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.

She will sit next to other children and interacts brilliantly with her older cousins and her sister. I suppose because she can walk and other babies she interacts with cant so she can do more with the older children at the moment.

Her baby babbling is not words more just different variations on "aaaaaaahhh".

She was saying dadadadada and mamamama about 2 months ago but stopped as soon as she started to walk - I wondered whether the walking has taken over for now? She is non stop walking she loves it.

She claps and she laughs and squeals.

She just doesnt look when her name is called and only reacts to certain sounds. And her "babbling" isnt forming anything like words.

She also doesnt point yet.

I am hoping we are making something out of nothing but the hearing is still a concern.

Its been 10 days since paed said he would refer her and heard nothing yet.

DS is 12mths and I'm also worried. I'm on the spectrum and I so don't want him being like me.

He doesn't point, no clapping, will wave 10% of the time.
No response ever to his name
Breath holds and then vomits in his mouth and chokes on it with loud noises
Hand flaps when having bottle
Plays on his own a lot
Only words are Dada and Mama but he mostly says Dada repeatedly
Weaning is terrible, he hardly eats anything
Eczema
We go through terrible sleeping phases and then suddenly he will sleep through the night

Forgot to say that he also will not tolerate cuddles and the only time I get to hold him is when he is drinking a bottle. We say he is constantly busy because he is so engrossed in something and won't pay any attention to us.

My oldest dd with autism and my middle child are only two years apart in age. So obviously I watched dd2 like a hawk for signs. At 12 months she wasn't different enough from dd1 for me to be convinced she was ok. She didn't babble much - she was very quiet (still is really). When she started to look for me because she wanted something, or try to reach something she wanted and then look at me I started to relax a little. Another thing to watch out for is functional 'yes' and 'no' - this can be a difficult concept for someone with autism.

Otoh dd3's first word was a functional no and I feel she's quite likely to be on the spectrum, although she had no language delay.

So there is no way to know definitively at all. And it's all about looking at the bigger picture over time.

My son also does the arm tensing thing. The more I read the more convinced I am. The health visitor and do both think I'm nuts though.

Gosh reading this really reminds me how differently asd can present in different kids! Really interested to hear about the baby who wasn't interested in feeding, my ds was exactly like this.
He was dx at 2.5. We started an ABA programme three months after. Best decision I ever made. You will struggle st this early stage but if still concerned at 18 months start making noise. You have to I'm afraid or the buggers won't listen.
Best of luck.

Agreed, Karloss. And we also found ABA to be a great teaching tool.

Private audiology appointment was inconclusive as she was not happy at being made to stand still whilst they conducted test.

Same went for the NHS audiology appointment.

Got another appointment to try again in a few weeks. If she doesnt co-operate then they will discuss putting her to sleep to determine whether she has hearing issues.

Im not convinced either way yet - one day I think she can hear things and the next day i think not. She hardly responds to anything including her name and doesnt seem bothered by any noise.

If there is nothing wrong with her hearing then I am sure it must be autism, perhaps a mild case.

She is now 14 months -

Reasons we think she doesnt have autism;
Can walk (has done since 10 months)
Can feed herself (by hand not using utensils)
Claps
Says mumma
Doesnt line things up / doesnt repeat tasks or playing over and over
Laughs if finds things funny
Plays well with her 5yo sister
Plays nicely at nursery (only goes once a week)
Affectionate to me (her mum)

Reasons we think she may have autism;
She doesnt hold eye contact for long
She doesnt point
Rarely responds to her name (not unless said loudly)
She doesnt say/babble anything other than mumma
Not very affectionate to anyone other than me.

Ticks a lot of boxes on both the hearing and autism. But then again not sure if she is just a bit delayed in some areas but advanced in others - like the walking.

He never slept. I mean never. An average of 3 hours in 24. It was exhausting. He didn't seem to attach closely to me. He was just as happy with anyone else. He cried and cried and cried and cried and cried and cried. As he got older he would fixate on things obsessively - wanting to play the same game over and over again - nothing would shift his interest.

But he has turned out to be very easy to live with. He's affectionate and laid back.

Anyone else have any experiences of early signs at around 14 month mark?

She has her ENT appointment tomorrow. We are still worried about autism as she still doesnt do much eye contact, she wouldnt pay attention long enough to follow instructions, doesnt point and doesnt say anything other than mumma and baba.

