Autism - what were the early signs in your young ones?

[rachndan]

Hi all

We are sure there is something different about DD2 who has just turned 1. We cant tell whether it is hearing problems or whether she is on the autistic spectrum (or both)?!

She has a private audiology appointment next week whilst we wait for the NHS audiology and ENT referral and another referral to the community paed department.

I just wondered any of you guys out there with little ones with autism, if you noticed it as early as 1yo what were the signs/characteristics that led you to think of it?

And those of you with older children with autism what are the day to day challenges you face of the disorder?

We are very worried but want to be proactive and do all we can for her especially as she is at such a young age and at a crucial time for her development.

Thank you.

My daughter actually failed her hearing test, not because she couldn't hear but because she was too busy fiddling with the handle on the chair.

In answer to your question about girls with ASD, there seem to be more boys with autism based on my observation that my dd is one of only a few girls in her autism specific school.

In recent years I've realised that I myself probably have Aspergers and I suspect dd's father does too. Women with AS can present very differently from men though.

OP, we got a DC at 3 but I knew at about 8-9 months:

• velcro baby. extremely attached to me. would not let anybody else carry her, take care of her.
• constant crying
• horrible sleeper
• kept spinning the same toy for hours. it was the only thing she did at times
• very difficult to wean

later on (at about 16-17) months we noted that she did not respond to name. very little understannding of language (couldn't follow easy instructions). stimming, expressive language didn't come .

she is now 9 and has a DX of severe learning diffs on top. despite it all, we cope fine..it isn't easy, it's not the life I wanted. it it's very tough on me (working all week and caring). but we are fine. we really are.

Hearing test is a good start. sometimes children with glue ear e.g. can present like ASD. at least you are on the ball early.

My 5yo son has Autism. As a baby he was extremely 'good'. He hardly cried, was so content and slept well. Lack of eye contact, fixations on items and staring episodes were apparent from a young age but I didn't really think much of it at the time being a first time Mother. He's always been fixated in certain items - pressing buttons, doors, washing machines etc.

As time went on, he never said words or learnt to speak, he lacked understanding. He didn't point or wave until 2 and a half and didn't speak until he was four.

His behaviour always seemed a bit 'different'. For example from a young age he seemed to have a great sense of direction. If you went a different way to usual, he would have a meltdown even as young as one. If you took him to play group, he would do his own thing opening and shutting the doors and playing with taps and he would SCREAM when you took him away. He was never interested in playing with other children. He has never had a sense of danger.

Also, fear of loud noises was a big thing for him. He has always been a extremely fussy eater!

He was diagnosed age five with mild Autism. He is a happy five year old boy. He can be hard work but he is so lovely. We are very likely that he is so affectionate!

In answer to your question about girls with ASD, there seem to be more boys with autism based on my observation that my dd is one of only a few girls in her autism specific school.

Girls with autism are hugely under-diagnosed, though this is improving. Recently there was a story in the news about how many mother's that had sought help for a child with suspected ASD were discovering that they had it themselves.

In my case, as a child I was pretty much textbook Aspergers. I see this now that I'm aware and I look back and wonder how on earth my mum thought I was 'normal'. (Don't mean to say having ASD means a person isn't normal, I just can't think of a better word. I don't mean to cause any offence. Hope that's ok). My parents and teachers never picked up on it. I think a lot of this was because I was very intelligent and very quiet so did well at school and caused no disruption. I think this probably happens a lot. Also autism was, and still is by some, considered a male disease. Girls also tend to be better at masking their symptoms. They mimic social behaviour to such a degree that they can appear 'normal' (sorry again). But this can be exhausting and I think, speaking for myself at least, can contribute to depression, anxiety and other forms of mental illness. I think in general, girls have to be much more severely on the spectrum to get recognised as having an issue, although this does seem to be improving.

Yes I agree ring - certainly in the case of HF girls. I was like you as well but I never fitted socially.

My dd is severely disabled so in her case no mistaking her autism. I've not come across many girls with her type of profile, or even boys actually. But you are right that autism in women isn't recognised properly.

I never fitted in socially either. It's tough but good to know why.

Sorry I hope I didn't come across as dismissing or criticising your post before. It's just I feel quite strongly that it's unfair how girls get under-diagnosed.

My son is severely autistic (now a non-verbal adult).

He regressed at around a year old - his development until then was pretty typical (held out hands to be picked up/played peekaboo etc).

He lost sounds at around 15 months. By 17 months I realised he wasn't pointing. I had him assessed early but was told he was too affectionate & has good eye contact so couldn't be autistic He was eventually diagnosed just short of age 3. (He's still affectionate & has great eye contact with familiar people).

Not at all ring - I agree with you entirely. As I said my dd is very severe. I've spent my entire life wondering why I felt like an alien.

Yes the affectionate thing is certainly a red herring. My NT child is the least affectionate of my three.

Bees of the sea is an amazing description.

I remember thinking there was something different about DS1 when we were still in hospital after his birth. He just didn't seem interested in feeding. I got used to waking him for feeds & it stopped seeming like an issue because it was our "normal".

By the time he was 4mo people would tell me what a "good" baby he was because he'd happily sit without demanding attention for hours on end. That was the first thing that really triggered alarm bells. In retrospect the not feeding & crying as if being held was stopping him from sleeping should've been the first signs.

He met all his developmental milestones so the HVs kept fobbing us off. I'm not sure exactly when I started thinking "autism" in relation to him but it was certainly before he was 2.5y.

