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!

The eye contact thing is interesting because that was one of the reasons ds was not diagnosed at the age of 4

apparantly because he
looked people like me and his dad, etc in the eye he wasn’t autistic but it wasn’t until nearly a decade later than someone pointed out (his teachers)that he made no eye contact with anyone else outside of his own family. Dd1 was the same.

Played peekaboo, flirted happily with anyone from his buggy, pointed. Has never done eye contact and has a fairly classic ‘Asperger’s’ presentation. Nobody was surprised by the diagnosis although I’ve had a lot of surprise when I’m honest about how much he struggles.

Neither of mine did. I only remembered dd didn't because I filled in ds's form when he was young. It should have rung alarm bells then.

It’s a very good screen for autism - was pretty much the only sign when my son was 18 months. He is profoundly autistic.

But autism is many things and it may be that it doesn’t pick up the broader diagnosis now.

@TheBestUsernamesAreGone

It's this one:

DC is 13 and on the referral pathway. TBH I didn’t really see any indicators when he was a baby or child. I can see them all now with 20/20 hindsight but at the time he was an easy, fun, incredibly bright child. He sailed through primary and all the teachers loved him because he was diligent, quiet and smart.
Now that I’m looking for signs they are as clear as day. He was a very late talker, didn’t do imaginative play, was hyper fixated on his special interests (it was pure chance that his special interests coincided with anything to do with school, he loves school!). I don’t remember peekaboo but my feeling is that he enjoyed it. He pointed at everything, he wanted to know everything. He has always had sensory issues but they have been relatively easy to accommodate.
We have pursued a diagnosis now because he has struggled socially at secondary school. His form tutor asked why he hadn’t got a diagnosis and I finally started to see what was apparently obvious to many many others.
I feel a bit shit for leaving it so long but I genuinely have a very happy, easy going DC so I hope he hasn’t suffered for not having a diagnosis at a younger age.

I didn't notice until the consultant pointed out that while he clearly spoke to her, his didn't take his gaze off me.

There weren't major clanging alarm bells in infancy but his "tantrums" were intense, started early and I started referal at 7 because of some 3- 4 hour meltdowns. He had other quirks like an intense, prolonged attention span for specific things. He generally was on target, albeit at the lower end of some things and some little skills like drawing a vertical line were awry (he has dyspraxia which was diagnosed sooner)

When I sat down and mind mapped anything that was atypical, either as a strength or a challenge, the picture did emerge and a lot joined up. The professionals took it seriously even though he's always masked and school never really saw it.

He's 12 now, yesterday I played peekaboo behind the steering wheel as he walked up the road to me after school. He quite likes a bit of silly randomness after a tough day of surviving school 😂

Yes, but not really with other people and not very much. By the age of 2 he came across as slightly depressed which is an noticeably odd thing to think about a toddler!

It's difficult that the questionnaires are so black and white, because it makes it hard for parents to decide how they should respond.

I think we probably missed early intervention because I was more positive about his social skills at 2 than he really displayed. (We had no idea he had autism so weren't looking for the signs)

I don't think there's a good solution though. It's always going to be a bit of a blunt tool.

How is it a good screen when so many later diagnosed children don’t fit the stereotype?

Yes did that. Also imagination etc. Socialisation was the bigger issue particularly as she got older.

Mine loved peekaboo. Wasn't pointing. I noticed he avoiding eye contact at 3m but everything else was fine until close to 2y when he seemed to lose some language skills, wasn't doing anything resembling role playing, didn't appear to be hearing us call or speak to him, had repetitive behaviours like head banging when happy, running around in circles for ages without getting dizzy. So many signs of sensory issues back then, but my DH glossed over my concerns in the 2y assessment and the health visitor decided there was nothing to worry about. I remember 8m later seeking advice on MN about my concerns and everyone said autism. Years later we haven't got a diagnosis but he's significantly delayed in many areas. I feel so angry thinking about it - we moved abroad very soon after. If I'd had support from DH and the right advice from the health visitor, I wouldn't have moved when we could have had support in the UK. Now we're stuck where we are because we can't get back into the UK system easily.