She is 15 months old in a couple of weeks.

The ENT appointment determined glue ear. We are being referred for another appointment with possible grommit fitting.

I am still not ruling out possibility of ASD but the glue ear symptoms sure does explain a lot.

Anyone else have glue ear and autism or glue ear instead of autism? Would have thought there would be more of us out there?

I know a child who through a catalogue of incompetences had her
Profound hearing loss missed and not properly diagnosed until she was two and a half. Until then many professionals were convinced she was autistic.

Of course glue ear doesn't usually result in such a significant hearing loss but some behaviours in HI little ones can appear similar to autism. Even a mild/ moderate conductive loss can have a big impact on language development and understanding.

Might seem like an odd question but you say she doesn't respond to her name. Does it start with a high frequency sound? ( s sh f th t c)

I have ds and dd with autism. With ds I knew there was something wrong when he was six weeks old because he was nothing like his older siblings.My concerns are documented in his red book from then. I knew he had autism when he was two and he was diagnosed at two and a half.
With dd I suspected when she was eight months and I knew by the time she was thirteen months. She saw a paed at 17 months and had a diagnosis by her second birthday,
Ds and dd are like chalk and cheese so my concerns and their behaviours differed enormously. But in the first year neither ds or dd smiled very often, ds never seemed to recognise that I was special to him and dd had no separation anxiety. Ds screamed 20 hours a day and nothing comforted him, dd never cried and made no demands ever. Ds spent ages turning pages in books, and books full of text were just as interesting as books with pictures. Ds loved looking at lights and things that spun and he'd spin wheels on cars and prams for ages. Dd patted everything but didn't pick things up but would hold a spoon or a toothbrush constantly. Ds never pointed or waved nor was particularly interested in my efforts to interact with him. Dd lost all her skills at twelve months but before then she could say where/hair/square and go go go (if I shook the car keys) and could wave, clap and do round the garden. Both walked on tiptoes and ds flapped his hands and dd twirled strips of paper/string or hairs.
It was a gut feeling I think for me and based on having had older dc.

Ds failed three hearing tests but I knew he could hear because he could hear a packet of biscuits being open in a different room it was more that he was distracted by the lights at one test, he wouldn't stop screaming at another and he didn't respond to his name at the first one.
Dd passed hers but they were amazed at how compliant she was in so far as she never moved and sat motionless for ages without complaint.

The thing is a lot of ASD/Autistic traits are normal toddler behaviour, it's o lay when they don't stop doing it and are older that it becomes apparent.

I think just turned 1 is very very young to label a child unless they have severe additional needs.

DS1 was a late talker. He was 2.5 before he uttered a word but when he did he went from nothing to basically talking like all his friends over night. It was like he didn't want to talk until he could do it completely! It then became apparent that he could also read!

He used to have tics that would last a few months and then he would move on to something else.

Thinking back it wasn't until he was nearly 2 that he started to seem different to his peers, he never needed much sleep and would only catnap for 10 minutes or so in the day as a baby but I'm not sure if that is a reliable sign of anything!

In fact for the first year of his life he was a perfect baby, people used to comment on how content he was and how he never cried.

DS2 had glue ear. Try and get grommets as soon as possible, we kept getting fobbed off even though DS2 had burst ear drums every couple of weeks from age 5 months. He finally got grommets age 3.5 but the delay had severely impacted his speech.

Hi Rach
I have a son with ASD but I have also worked with 0-3 with ASD for a long time.
Our borough diagnosed early but never before 2 years.
I have worked with very young kids with obvious ASD. They are the ones with 'classic' ASD.
The do not babble or say words. They may make 'odd' noises
They seem oblivious to others around them.
They do not seek affection or reassurance from their parents but will climb on them and 'hug' them. This is sensory seeking rather than cuddling.
They don't play with toys.
They are not interested in tv generally but may have a favourite show.
They don't like being read to.
If you attempt to play with them they will move away.
They look at things from an odd angle and may spend long periods looking sideways at things.
They often have feeding difficulties.
They do not 'ask' for their bottle or a drink or to be changed and their parents have to anticipate all of their needs.

The above is not a description of one particular child but an idea of what a child with severe autism may look like at 12 months.

If you are concerned about your child you will not harm them by using strategies used with children with ASD. From the description you give it is too early to assess your DD but it is sensible to monitor their development.
You can use early intervention techniques now and if your DD develops 'normally' you will not have lost anything. If they do not you will have got the head start that you are worried about missing.

