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

(76 Posts)
rachndan Fri 03-Feb-17 19:00:37

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.

smu06set Fri 03-Feb-17 19:05:32

Honestly my asd son we didnt notice any differences until age 5 or 6. Like you I had an inkling something was up but for no real tangible reason.
Can I ask what it is in your child that makes you think autism?

sleepy16 Fri 03-Feb-17 19:16:21

My son was diagnosed at 4 (would of been earlier but there was no diagnosis assessment pead at the time), I knew from about 6 months.
He was to laid back, didn't want comforting.
Hardly made eye contact, didn't sleep.
He didn't wean well, but would eat non edibles.
When he was a year old we would take him to the park and he wouldn't play, would just sit there and eat the wood chips.
My youngest though who is 2 is having assessment for asd atm.
I couldn't tell with him until 12 months, he was really forward and then at 12 months he lost all words, lost the ability to wave,clap.
He has only just started to point.
He is very aggressive (which his older brother isnt).
All children are very different on the spectrum.

RingringWhoIsIt Fri 03-Feb-17 19:21:32

I suspect my DD does. She is 2.5 years old. I've thought this since she was a baby - I have it myself. Two separate people who were unaware of my thoughts have expressed the same concern regarding my DD so I don't think it's in my head. She has not been assessed though so this is very much unconfirmed, but I'll try and explain why I think she has ASD.

She doesn't respond to her name. She knows it's her name but she just ignores it if you call her. If she is focused on something she completely blanks out everything else.

She has never needed very much sleep. As a baby she was just always awake. Now she's better but still needs less than most. And she is extremely fussy around foods. Her diet is very limited.

She flaps her hands when she's upset, excited or angry.

She doesn't really play with other children. She doesn't join in the same way they do. Hard for me to put into words, but she isn't like the other children we see. She prefers to go off on her own, or she watches them from a distance.

She has quite an advanced vocabulary but will only talk in front of certain people. And she repeats things a lot.

She is extremely stubborn/obstinate. I know this could be seen as normal toddler behaviour but it's more than that. If you ask or tell her to do something she will always refuse. She will run off and have tantrums.

She has shown signs of sensory issues with certain types of clothing/fabrics/labels, as well as to certain sounds.

There are more things but I'm struggling to think atm. A lot of it does look like normal, toddler behaviour but she does it to excess. Like with the saying 'no' to everything. And her obsession with trains and the moon and caravans. I just know from being around other toddlers she is very different.

lottieandmia Fri 03-Feb-17 19:22:13

Dd1 is severely autistic. Early signs in her case

No pointing, no joint attention even by 2.5 years
Did not show any interest in or play with toys
Could spell out words but not speak
Never turned to her name or said 'mummy' or 'daddy'
By 2.5 she was spending her whole day stimming
Couldn't imitate (massive thing)

RingringWhoIsIt Fri 03-Feb-17 19:24:48

What makes you think your dd may be autistic? (Hope it's ok to ask).

RingringWhoIsIt Fri 03-Feb-17 19:25:23

DD doesn't point either. Didn't realise that was a sign.

lottieandmia Fri 03-Feb-17 19:26:25

I could see that my daughter would need very intensive input all her life which proved to be true (she's 15 now). She is quite unusual though. However, she can learn. She did ABA for years when she was little.

The thing was that when she was 2/3 people really didn't feel as worried as I did because she had no aggressive behaviours and was a really sweet toddler. But I could see the extent of her deficits. People fobbed me off because she wasn't aggressive and I was like 'hang on, she can't even ask for food or learn anything'.

lottieandmia Fri 03-Feb-17 19:27:07

You can do the CHAT test but not until 18 months. It's a screening test, not diagnostic.

rachndan Fri 03-Feb-17 20:03:28

Hi all thanks for your replies. What makes us think it -

She doesnt respond to her name and tends to ignore all attempts at getting her attention unless it makes her laugh.

Doesnt point or wave.

Doesnt say any words (did say mumma and dadda a bit but not anymore).

She tries to avoid eye contact.

She is obsessed with just Mickey Mouse Clubhouse although she does play with toys.

She is more than happy to play on her own.

She hates to be held and rarely wants cuddles.

She is very fussy with her food.

She started walking early but it is the lack of attention that she pays to any attempt at trying to attract her attention and the lack of vocab that has made us concerned.

