When did you know?

[HunkerMunker]

I'm not sure if this is an upsetting thing to be asking, so I hope it isn't!

I've been wondering for a while now whether autistic children are different as babies? I've heard people say that their children changed overnight after their vaccinations (this is NOT intended to be a contentious vax thread though!) - but were there any signs at all of what was to come before the vaccinations?

I'm just interested really - like I say, I'm sorry if this isn't the 'done thing' to ask - I hope people know me well enough by now to know I'm not being deliberately inflammatory here!

[Loui]

Hi, I'm an adult with Asperger's so this is all second hand from my mom, but she says I was very different (although she didn't know at the time as I was her first) I was very quiet and extremely well behaved, I hated physical contact and didn't like cuddles etc (you can imagine the impact that had on my poor mom)in fact if anyone other than a select few picked me up I'd scream myself sick - very popular baby I was, I was very late walking and never crawled at all - my mom claims she could have left me somewhere for a few hours and I wouldn't have moved when she came back! I was very self-contained and disliked contact with people in general. Also despite being TOO well behaved I was prone to fits of screaming if something scared me - so much that I'd go rigid and it took ages to calm me down - and I was scared of LOADS of things, brooms and brushes, rolled up carpet (don't ask!), spotted balls, reflections on the ceiling, balloons, the list goes on and on!! My mom says the most memorable one is when my dolls head came off - it took her 3 hours to calm me down after that one Obviously I'm at the higher-functioning end of the Autistic Spectrum but I hope this explained a bit - although as we're all different it only really tells you what I was like

[MrsFROSTgetful]

With Tom - DS! he was from day one a screaming,unconsolable baby- he refused to breastfeed then within weeks bottlefeed- so i was weaning him at 6 weeks.
He could not be calmed by cuddling- and due to the fact thaty he was so rigid and trying to support his head etc so young people comented on the fact that he must be bright
I went along with that for 4 years....believing intelligence was the culprit1
Also up to the age of 18mths he had such an awful cry- people would stop me to check if he was ok- as by his first month i had started to 'blinker' off so i appeared to ignore him- but when u know that NOTHING will stop them crying you do feel useless.

Then at nursery he was noted as unable to concentrate,distracted easily,hated getting hands messy- wouldn't join in with singing 'mummies'n' daddies' type games- nor want to share in group snack time- unwilling they said to try any foods.

At recption schhol age he kissed everyone- squeezaed them to show his love for them- and basicaklly scared all his friends away by age - no more parties etc.

He also continued to be unable to concentrate etc.

At 7 he was dx'd with ADHD and still takes methyphenidate(ritalin type drug) for this- he is 11 now- about to move on to secondary school

At 9 he was DX'd with Asperger's (commonly dx precedes this)

He NEVER liked puzzles or colouring...realsie now this was due to poor 'hand-eye co-ordiniation' and poor 'fine motor skills'....however was a mystery to me for years why he could manage to play his playstation...for hours on end with such poor motor/co-ordination skills- along with his inability to sit still at any other activity for more than 2 or 3 mins

I also have an 8 yr old qith AS too....he was totally different - so as i compared him to Tom - it wasn't till he was age 6 that i realised he had AS too. (he loved puzzles- & drawing the same picture over and over again...was obsessive about Thomas the Tank.... was described as extremely bright and a 'Mathematician' by school- and he has always been a 'black'n'white thinker...

I will stop here!!

(as DS3 looks like being as DS1 ...so at least he is only 5 and with pushing should get assessed/diagnosed well before DS1 was

You get very impatitient once you have 'gone through it once' and get frustrated at 'well meaning' doctors and teachers/parents who try to treassure you that nothing's wrong...it took me over 2 years to get the DX for DS2...as everyone (like i had ) compared him to DS1

[coppertop]

With hindsight I think that the signs were there from the very beginning with ds1. He absolutely refused to feed. By that I don't mean that he only wanted a little milk. I mean that he literally would not feed, either by breast or bottle. He spent time in Special Care being tube-fed as it was the only way to get milk into him. At about 3 days old he went into what I now realise was a shutdown. He slept constantly for 4 days in the SCBU. He was awake for no more than 5mins in every 24hrs. He recovered and we took him home. For the first few months he was a sleepless screaming nightmare. Our nights consisted of holding him for 20mins to get him to sleep, ds1 sleeping for 20mins and then screaming for another 20mins.