We sent him to nursery at 3y in part so that some other adults who knew what to look for would get to know him. We decided not to mention our concerns until they'd had a chance to form their own opinions. He'd been there about 6 weeks when we came clean & they were relieved they hadn't had to come to us with their concerns.

He was diagnosed at 4 & is now nearly 6. He's considered "high functioning" & is relatively easy most of the time. Our main struggles are with routine changes, whether it's an unexpected thing or just a switch between playing/eating; dealing with endless questions about anything & everything & even when you think you've successfully shutdown a topic he'll actually just be taking a moment to think of a new question; and talking to strangers - everyone's fair game, whether it's a random person we're walking past on the street or the neighbour kids who he bangs on his window & shouts at. It's exhausting. We have very few angry meltdowns if we don't push him into too many high-stress environments but we have regular manic episodes. I prefer the angry ones because I can relate to feeling violent when angry but struggle to deal with someone laughing about hurting people.

I'm another undiagnosed female so I relate to him in a way DH doesn't so much. DH, however, is often a lot more patient than me, especially when he's making a lot of noise or doing his hideous monotone hum. That triggers my misophonia. Mostly he's a lovely child, with an insatiable appetite for knowledge which I'm trying to foster while still protecting my sanity own brain space!

ShootingStar could be talking about my son. He was very slow in certain subjects, but excelled completely in maths and music from a young age. Found social situations an absolute nightmare. Now he's 17, is self taught on 3 different instruments, has a really good circle of friends, great social life, and is the nicest, kindest person you could ever wish to meet

Following this as have concerns about my 19 month old. Health visitor has been out and isn't concerned but I suspect there is something not quite right.

Concerning issues
Doesn't always respond to name, especially if concentrating on something (he is still yet to pass a hearing test properly so there may be issues but I suspect this is concentration linked as they tried to see if he would respond to touch during the test and he didn't respond to that either).
Doesn't point.
Doesn't always make eye contact.
Doesn't gaze follow.
Fairly late walker (17 months).
Bites, nips and pulls hair a lot.
Used to wave but hasn't since he started walking.
Has huge tantrums and throws himself backwards, usually if food runs out.
Likes tv a bit too much.
Has lost a few words that he used to say.

Things that he does
Babble.
Says a couple of words and the start of some others.
Just started following some instruction.
Brings things to show me (again this is new).
Follows a point.
Shakes head for no.
Eats like a horse and isn't fussy.
Is pretty affectionate.
Comes up and claps your hands for a song.
Stands and taps the tv unit if he wants it on.

We believe he has food allergy issues due to eczema and loose stools. Has been on a cmp free diet for a week and his eczema seems a lot better, we are removing gluten in a week also so will see how it goes.

Some of you may have read it already but there is a book written by Luke Jackson called Freaks, Geeks and Aspergers. He was 13 when he wrote it and he discusses living with Aspergers as a teenager. I know that's not quite relevant for younger children but I found it a really good read. If you look the author up, he and his mum and other members of his family have done a lot of work in this area. He has quite a lot of brothers and sisters, most of whom are at varying degrees on the spectrum. There are some talks on YouTube with his mum, and he has a website (though I don't think it gets updated anymore).

The private audiology appointment didnt help. She hates sitting on our lap unless watching Mickey so had zero interest in the sounds - would have been better in a play environment.

When we got home we played some sounds and Mickey sounds when she was playing and she looked over at each.

Now a waiting game for an ENT appointment and community paed appointment.

She still doesnt often respond to her name and she doesnt point and doesnt babble. She does everything else that she should at her age (12.5 months).

Still not sure if its early autism or hearing or nothing (other than late developer for talking).

Rach my son has been the same at every audiology appointment, it's a nightmare. We have been told to take a book next time to keep him interested while they do the electronic test as he won't sit still for that either

We are just so worried as we are no further forward.

One day we think its hearing.
The next we think a hint of autism.
Then the next we think she is fine.

I know someone whose child didn't point til 17 months. He turned out to be NT.

Autism is all about how the pathways in the brain develop and whether a child goes off down one route or another. So at 12 months it's all very unclear.

Hi RachnDan,
All those symptoms you identify in your 1 year old I had in my 2.5 year old. He was completely non-verbal, wouldn't point and repetitive in behaviour. Medics were very concerned but I was convinced he couldn't hear. He underwent an audiology appointment and immediately we were told he had hearing problems. Grommits fitted and an immediate improvement. One year on his behaviour has deteriorated massively and an Ent appointment has shown grommits have fallen out and hearing has gone again.
Do follow up on the hearing. It effects eye contact, behaviour and so many markers that can be markers for autism also.
Best of luck on your journey whatever the diagnosis. I just thought I would present the flip side of the coin!

Lottieandmia - what is NT?

Izzadora - thank you for that. She does respond to some sounds, not all. She does look at us but doesnt hold a gaze for long. She does respond to her name but not often. The private audiology appointment was a blow out as she wasnt happy and just sitting on our lap.

I would be over the moon if something like grommits worked and we noticed an immediate change. Would be a weight off.

Id hate to think of her in her own little sound bubble.

With my DD (now 8)

Age 2:

No talking, baby babbling but the same repetitive thing if that makes sense?

An obsession with in the night garden, to the point she HAD to watch it before bed.

Routine. From the age of 5 months thrived on routine and would sleep and wake same time every morning.

When seeing something she liked she would tense her arms and hands and make a strange noise, hard to explain but I've noticed a lot of asd kids do it?

Only playing alongside kids, not interacting, never initiating play, preferring to play alone.

Either very happy or very upset.

She's now 8 and doing fantastic. Much more social , still waiting on a diagnosis though!