I knew by 12 months, he did have issues with his hearing which threw people off and wasted time with early intervention.

Was told not to worry until he was 2, I had him at the gp on his birthday and saw a private specialist 3 weeks later!

He was an excellent baby. Very calm and daycare teachers told me "in 15 years they'd never seen such a calm and content baby".

He got angrier at the world. He couldn't talk until he was 4 so would cry, scream, be inconsolable every day. It was a vibe that he found the world a difficult place to be.

When we visited people with children he would remove himself from the others and do his own thing.

Occupational therapy changed our lives. He was actually sensitive to light, sounds and movement. Within weeks he was using strategies to deal with this himself.

Our 10 year old son has a PDD- NOS assessment. His ST is convinced he's high functioning on the spectrum but he's quite empathatic, makes eye contact etc so the psychologists we have taken him to were not convinced of that

He..

• didn't talk until he was four. Well actually, he did start saying small sentences at 12 months, stopped completely at 18 months and then his speech was garbled from 2 to four. Lots of echolalia, his own words for things (which were consistent - eg ketri for ring) . Completely unintelligible. Years of therapy later and he can be understood 98% of the time now but still struggles enormously with his written language.

• he was late to walk. He never crawled, just scooted along on his bottom. Then he cruised on furniture for a whole year until he was almost two and just when we had a discussion about taking him to the doctor about it, he started walking independently and was steady as a rock. None of the usual tumbles etc.

• It was the same with potty training. Absolutely screamed and arched his back when taken near the potty or loo. Refused to go near it. Eventually got fed up because he was starting daycare in a few months and had to be potty trained to enter the age appropriate room (4+). So I started taking him out without his nappy. If I did that at home, he would just pee in or soil his pants. He had enough social awareness not to do that whilst out though. He would just hold for hours though. Whilst we were at the park one day, maybe after about 2 weeks of starting this, I went to the loo and I heard him go into the next cubicle and do a wee. Within a week he was 'trained' (even though we didn't do it!) for both. He was 4.

• he was obsessed with lining things up , especially cars, and playing with their wheels. He didn't play with them in the ordinary sense of making 'brum, brum 'noises and pushing them around. As a baby, his eyes would be fixated on any ceiling fans although he grew out of that. He stimmed by whirling around a lot.

• he has hyperlexia- we had to teach him to read first to teach him to talk. He could read amazingly well with all the right inflections but you couldn't have a conversation with him and he had no idea about the meaning. He's better at understanding now but doesn't make the connections between what he is reading and how his own written language should be formed.

• he likes maths and things which are visual. He builds amazing lego and Minecraft creations which have high degree of symmetry. Struggles with anything which has written instructions.

• he was and is attracted to other kids like himself or much younger.

DS was also an 'easy' baby - slept a lot. He was east to feed until 2. Then his diet was very rigid for about a year - he would only eat toast, peanut butter, carrots and yoghurt. Then he grew out of that and hasn't been particularly fussy eater since except lately.

Hi,

Just been reading all the recent posts. Thanks.

We have an appointment for her at a bigger hospital in June who will assess her and discuss the possibility of grommets. Although I am sure she can hear some things. So not sure if the glue ear is affecting things as much as we thought. Jury is still out on that.

We have had a HV come out and assess her and want to review things further after the hearing appointment.

Her behaviour at present is -

Doesnt do much eye contact unless specifically interacting with her ie tickling her or changing her nappy.

Doesnt respond to her name.

Doesnt point.

Doesnt wave.

Only babbles mumma and occassionaly baba.

She loves to be chased. She likes playing with her 5yo sister.

Getting slightly better with food.

Likes to play with her toys.

She likes to clap.

She loves to walk and practically run.

She now feeds herself her own bottle (milk or water).

She doesnt/cant feed herself with a spoon.

Has learnt how to climb up on and get down from furniture.

Sleeps well (touchwood) 7pm until 6.30/7am and a 1-2hr nap mid morning.

Likes to sit and have a cuddle with mummy, not daddy unless watching Mickey Mouse.

Finds Mickey Mouse (and her sister hilarious).

Probably some other things I cant remember. But I dont know whether it is normal but delayed development or whether there is an underlying issues.

Have to wait until June to either resolve or rule out hearing as an issue.