When the screaming period eventually passed ds1 turned into a placid, easygoing little baby who was quite happy to sit and watch the world go by. Lots of cheeky smiles and giggles. He still didn't sleep much but at least the awful screaming had gone.

At about 9-10 months I had a niggling feeling that something wasn't right but couldn't quite put my finger on what it was. I didn't know anything about pointing back then and as he was our first baby I didn't find it odd that he didn't babble. By 15mths I was asking the HV about his hearing as he never answered to his name. She assured me that as he'd passed 2 hearing tests he was fine. I was concerned about his lack of speech but everyone kept telling me that it would happen when he was ready. It was only when I started to look for reasons why he wasn't talking that I found references to autism and then it all clicked into place. It was like reading a book about ds1.

Ds2 was a lot trickier. I was looking out for signs right from the beginning but there weren't any that I could see. He had a few traits but probably no more than any other baby. By about 4 months I was convinced that he was NT. He didn't need much sleep but this wasn't a huge problem as we were already up half the night with ds1. Alarm bells started to ring when he went from no babbling at all to having perfect words - which promptly disappeared. I saw him with his finger in a point at 12 months and thought "Yipppeee! He's okay!" He didn't do it again. By 14 months I was still on the ishe/isn't he rollercoaster but felt concerned enough to mention it to ds1's portage worker. She observed ds2 at home and agreed that he should see the Paed. We have a preliminary diagnosis but it won't be official until he is re-assessed next year. I'm now certain that he is on the spectrum.

[MrsFROSTgetful]

what u said about the portage working agreeing with u makes all the difference- as he was then 'noticed' so much sooner.

Eith Leigh it was noted at a developemental check that he liked trains ...and use to lie on the floor slowly wheeling them along...lookuing at the wheels....
and this was the only 'lining up he did'....which was put down to the 'nature of trains actually lining up in real life' so nothing odd there....then at his 3yr check the HV was mildly concerned with his speech...but by age 41/2 we had worked so hard on it that the SALT referal was cancelled...this for me was in hindsite the worst thing to have happened...but at the time i STILL just thought he was a happy,contented child who loved trains. One day he was lead on the floor and he was doing his usual 'train talking dialogue..."Hullo Thomas- You are blue....Hullo henry you are green....etc" ) and i did start to feel he was maybe 'gifted' as he could repeat the dialogue from any show....and if he saw aclip on t.v for TtheT he's rush and find exactly the video we had with that episode on....my most memorable bit is when he was always saying "oh! Oh! Oh! Said the Trucks....we want a Proper engine...not a red monster" (referring to james (ofcourse).....and one day he had a video on and i heard that exact dialogue...that was a strange uncanny moment.

Also ( in my experience) us mums become just as knowledgeble about our kids 'SPECIAL interesT'!!!

Finally another 'oddity' looking back (as was not odd to me at the time) was that as soon as he could sit up he was fascinated with putting things in and out of a metal SMASH POTATO TIN....and gradually ...without realising it...this became the only way we could go out shopping etc...that being if he took his tin with trains in it!!!...then we could plonk him anywhere and people coiuldn't get over how well behaved he was.....his 'not so pleasant behaviours' onlt came to light when he moved on to nursery full time at age 3 yrs 2 months.

He could appear to be sharing alongside the other kids playing with the brio....but god help anyone who picked up what appeared to be 1 of several identicle trains/trucks...as he would fight to get to the train box first and fish out exactly the same toys every day...and couldn't tolerate anyone driving down the track the wrong way etc....but still i didn't really think of autism!!! ..... it only really hit home when burgerking changed theyr chicken kids meal from nuggets to 'balls.'...on the same visit that the play area had been removed.....and then a few weeks later he moved up fron y1 to yr2 and the lunch trolley was not where it used to be...his coat peg was moved ...etc (Reception/yr1 had been the same class and teacher)..... and clearly this was the start of 'life as we know it'!!!

[Jimjams]

ds1 regressed following an illness at 12 months. His personality didn't change though. He was very laid back, very, very smily (used to be commmented on). having said that so was ds2. The only difference was that ds1 was late to reach out and reached physical milestones at the late end of normal (reached social milestones earlier than ds2). he also always liked looking at patterns, light and ceilings.

I think the late reaching out is significant, but I don't know whether he was autistic then, or whether he was just a bit slow and therefore easier to knock off course. I do know that he regressed a lot at 12 months.