She has only just turned 12 months so still very young so not sure if she has slight hearing problems, maybe some ASD or just completely ignorant.

Its just confusing.

rachndan Fri 03-Feb-17 21:12:59

We have only really just recently noticed these things but thinking back they have only just changed over the last 2-3 months.

Before that she paid a lot more attention to noises around her, she made a lot more eye contact and seemed a little different to now.

I hope we are wrong but she ticks a lot of boxes for ASD, although I wouldnt have said many a couple of months ago.

lottieandmia Fri 03-Feb-17 22:29:06

12 months is too young to be able to know really. At 12 months my severely autistic dd looked quite normal actually. If I were you I would just look for the protodeclaritive pointing by 18 months. At this point if you are still concerned do the CHAT test.

rachndan Fri 03-Feb-17 22:46:05

Did one online but the questions were aimed at toddlers so some questions had to put no down as it is impractical at her age to be to do. But her score was still high! Hmmm. Concerning and worrying.

lottieandmia Fri 03-Feb-17 22:48:31

I know you're worried but I really would give it another 6 months and then see.

livvylongpants Fri 03-Feb-17 22:53:12

At 12 months no I didn't know.

I knew at 18 months, knowing what I know now I can now see it from very early.

DS is 3.5 and was diagnosed at 2.5,.

He didn't wave or clap and there was no to and fro interaction.

By age 2 he still had no speech.

He wanted me only, if anyone else held him he would scream.

Eye contact was a red herring as he made eye contact with me, it is only now he's older I realise I am the only person he makes eye contact tact with.

He didn't babble, he was slow to crawl a d late to walk, he developed 2,3 words but then lost them

Obsessive with toys and food, lining things up and a very fussy eater.

livvylongpants Fri 03-Feb-17 23:01:29

12 months is very young I would hold out for longer, some kids are just bashful or slow learners.

I know you asked about the effect on daily life, I can assure you it's no picnic.

- constant battles over food, he mainly ways potatoes and sausages and not much else, he refuses to eat at preschool.

- constant battles with local council over 2 year old funding, 1 on 1 funding, The long wait for SALt, the lack of paediatricians etc etc

- the endless filling out of forms that have to show all the things my son is bad at, without being able to say the things he's good at.

- almost impossible to take out, runs in the road,lies on the floor, screams etc etc

- a terror around the house, can't take your eyes off him for a second as no sense of danger, draws on walls, triea to climb on everything and throw himself off.

- the heartbreaking knowledge that he won't be able to attend a mainstream school

- his older and younger sister missing out as we often can't do thinga because DS won't cope.

- getting reports from preschool that no progress been made in 12 months

There is more but I'd hate it to get more depressing.

The hardest bit is that despite all this I love him, every little achievement is a massive achievement in our eyes, we love him harder and possible more than our other children, possibly because loving him is harder, we have to fight for him daily. He's amazing and loving.

His world is an amazing place, I'd love to spend a day in his head and if you put the work In he is so rewarding.

Wow.... That was long!

RingringWhoIsIt Sat 04-Feb-17 10:43:53

You could be absolutely right, but it is very early and definitely too early to know for sure. I think the best thing you can do is try and wait, put it to the back of your mind as much as you can for now. When she is 18 months you can reassess.

DixieNormas Sat 04-Feb-17 10:58:20

I knew before 12 months. We had everything that sleepy has mentioned. He would also stand for hours moving his cars back and forth on the windowsil and stiffening and flapping. He would spin in circles under the lights and had no interest in people what so ever. He did say a few words but that stopped around 13 months.

He was dx with asd at 2.4 years

Day to day yes it can be hard, he hates being out the house traffic noise really upsets him. Doesn't like busy places and screams a lot. Has issues around food and some days will only eat bananas or even nothing. Cannot be left alone for a second and has development delay of around 18 months 2 years. Throws things, attacks us , self harms. Has to be in a pushchair when out

We've had lots of outside support though and he goes to a really good Ms nursery with 1:1.

He's 4 years old now and things are getting easier

rachndan Sat 04-Feb-17 12:52:13

She doesnt mind going out, she also loves playing with her older sister, she does like to rock back and forth and sometimes wakes up in the night making a weird "aaaah" sound rocking. Like I say she only has some symptoms and perhaps she is just a bit delayed with the speech it is hard to tell.

