what were the earliest signs/symptoms?

[KezT]

I know some people are positive they can specify exactly when they/their child first "became" autistic, but I was wondering what and when were the first signs/symptoms people noticed?

 

not necessarily the first DX behaviours, or even the first time you realised there was a "difference", but with the benefit of hindsight, what was the first thing that caused difficulty/was not NT?

 

in my son's case, with the benefit of hindsight, I always thought it was his sensory issues, which showed up on the day he was born as he wouldn't be swaddled/confined in any way, and absolutely screamed when I bathed him (the water would've been much too hot for him). however, discussing his hypersensitivity to bass sounds last week, I remembered how I had to leave a long looked forward to Rocky Horror Show while still pregnant, as he was kicking me so much!!! was the hypersensitivity there even in the womb?

 

It was 4 years later that I actually noticed "abnormal" development, and another year before any professionals listened to me. but looking back, the signs were there right from the start, or maybe earlier. how about you?

[trekster]

My overfriendliness was noticed from age 3. Also i could load a BBC acorn computer after seeing a demonstration done once. At nursery i didn't play with other children (i was an only child though).

[BusyLizzie100]

These are the first signs, with the benefit of hindsight, of things that caused difficulty/were not NT, as you asked.

 

DS1. Difficulties feeding as a newborn, although not as severe as his middle brother. Sensory issues and a tendency to be 'full on'. Diagnosis came at age 7. He's now 12.

 

DS2. Difficulties feeding as a newborn; related to low muscle tone and sensory issues. He was back in hospital at 10 days old after losing 25% of his bodyweight. Diagnosis came at age 4. He's now 10.

 

DS3. Incredibly 'full on' as soon as he was mobile, socially often 'over the top'. Diagnosis came this month, at age 7.

 

Lizzie x

[coolblue]

From birth. Strong aversion to lying down - much happier vertical. Midwives said it was 'wind'; now suspect reflux and vestibular abnormalities. There is a theory about reflux causing inner ear infections. Wouldn't surprise me.

 

cb

[darky]

With my daughter it was when she was about 2 months old and never satisfied on bottles. I breast fed for the first few weeks but she was wanting to feed all the time, and gave me blisters. She put on weight from the word go, and would take 9oz bottles straight down and scream for more, and often would have another 9oz bottle, belly ready to burst, and still screaming and routing for bottles. Then when she was about 10 months old and crawling. She would crawl to the same spot over and over and over again. She was content, but very different to my boys, that I just put down, at first, to her being a girl. It was when she started smearing and eating her poo, and not appearing to learn that got my attention. When I say not appearing to learn, she constantly grabbed at things, but hurting herself didn't stop her doing it again and again. She was incredibly lively, right from a young age, never slept during the day from about 10 months, and wanted to eat constantly and I had to move the food to locked cupboards, she would also eat anything on the ground, snails, worms, stones, licking benches, windows all the time and she was quick. She was floppy all the time, really unbalanced on her feet, as if she was drunk. She didn't appear able to listen, she never sat down, never watched tv and never played with anything, just wrecked what she got her hands on. She hated being restrained, car seats, buggies, she did nothing but scream. Going into shops with her at the age of two was tough. In a buggy, screaming, trying to put her feet down to stop the buggy, I had to tip her backwards in order to push the buggy, and have to walk down the centre of an aisle to stop her grabbing. *shivers* thank goodness we are over that lot. It still gives me nightmares

 

In hindsight, my youngest son, I have a photo of him shortly after he was born, wearing scratch mitts and he covered over his eyes like playing peek a boo to avoid the light I think. He hated going outside and I could never figure out why. I would only have to reach for my coat and he would scream. He didn't interact much, I thought he was just placid. He used to head bang and rock from a very young age, and would crawl with his head down on the floor and used to watch TV whilst hung upside down. His development was delayed, but he was ill a lot and in hospital a lot, so both me and the health visitor put it down to that. He loved being swaddled as a baby, but hated being uncovered, even in the summer. He had fears of dogs, motorbikes and tractors. He also had a strange monotone, but at the same time very posh voice. People used to comment on that quite a lot. He was very vocal, lots of noises, whooping, clapping, whistling and flapping.

 

My eldest, is and was the most placid and such a happy child. He never had tantrums or anything like that. A child could take one of his toys, and it never bothered him, he could be pushed, shoved or hit by a child and he didn't react. It was his memory though mainly. He loved Thomas the tank and that was all he played with. Only I didn't realise at the time, he wasn't actually playing with them. He lined them all up and I only noticed that a few years ago whilst watching a video of him one xmas. He knew all of the "wengins" could name them by colour and number as well, and you couldn't fool him by covering up a number, he recognised it straight away. He was reading before the age of three. He recognised signs and symbols from adverts I think. We would be driving and he would say there's a Tescos over there mummy. It was quite a party trick. I used to say to people, show him a carrier bag, and he will name the shop by the logo. He had an incredible memory. He also used to do this thing, and I noticed Ben does it in that Young Autistic and Stagestruck, where he would speak a sentance, then mouth what he just said like he was whispering.