[Jimjams]

following his regression he became much more affected by sensory issues (wouldn't put feet on grass for example).

I'm watchign ds3 like a hawk. So far I don't think he's autistic as he isn't too startly, but equally isn';t too passive. is pretty content (eek) but does notice if someone is out of the room and prefers company. Is interested in lights etc but not for hours at a time. is beginning to swipe things.

[MrsFROSTgetful]

Charlotte Church said one of her sons regressed with a major crash.

JJ- is DS2 ASD aswell as DS1?

I certainly feel an expert now 'diagnosing ds3'....whereas with ds2 i still missed what i see now as obvious pointers.

[WideWebWitch]

This is a very interesting thread, thanks all of you for sharing your experiences. In case she doesn't see this, Jimjam's ds2 is NT MrsFrostgetful (hope she doesn't mind me answering for her!)

[MrsFROSTgetful]

thanks.....i wasn't on here much till february ...and back before christmas i was sure he was NT...but this thread confused me!

Thanks WWW

[Jimjams]

thanks www. No MrsF DS2 is about as NT as they come (although he\s the only person in the hosue who has ever lined up cars )

[Jimjams]

`MRs F I think you mean Charlotte Moore (Charlotte Church is the Richard and Judy find- the singer)

[MrsFROSTgetful]

ooops!!!!

I am bl**dy U.S at the moment....possible i have a low thyroid prob- being tested next week!

Apparently a symtom is 'mental slowness'....that's me!

[MrsFROSTgetful]

Yes JJ you start tio view the ASD as 'Normal' and the fact that one child doesn't do the ASD thing is odd!!!

[coppertop]

LOL at "Charlotte Church"! It's the sort of thing I'd do.

[Jimjams]

NT kids are weird. DH and I often stand staring at ds2 in amazement. Mind you I think auti kids are weirder

[coppertop]

Watching NT children at ds2's toddler group is like watching a whole new species. I can't get over the novelty of seeing even the very young toddlers fighting for their mother's attention. All that "Don't sit there talking, mummy. Look at ME instead!" seems quite extraordinary to me.

[maggiems]

Hi, am a mum to a ds aged 3 years and 8 months. At 13 months he was sent for speech and occ therapy as he had a slightly immature pincer grip and he had not started to do things like wave and point. However he could respond to his name and I remember him enjoying teasing me . In hindsight I think they were keeping an eye on him with a view to ruling out autism . He was discharged at 2 having met his speech and other milestones along the way, did all the things like pointing and waving etc . He is now a chatty 3 year old , speaking in long sentances and has what I consider to be good communication skills . A few things jumped out at me when reading your post which causes me to panic again. My DS also likes thomas the tank and likes looking at them going round on his track. He doesn’t spend a huge amount of time on them but just recently, following getting a present of a track and a battery operated Thomas and Bertie , he is quite keen on them. He also have a video and does recite bits of them when playing with his trains . I never took much notice as I thought of it as a bit like reciting nursery rhymes which he is good at and does all the actions for. As a baby he didn’t like certain songs but he grew out of it , although still comments on some loud noises but doesn’t or never did go beserk . He was a fairly content baby and has never had a problem wih food. He also has never been obsessive about having to have things a certain way and is happy to share with his sister and brother. I know if I told anyone I was writing this they would think I was bananas but that’s mothers for you. I was also a bit concerned when I saw how late some children were diagnosed .Someone once said to me it was very unusual to be diagnosed with autism after aged 3 apart from aspergers which can happen later. Just curious to know if you think that anyone with good , appropriate speech, complete with verbs, past tense, prepositions , pronouns at this age could be diagnosed with autism and would it have been quite obvious to a paediatrician,speech and occ therapist at 2 and a half if all was not right. I remember my DH joined the final session in the middle of it and I remember the paed commenting on the fact that my DS started to tell him about what he was doing and gesturing towards the toys. I got the feeling that she was happy with his communication skills but the worry lingers especially when I read your messages. Thanks for reading .

[binkie]

maggiems, hello - I sympathise with your worries, and the special kind of limbo state you're in. I started a thread about my ds last year (here ) asking much the same kind of questions, and it might just be helpful to you.

My ds (nearly 6 now) has various of the traits mentioned below - he was a bit too passive, a bit too stare-y, and at things rather than people, as a baby; nursery worried about his distractibility and how he didn't follow the group; he's got slightly odd speech - tangled syntax the most noticeable bit; and he definitely has slightly more sensory issues than my dd - though I think in a non-asd sort of way - basically, he's a bit of a nose-picker, which is not outside social norms!