We will see what comes of audiology on Tuesday as to whether there is hearing issues.

Thanks

BornStroppy Sat 04-Feb-17 13:01:17

OP, mine is midst diagnosis, but so far it seems to be accepted that he is.
Initially we thought he had elective mutism. He was referred to salt. And also had audiology test.

He was a perfectly contented baby.
He didn't speak even though he had extensive vocab. In two years at nursery has only just started to whisper to teachers.
Much arm flapping and licking skin, I've heard this is due to magnesium deficiencies.
V ritualistic
Can't bear loud noises, this is getting worse.
He is able to write read basic words and spell, can count and has really good and unique style of handwriting. far ahead of a normal three years.
Obsessed with numbers. I mean ,really Obsessed. Very specific about how they should look, will cry with joy at the perfect 6 for example.
Cannot follow instructions, always the last person to "get it"

I'm trying to help him by ...
Take him to many many structured hobbies.
Indulge his numbers and rituals as much as I can stand.
Try to be firmer with boundaries as he has zero and that's what worries me the most.

AnotherTimeMaybe Sat 04-Feb-17 13:31:49

@livvylongpants that made me cry mate, hope at some point you ll see him get to the level you want him to be

OP for my 4yo I could see the regression when he was 1, very picky with food constantly unhappy crying not playing and stopped pointing . However... Last year we did major nutritional changes (amongst other things) and he progressed quite a lot, he's in mainstream private school and started getting good reports . He gets some bad/odd days but overall he's progressed a lot but the journey we ve had the last year has been loooong and pretty awful at times

For ds2 who's 2 he started regressing at 1,5 stopped saying words, not responding awful eye contact, crying unhappy etc so started same approach and just about getting tiny bit better

Identifying there is something wrong is key!! The fact that some say 12mo is too early doesn't mean it is early! This is where comparing with other kids is useful! The sooner you identify and start supporting the better

Good luck

rachndan Sat 04-Feb-17 13:53:23

Are there many with girls who are autistic?

rachndan Sat 04-Feb-17 14:00:55

AnotherTimeMaybe - what nutritional changes did you make?

BertPuttocks Sat 04-Feb-17 14:20:44

Mine were quite different to each other at that age.

One was extremely passive and didn't really react to anything or anyone. The other was like a whirlwind who couldn't seem to stay still for even a moment.

They both had a lot of sensory issues though and neither of them could cope with loud noises. One hardly felt pain at all, and the other shrieked if anything (including clothes) touched their skin.

Neither of them had any real interest in toys or playing. The exceptions were electronic toys where you pressed a button and it told you a number or a letter of the alphabet.

Neither of them could understand enough language to follow even a very simple instruction.

Both expected things to be done in a particular way every single time without deviation from the usual routine.

The things that probably helped most in the early years were: speech & language therapy, occupational therapy (to help with the sensory issues), visual timetables (helped them to cope with transition and change) and social stories (useful for explaining new concepts and situations).

guggenheim Sat 04-Feb-17 14:27:24

My ds didn't seem to present with autistic traits when he was small. No obvious developmental delays, passed all checks had a fab time at nursery with no problems at all.

Fell apart dramatically when he went to school. He most certainly is autistic and looking back I can pick out sensory difficulties and hyperactive behaviour but nothing that made anyone worry when he was tiny.

In fact, his nursery was great and he had free choice of play all day, familiar staff and close friends so he felt secure. School was a horrible experience, let's call it st bollocks. They felt that his difficulties were him choosing to misbehave and they punished him harshly.

I think what I'm trying to say is that the kind of autism ds has and obviously it's different for everyone, is that he is ok when he feels safe and secure. He needs lots of support and to be supervised and organised but if he is put somewhere where he feels out of control or where they are just shit with children who have Asd then he cannot cope at all and will lash out.

The diagnosis has been vital to make people understand that ds isn't choosing to have meltdowns. The worst aspects of having a child on he spectrum have been the crap from school and jumping through hoops to get support.

On a good day ds is great company and it's a pleasure to watch his progression. some of the descriptors for autism can be very depressing to read but may not apply or tell you anything about your own child. For instance, ds scored very badly on the imagination parts of the ados test. However, he has a super way of using language to describe new things. Today he was looking at a photo of some stripy black and yellow fish and he didn't know what they were called so he asked if they were "bees of the sea" : )

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