 

All completely different!!

[justine1]

Sam is the second child.He seemed just like his brother at first,slept well at night,ate well,pooped fine,like any other newborn.Then he started crying all the time when I was out of his sight or when I put him in his cot he would scream.I started letting him sleep in my bed so I could get some rest,but even then he had to sleep in the crevice of my arm,every time I turned over he would scream and I couldnt get up to use the loo.

 

When I cooked or bathed he would sit in his bouncy chair so he could see me.He would spend most of the time in the bouncy chair.Then he started babbling but when he did it he would be staring at me as if he was telling me something important.I didnt think him talking early was anything unusual because my eldest did the same(he could talk in proper sentences at 13mths)Even when I went for the dx appt I was shocked when she said his vocab is to advanced for his age,I thought he just picked it up from my eldest son-genetics.

 

He started staring at the telly from a young age too and would wince when we turned it off,my eldest never watched telly so this was a shock,but again thought he is just different to his brother.He never weaned very well.He also liked my dads old rock music,Guns N roses and Bon Jovi I hate this music and didnt listen to it,but it seemed to calm him,he would even bounce himself quicker when listening to it.

 

When he was 11mths he started walking but he didnt let on that he was walking,so I thought he hadnt started,then one day I was coming downstairs and saw him out the corner of my eye walking as he saw me he sat down really quick,then started crying for me to pass him the toy he was walking for.This happened on four occasions(about a week),he would not walk when I was there,he would do it when I leave the room,its like he wanted me to pass him things and do things for him even though he knew he could Then he decided he can walk in front of me.

After that he wouldnt do so outdoors he wanted to be in the pushchair or to be carried this continued until age 4 1/2.

 

The other thing was from age 18mths he learnt to take his clothes off and would refuse to keep them on,I would put it on five/six times,he wanted to be naked.He went through a stage age two where he would go everywhere with his wellies on even sleep with them on,this lasted 6mths!!!At the same time (2) he would slide down the stairs on his bottom and jump from sofa to sofa as high as he could.

 

When I talked on the phone or when we had visitors he would sit on my lap and try to keep my attention on him all the time,my brother always said he seems jealous not allowing me to talk to anyone even people he knew(my family)My brother was the first person to notice how different he was and Sam was 3 when he mentioned it but only took him to the GP last year because until then he wasnt hurting anyone(except himself long time ago but thought it as stress cause of mine and his dads relationship breaking down!)

[Lynden]

For us the first signs we thought anything major was wrong was when he was around 10 months and he started rocking, head banging and hand flapping. He had issues before then with feeding / reflux, and he was a floppy baby but nothing really that made us think autism. Also, he never took to solid food till he was 14 months and never mouthed a toy. I expressed my concerns to our health visitor and was told I was comparing him to his sister (she's really bright, got the whole second child boys are slower thing). We moved to a different area and the new HV there was totally fantastic and could see why I was concerned. We were referred to the child development centre at 13 months, had an informal diagnosis and was having physio and salt by 15 months and was formally diagnosed as autistic (with global developmental delay and hypotonia) age 2 and 2 months following a weeks multidisciplinary assessment in the centre. Although he was quite young to be formally diagnosed he was obviously autistic so there wasn't any doubt surrounding his diagnosis from us or any professional who dealt with him.

 

Lynne

[trekster]

These are the first signs, with the benefit of hindsight, of things that caused difficulty/were not NT, as you asked.

 

DS1. Difficulties feeding as a newborn, although not as severe as his middle brother. Sensory issues and a tendency to be 'full on'. Diagnosis came at age 7. He's now 12.

 

DS2. Difficulties feeding as a newborn; related to low muscle tone and sensory issues. He was back in hospital at 10 days old after losing 25% of his bodyweight. Diagnosis came at age 4. He's now 10.

 

DS3. Incredibly 'full on' as soon as he was mobile, socially often 'over the top'. Diagnosis came this month, at age 7.

 

Lizzie x

 

Pleased to hear at least in some areas diagnosis happens at Primary school, i wouldn't want other kids to go undiagnosed and not catered for

due to a lack of diagnosis.

[KezT]

Pleased to hear at least in some areas diagnosis happens at Primary school, i wouldn't want other kids to go undiagnosed and not catered for

due to a lack of diagnosis.