But on the other hand he was reaching out for things at ten weeks, and I distinctly remember him at around 20 months trying to tell me his new sister was crying in another room by pointing that way and saying "wa-wa-wa", imitating her. As the ed psych said to us, "it's only a problem if it's a problem", and at the moment my ds is so much not a problem. What about you? - are you worried about your ds in himself, or, rather, about where he "belongs" in the spectrum of children?

[Jimjams]

he doesn't sound remotely autistic to me maggiems. By 3 autistic children are beginning to stand out- even children who are high functioning are generally having a terrible time.

My normally developing 2 year old loves thomas, he dreams of thomas, plays with him as much as possible, is obsessed with him. Far more intt him than autistic ds1. ds2s not remotely autistic though.

[coppertop]

He sounds okay to me too. Lots of non-autistic children love Thomas and love the train-sets etc. At 3yrs 8mths ds1 wouldn't have been able to do half the things that your ds is doing. He still mixes up things like him/her, he/she, his/hers etc and has only started to refer to himself as "I" over the past 6 months or so (he will be 5 in a couple of months). He still mixes up past tenses, eg "runned" "buyed" etc but I'm not sure how much of it is age-related.

[KarenThirl]

Well, I guess I can join this thread now that I've got a diagnosis!

J had a difficult delivery so I guess I was (to a degree) always aware that there could be problems resulting from that, though I don't remember voicing them aloud. Second stage delivery took four hours (as opposed to the then recommended maximum of half an hour), he was born with his cord round his neck and took three minutes to get breathing. Very worrying. Also had to be delivered by ventouse, hence the Mr Whippey shaped head he had for the first two days.

As a baby he wouldn't be cuddled so you couldn't rock him to sleep unless he was very tired. He was very physically active and always climbing.

He ate everything that was offered to him until he had the MMR at 15 months, then immediately became a fussy eater with most foods dropping out of his repertoire completely over the next few months. He didn't eat vegetables again till he was nearly six.

Can't remember any other obvious signs - I'm still a bit shell-shocked at yesterday's diagnosis and haven't had a chance to be retrospective yet.

[maggiems]

Jimjams, thanks for your response. Well there is no way on earth that you could describe my DS as having a terrible time. He is a very happy chap. He is a twin and I think DS1 is such a completely different child, very mature for his years that i find it hard not to compare. This combined with the fact that he was referred so early on has always made me a bit paranoid. Congrats on your new baby by the way.

Binkie, thank you for the inclusion of your old thread For some reason I have been unable to read it.However I looked at the archives and I think its one you wrote in march 04. I'm not really sure why I am worried , its just a niggling feeling based on very little. I just have this fear about him going to school and teachers saying hes not able to keep up , although I really have no real basis for this.The posts in your thread were very interesting especially the one where you described the reasons why your child was not on the AS spectrum. All of those points would relate to my DS too so hopefully i can try to put it to the back of my mind. Although you were told your child was not AS do you still think he is,do you think hes got something else or have you accepted that hes fine?
Coppertop thanks for your response too. When I said that my DS uses past tenses he sometimes gets them wrong, he said I woked this morning but I imagine that its an age thing. Also he is inclined to use he for she sometimes, although he will say She is for ladies when asked. Sometimes when I say my DS does something i look at what ive said afterwards and think, oh he doesnt do it all the time!Maggie

[binkie]

maggiems, in answer to your question I have to admit I just don't know. I completely realise I am not dealing with the serious issues that other people have with their children, but at the same time no-one can overlook that ds is an odd bird - maybe he is just at one end of a NT spectrum, but maybe he does have "something" that isn't yet recognised. As for AS, if it is that, at the moment it would be such a bizarrely mild presentation it sort of devalues what other people are facing. I might revisit if things get worse when he's older.

Since I've done a bit of pursuing diagnosis, and can't blame myself for not trying to investigate, my day to day approach now is to deal with problems as & when they arise, and try (not very successfully) not to speculate.

Do look around - there are quite a few other "limbo mums" on here!

[maggiems]

Binkie,I know what you mean about devaluing others problems. I felt really guilty about feeling worried about something that probably doesnt exist given that some people have real problems and what makes me feel even worse is that people who do have problems are really helpful.maggiems