When the CHAT screen was developed (checklist for autism in toddlers - which uses this as a key indicator) then many of the people now being diagnosed with autism would not have been diagnosed with autism. The diagnosis has broadened. I’m not saying that’s a bad thing. It’s a neutral statement.

It remains a good screen to pick up toddlers with autism (before the age of 2). These kids likely have a different type of autism than those being diagnosed later (see thread from earlier this week). It is certainly a very useful screen for children who need pre-school support and intervention.

But l would have liked my DD’s picked up early. Then we would have been able to work on communication and sensory issues.

Ibstead she had a tough time at school with anxiety and other stuff.

Early diagnosis would have made stuff so much easier for her then and for the rest of her life.

it’s a crap screen.

@Sindonym DD2 would not have been picked up by the CHAT. WIth hindsight we should have realised something was up when she was around 9, but before then given our state of knowledge at the time there was nothing to see.

Knowing what is known now, it's screamingly obvious.

It’s maybe not possible to pick up some kids with particular types of autism early - that doesn’t make it worthless. When my son was younger I was invited to take part in some research with Cambridge. As part of the research we had to complete the Autism Quotient for each member of the family. psychology-tools.com/test/autism-spectrum-quotient I couldn’t complete it for ds1 at all because a lot of the questions were completely irrelevant to him, - eg ‘I enjoy social chit chat’ - dunno he’s non-verbal. Or ‘I prefer to go to a library than a party’ - depends which one has the best hoover. Does that make the AQ useless? I did point out to Cambridge they were excluding a whole bunch of autistic people from their research with their insistence on that being used. It’s useful for a certain group of autistic people I guess - no use at all for the profoundly affected. The CHAT tends to pick up those who
are more profoundly affected because they have no developed early means of sharing attention - and pointing is a developmental milestone.

The sort of early intervention profoundly affected kids get is Portage, maybe PECS or Makaton. The CHAT is pretty good at finding those kids.

My son was diagnosed age 4 with classic autism and severe learning difficulties,he never pointed but loved to play peek a boo

I think the AQ is helpful for some groups of autistic people and less helpful for others. DD2 scores very highly on this and I think it's one of those that is useful for picking up autism in females because it captures situations where socialisation and masking make a difference.

I have photos of my son playing peekaboo Brandy 😍

100% similarly to the CHAT it captures one part of the spectrum and is probably not applicable to other parts of it.

Mine pointed late but before 2. I don’t remember if he liked peekaboo. The late pointing, non responding to name etc were all clues in toddlerhood that he was autistic. He failed the CHAT at 18 months. He passed it with some wishful thinking by 2. At 6 we are still waiting for diagnosis.

It’s appalling that you are still waiting @Hoowhoowho as it’s the ‘not passing CHAT by 18 months’ that is the increased risk of autism. Passing at 2 is very delayed and therefore should still be counted as an indicator for autism.

I would say no my dd didn't point, she would take my hand and pull me towards what she wanted, once she started walking,
I only remember her pointing a couple of times in her whole life and she's 5 now , she still doesn't point at things

The peekaboo thing I dont understand, how do you play peekaboo?
If they mean does your child respond to peekaboo, I dont think dd ever did,
she might have smiled a few times but would lose interest very quickly
I don't remember her being at all entertained in me peekabooing her, she would look at me and then run off somewhere else

My daughter was diagnosed at 9. Met all milestones. Quite precocious speech. But always felt she was different from her peers in a way I couldn’t quite define.

Son diagnosed at 5 but he was much more obviously delayed with speech and communication.

That’s when I started looking into autism in girls and everything suddenly made sense.

I think a lot of kids slip through the net as long as they don’t fit a really stereotypical idea of autism. Being social, for example. This meme is pretty much my daughter to a T when she was younger.

My son hid behind the curtain and would poke his head out laughing while I said peekaboo @pinheadlarry - and repeat - it became a funny game with lots of laughter. He also lifted his arms to be picked up which a lot of profoundly autistic kids don’t do. He still leads us by the hand now and is in his 20s 😁