 

Alexis - in N Somerset dx is often at primary school now. my son was dx'd at 7, despite his first school refusing to talk to or listen to me, and therefore having to change schools at age 6 to get the process started properly

[baranigirl]

With DP it all fell into place once I spoke to a friend whose DH had just been Dx with AS and OCD, his first 'sign' was an inability to control his moods / feelings once he stopped drinking alcohol although I have said for about 8yrs he has ADHD! So I knew there was something going on!

 

DD3 - have just posted about her now, on a different thread, but she was very active as a small baby, ate loads, slow to gain weight, late to wean, late to talk (went from nothing to full sentences at 2.5yrs) awful to toilet train, never had a solid poo til she was 2.5yrs, is still pooping in a nappy overnight and does not realise this causes her pain and discomfort if left, cannot understand why things can't happen, throws a strop if I go the wrong way in the car, even if it is the way we are meant to be going! She rarely sleeps more than 6 hours

 

Food is locked away, she can unpick locks to the medical cupboard at adult head height, climbs anything, yet won't jump down into something!

[Sammysnake]

I noticed immature gross motor skills first (from about a year old) but as Beth is my only child and I had no experience of other kids, I didn't know what was normal. At pre-school she would often get very loudly upset and be almost inconsolable and it was hard to see what was wrong. She had a very strong sense of personal body space when it came to other children and would scream the village down if a child touched her when she was not expecting it or if she was already tired. Tripping over herself, 'clumsy', avoiding snack time because she often spilled her drink, lying floppy on the floor and getting physically tired really quickly. All this made SENCo suspect dyspraxia but the Paediatrician said she was fine.

 

She would also shut down if there was too much going on emotionally (although I didn't understand why at the time). If she was ever told off she would fall asleep for three hours and I thought she was always ill at Christmas and when visitors came etc as she would fall asleep then too. She was very interested in one subject at a time and all of her many drawings would be focused on one TV programme for a year or two at a time - Blues Clues then Scooby Doo then reptiles. They would get into every discussion, story and drawing. Speech too - always very adult, detailed and complicated - each word used in the correct context and a strong need to make it perfect - returning to the beginning of a sentence and saying it all again if she had made 'a mistake' or not being able to stop if she was in the middle of saying something or reciting some TV dialogue etc.

 

I'd been speaking to each teacher at the beginning of each year telling them what strategies I felt helped her with certain things but always got the impression they felt there was nothing wrong. Middle of Year 3 I had a parents evening saying she was doing great apart from her very slow writing (something they had commented on all through school) but at the next parents evening the teacher suddenly said I think we need to have review meetings and put support in place for the future. Seemed a bit out of the blue! New teacher in Year 4 who is fantastic and clued up and suddenly strategies are in place, she is giving me an honest picture of my child's difficulties in class and playtimes which finally match up with what I had been expecting to hear all the way through, we're having proper reviews and she says she would like external advice and hopefully a diagnosis as she feels Beth will need support throughout primary and into secondary school! Within weeks she has a really indepth questionnaire sorted, SENCO has asked the paed to see her again and we have a diagnosis of AS which I had suspected for the last two years and her class teacher suspected too! (Paediatrician said sorry for missing it five years before but said there wasn't enough evidence then. However, he only met her for five minutes and didn't ask for any further info at the time). She is nearly 10 now.

 

Beth also didn't sleep through the night until she was three and we didn't get on with breast feeding. I don't know if that was anything to do with AS or if it was my fault. I had postnatal depression for two years but I don't know if it was caused by Beth not sleeping or if she didn't sleep because I was depressed and not coping and therefore letting her sleep in my arms during the day. Chicken and egg I guess. Now she sleeps fantastically well .

[Suze]

It quite striking how many have mentioned, difficulty in feeding and reflux...my son was the same also.He cried all the time , .One of the most odd things though was his preoccupation withe the vaccum cleaner, whenever it was on he would stop whatever he was doing with it and stare at it.As soon as he could crawl he found the vac in the cupboard and he became obsessed with it.He would crawl all over it and pat it and play with it for hours.As soon as he could walk he became obsessed with the lawn mowwer aswell , then tractors.He did,nt talk till quite late and his first word was tractor.As we lived on a rural lane tractors went by the house quite a lot and he spent all day stood on a box watching for them.He could hear one coming from miles away, and by the age of 4 knew every single type of tractor that had ever existed

[BusyLizzie100]

Pleased to hear at least in some areas diagnosis happens at Primary school, i wouldn't want other kids to go undiagnosed and not catered for

due to a lack of diagnosis.

 

Sadly, diagnosis doesn't always lead to support or being catered for. Our county feels very much like the Dark Ages still.

 

I have heard, also, that sometimes medical professionals are under pressure not to diagnose, as it puts pressure on already limited services - the more diagnoses there are, the more services are needed, but no budget (or willingness) to provide them.

 

Lizzie x

[NobbyNobbs]

my parents didn't think anything was wrong with me. in hindsight they say the obvious first sign was my refusal to feed. i never took more than 4oz, even at 9months old but this was put down to needing emergency surgery on my intestine when i was 10 months old.

