Parents of children with ASD, when did you 'know' and how?

[Februaryblooms]

My DS is 13 months. I know he's very young but for the past couple of months I've suspected he's a little different. He doesn't want to interact with me, doesn't respond when called, won't clap wave or point and obsessively spins the wheels on his cars whilst ignoring all his other toys. He also does what looks like 'stimming' and continually shakes his head as if to say no, and does it constantly. He's not picking up any words.

If your LO has ASD, when did you first become aware that something was different and what was it that worried you?

I didn’t really until DS was in Y1 (age 6) when a member of staff assumed I’d guessed. I hadn’t.
I knew very little about autism at that point and he was the only child in my life (don’t work with kids, eldest grandchild, working FT so didn’t spend much time with other children). He has Aspergers so was verbal etc, just a bit ‘different’. With ds2, nursery started flagging concerns at age 3 and I knew then and was much better prepared.
Have you talked to your GP or health visitor

In the hospital after he was born - he didn't seem to want to be held/fed.

In the first year he'd cry until I put him down & wouldn't seem to be bothered by me leaving him with complete strangers for ages. There were other things too, but that was what really rang alarm bells for me.

Most people don't see it. He met all his targets & comes across fairly "normal", aside from talking/interrupting frequently & being fidgety. He was diagnosed shortly before his fifth birthday.

Ive spoken to my HV today yes.

She's coming to do an age appropriate review in a few weeks time, although she did say it would be some time before anybody sought to diagnose anything as he still has time to catch up. He'll then be reviewed again around 2.

I was under the impression that professionals wouldn't assess for ASD until children were at least 2, that's interesting to hear.

Preface by saying this was 20 years ago, and I had never ever heard of Asperger's

I'm not sure exactly when but around 4 or 5 months, I just had a feeling he had something up. I can't even say exactly what it was, as he was super cuddly, and affectionate, but he wouldn't really look at anyone but me.
He was slow to hit his milestones, he never babbled or that.
He wouldn't look when you tried to get his attention.
We were worried, had him to the doctor's over and over testing everything, and being told everything is fine.
When he would reach milestones though, he would then bound ahead.
He went from no talking or babbling for two years, to two and three word combos within days.
By the time he was three, it was like talking with a 70 year old.
He had terrible large motor control, crashed into walls running down the hall, could not catch or kick a ball, ride a bike or that.
He would be so happy, doing his own thing, but could go into meltdown over seemingly nothing. He had so many texture issues, food issues, sleep issues...
It wasn't until he was in junior kindergarten that a teacher spotted his behaviour, recognized it as she had a child herself with it, and suggested further investigation.
By the time he was 7 he had seen all sorts of specialists, and had been diagnosed.
We couldn't find any support, no one had heard of it, and everyone said he was either just an odd duck, or needed a spank.
We learned in time by ourselves how to help him, and ironically that was how I found MN, looking for ideas!

Good news is, he is about to turn 20, and is doing really well. He works, has friends, is just about finished post secondary, and for the most part you'd never know

With my middle dd, four months old. She’s now 9. With my youngest dd about one (she’s now 7). It was more apparent in my 9 year old though ironically she’d be classed as the more high functioning of the two.

Your partner and his son have asd don’t they? I would speak with the health visitor and seek a referral. The system can be slow so it would be worth being in it.

@KateGrey my partners oldest son has confirmed ASD yes. DP is (imo) very clearly on the spectrum himself albeit undiagnosed.

I've spoken with the HV today and raised my concerns. I'm hoping that after she's done her review on 13th of March she'll push for a referral, although she said on the phone that professionals would be unlikely to assess for ASD specifically until least aged 2.

With DC1, I really started to think something was ‘up’ around 18 months old, as he wasn’t speaking. I didn’t think autism (I had very little knowledge of autism, what I thought I knew of it didn’t match with my child), but I thought there was some type of speech delay. I went for a speech and language referral, after some initial therapy he was referred to the main clinic for children with disabilities in our area for a hearing test. There was paediatrician at the hearing test who actually suspected (without saying so explicitly, but I could tell it was because of DC1’s reaction to the test which couldn’t be completed) and referred DC1 to his consultant clinic for neurodevelopment.

DC1 was 2y2m at that point, at 2y8m months we were told they strongly suspect autism but the official diagnosis came at 3yo (so basically 18 months from my initial speech self referral, a year from the referral to the main clinic).

With DC2 we just knew at 12mo. He was very different from DC1 and initially we thought he might be NT, but then we started to see some telltale signs. Because of our history with DC1 the referral and assessment process was much quicker, and he was diagnosed at 2yo.

FWIW during the process with DC1 in the early days I was posting on MN for tips on speech delay and a number of MNers highlighted that autism was a real possibility, based on what I shared. I learned a lot from other MNers, I had a very narrow view of how autism presents.

I’ve found different local authorities do things differently, but the key is that the earlier the diagnosis the better - in the sense that if you have an inkling now, better to keep pushing for assessment than wait several years, as that is very valuable time for therapy to develop play and interaction skills, for example.

I feel as though I'm massively overreacting but I've been in tears today. I've been repeating his name over and over all day long, testing him almost, and he doesn't even look at me.

I brought him onto my knee for some cuddles and he wouldn't look me in the eye, not even at my face. It's like I'm invisible

There is a lot of support in SN chat. It’s very difficult whether you are pre diagnosis or even when you get the official confirmation of something you’ve ‘known’ for years.