difficulties. Difficult stages were around transitions and change, teens were a struggle socially, young adulthood found it hard to get to grips with the nuts and bolts of life (still do - I can either work or have a clean house, not both)

The more we know about autism, the more we understand there can be huge variations in traits and needs, and the diagnostic criteria imo are not catching up with how much research is moving on in this area, particularly for girls and women.