[trekster]

Sadly, diagnosis doesn't always lead to support or being catered for. Our county feels very much like the Dark Ages still.

 

I have heard, also, that sometimes medical professionals are under pressure not to diagnose, as it puts pressure on already limited services - the more diagnoses there are, the more services are needed, but no budget (or willingness) to provide them.

 

Lizzie x

 

i hope the Autism Act will change this.

[BusyLizzie100]

i hope the Autism Act will change this.

 

Yes, me too! It might not turn out perfect but it's a step in the right direction, I hope.

 

Lizzie x

[chris54]

My son was diagnosed at about the age of 8. If I am honest we never gave Autism a thought until that point, it just never crossed our mind that the various problems he has/had had were anything to do being Autistic.

 

In retrospect you could say that he was showing signs right from when he was born, or even befor that.

 

It was a continuation of the school assessing his needs that lead to a multi disciplinary assessment which led to a diagnosis.

 

 

As for a diagnosis leading to support. Well I dont think it made any difference at school, at least to start with, his problems were just the same and needed the same support. It probably made a difference when he moved school/county as it sort of summarises our concerns/his needs but then even with a diagnosis every child is different and their needed will have to be assessed individually.

 

And as far as any support outside of education forget it, well we haven't forgot it but it is not forth coming so far.

Edited April 24, 2010 by chris54

[Fragster]

I have found this topic extremely interesting particularly as there are things people have mentioned that I had never thought of before. DS was only diagnosed in Feb and the catalyst to me admitting that L was not NT was when his year 2 teacher told us that he had self harmed at school because he was worried that he had been naughty at play time. With hindsight there was a lot that really should have clued me in earlier....especially when a colleague who has a son with autism was describing things his ds did and I was going on L does this too..he kept saying to me yes but not the same way as a nt boy and I said yes exactly the same as you have described

L used to rock and hit his head or scratch at himself and bite himself a lot as a toddler

He has cyclic obsessions the first of which was thomas and he also ussed to "play" by lining them all up and could tell you exactly who was who just from the face, he could recognise numbers from 14 months without fail because of his obsession.

L has no understanding of personal space and never gives any, he also can not give eye contact very well, especially if he is upset or frustrated. He is very sensitive to noise and smells.

He would often be in his own world and was a late talker although we were lead to believe that this was because he had glue ear and although he could hear even very low volume noises he wouldnt hear it as a clear sound but a noise. Incidentally it was a swooshing noise that got him sent to ENT and revealed the glue ear not him in any other way not seeming to be able to hear. Even before the grommits he could hear the smallest of noises!

 

I would say another experience that should have shouted it from the roof tops and also which still makes me angry was an incident at the pre-school. A little boy had been hurt but when he told the teacher who it was they said it couldnt have been him he wasnt near you L is was it him - the little boy (2 and a half) said yes. When L was questioned he said no - when I came to get him from the cm's she said that he had only stopped crying and banging his head 15 mins before I arrived and had been crying since about 2 - this meant he had been crying for over 3 hours. I confronted the play school who told me that ever since his "fav teacher left in april L has been unresponsive or reactive to all efforts by teachers even in a 1:1 situation, he just didnt want to be friendly and was a loner who sat in the book corner on his own or played with the trains. They knew that it was L who hit the child in question becuase he was nearhim when he cried and because he wouldnt look them in the eye when they were talking to him about hitting children." she then went on to say that I just have to come to terms with the fact that he wasn't as intellegent as I thought (he had regressed in development since starting the pre-school so I was always asking what he was doing) was a loner and a naughty spiteful child", needless to say he wasnt in school that day and he never went back. As a pre-school based in a primary school with an autism unit you would have thought that someone would have thought about all the signs (as there were others not related to that incident). The primary school luckily is absolutely excellent and as it was our local school and he was there anyway we have really landed on our feet with help and support

 

Reading through L also suffered with reflux and intolerances. My brother who is 10 (dx with aspergers at 7) didn't though.

 

x

edited as I put the wrong word

Edited April 24, 2010 by Fragster

[Martin Howe]

Sadly, diagnosis doesn't always lead to support or being catered for. Our county feels very much like the Dark Ages still.

There's no provision for aspergic adults here and I have a letter from the doctor to prove it. Nevermind the Dark Ages, East Anglia still seems rooted in the era of the Angles where health provision is concerned.

 

Anyway, back to the topic: I guess the first time I conciously knew that I was different from other children was at the local theatre watching a pantomime. Having been exposed to shows like Star Trek by the age of seven and on seeing the big bad monster appear, with everyone running around in terror like headless chickens, I asked mum why didn't the government give the soldiers lasers instead of halberds and er, well, just kill it.