Looking back for 'signs' of Autism

[mrsforgetful]

We have our long awaited assessment next week- Me,Husband,ds1,2,and 3. Hoping ds2's 'behaviour' will be recognised as autistic and that we will get some kind of referal out of this-so........

over the next few days i will post anything i need to clarify here so that when i'm in that meeting i am 'speaking the right language'

For me- forgeting the crying and hate of milk that ds1 and 2 did fom day one...there are a few things which are 'unique' to ds2.

from very early on i used to leave him in front of the t.v watching 'pingu'- he would stare motionless at the screen- only crying when the tape finished. (meanwhile i tidied up etc) People critised me for not interacting with him - but i REALLY believed he was HAPPIER watching pingu.
??? My view then was he liked the black/white image of pingu and the noises the penquins made-
NOW...i believe it showed his lack of need to be talked to/cuddled/played with- and love of sameness....though different episodes...the screen was full of penguins....and the same noises.

As he grew and could sit up he would sit for hours with a 'smash potatoe' tin - puting things in taking them out- over and over again.
???Then- saw this as early counting
NOW....as it 'developed' into taking the tin everywhere- i see it as both repetitive play and routine

At some time around 12-18 months- he had a 2 month cluster of fits- these would come 'out of the blue' and were not 'febrile convoltions' he would be walking along - then just drop down- his lips would go blue and he'd go cold- he'd lie motionless- it was frightning- he was seen by a paed- and without 'testing ' he said it was to do with his brain developing faster than his body could accomodate- so it caused some kind of overload of ' signals'- that was my understanding anyway- and sure enough soon after he had a major growth spurt- and has not had a fit since- so feel the paed was right to not look into epilepsy (which is what i worried was wrong)

From birth he was prone to severe constipation- and once weane di was worried as his nappies contained undigested food,and would often resemble exactly what he'd ate the last meal- so i felt food was passing through him too fast- my nan had crohns disease- so i then started to think he had that- he again was seen by another paed- and again no further action taken- his weight and height were fine- TODAY he still gets bowel problems- he is constipated ...and i realise there is the 'link' between diet and Autism...so i look back on ds1 and 2 hating milk with interest (caesin) and even more so when i found that DH was fed orange juice (!!!! .... 45 years ago!!!!!!)DS2 has such a restricted diet that it scares me to remove whole food groups- and as mentioned before he now LOVES his extremely milky cups of tea...and i'm also aware that its likely he 'craves' the things that he is allergic to.

Around 2 he began to play soley with brio trains- then Thomas the Tank hit us with force- he is now 7 and refuses to watch it etc- but up to 5 he was 100% fixed on it. Too much to mention again here....but playwise he would appear to 'interact' with nursey peers- however he knew every truck/train in some amazing way so that if he ended up with what appeared to be an identical truck but it was the 'wrong' one then he would scream- this caused many probs at nursey as to them he was 'quarelling over 2 identical things' - but looking back i can see that somehow he knew the difference.

Then from 4- counted everything,very 'exact' about time and colours, hated people 'braking promises' ....really this was hating routines being changed or activities being ended- had to have hoody jumpers as he had to wear a hood at all time- and the 'food' difficulties became bad enough for me to realise that he was not just a faddy eater as others thought .

i know the list of memories is endless -but one last one is that wen they dug up our town to lay t.v cables- he used to follow the exact routet they took along paths- anyone in his way had to move- he would scare me to death as sometimes they dug right to a corner of a road- and he would follow it right to the kerb then take the turning and follow it round the corner.

mrsf, what a good idea getting it all down like this so that you have it straight by next week.

One think I would say, I have Crohn's and it really doesn't come out looking like it went in IYKWIM! More like liquid/water. Just thought I would give you that info in case it helped xx

I just wanted to say good luck. I know its a bit daunting and you and a few others have helped me through a similar experience.
How can you sum up 7 years of worry in a 10 minute appointment! Why don't you take notes in like I did, you would be kicking yourself if you forgot anything.
I hope you and your ds get the answer you were hoping for, fingers crossed.

I dont have a diagnosis for my dd(6), but all of that stuff sounds like a day in the life of us at somepoint or another! We are on a waiting list, but then we have been for 14 months now. Good Luck Mrs F, hope you get referred somewhere or other!

THankyou MaryZ- yes it is I!!!! You really helped on that 'need to win thread' and i have adapted it to many situations now!If ds2 does demonstrate any 'behaviours' i am going to openly tell the person assessing us that 'This is how i deal with this type of behaviour' as i want them to know that like you said he would be tatally different if i 'did it different' or he had another mum.I am also keeping a audio tape diary from tommorrow- i will leave a tape recording and simply keep truring it over every time it fills a side 'until' i get 'something good' that shows his 'reactions' well- i will carry it around- as it will prove how often i have to 'intervene' etc.
Any ideas what i can tell the boys we are going for...mind you for example ds3 is the only one that has noticed a note on the calender about it and asked what it is- i said it's a doctor appt at the same place we go for ds1- he accepted that- is that all i need to say- i don't want to encourage any 'false' behaviour- the last time i took all 3 there for ds1's routine medical - all hell broke lose- which had the paed beginning to agree about ASD for ds2- then she saw him at school and decided it was 'complex' so involed this 'child/family therapy team'

Bekki- we've actually been alocated a 60-90 minute slot...so am glad that it's not the usual gp type appt!

Countess- thax for the info- I appreciate that! I read my post agin and realised how 'yuck' it was and ds2 would hate me talking like that about him!

charliecat- do you think your ds is autistic?

i 'prepare' dd1 for her appointments the night b4. i tell where we are going and why. if i just took her she would have a barny when we got there. she understands pretty well for an almost 4year old. she actuallt liked her doc the other day as he was 'funny'.

Definitely agree with Maryz's idea about writing down how you intervene/manage ds2's behaviour. I would also add a list of different things that you've had to work on with him, eg turn-taking, other people not being able to read his mind etc. During ds1's case conference, the SENCO had mentioned a couple of things that she thought ds1 could do. Straightaway the Paed turned to me and asked if that was something ds1 had always been able to do or was it something we'd been working on at home. So obviously some professionals will be able to recognise 'learned' behaviour but others won't. (Then again this is advice from someone who literally forgot her own name during the assessment/case conference! In my defence it was the one thing I hadn't thought to write down in advance! )

Mrs F I think shes got AS, this is for a number of reasons, things like me drawing some chalk letters and pictures out in the garden one day and saying a is for annie b is for brendon d is for daffodil etc from A-Z and us never mentioning again till the next summer and she remembered all the alphabet with the same things id drawn once and said, once.That was when she was 2 and a half-she recalled it all when she was 3 and a half.
Cant cope with change, didnt socialise at mursery at all, walks round at school now with this smile stuck to her face still not speaking but it makes her more approachable to others so she has "friends".
Cant funtion properly after school sometimes, i did think she was going to have a nervous breakdown when she first started school.
Everything has its place, nothing can be wrong, people are always corrected.
She was trying the other night to be nice and sociable to her Auntie and my sis was saying "So who did you have lunch with today?" and my dd was answering saying "5 + 5 is 10, 10 + 10 is 20"...like that was the right answer???!!!! Is that AS like?
Usually she doesnt bother trying to socialise with anyone, but i think because my sis had said she was interested in her Barbie Playstation game dd thought she could/should make and effort??!!
Oh and temper tantrums about nothing from about 9 months old. But looking back maybe she had irritating clothes on? Would not eat and still reaches at certain smells. Has a wider range of food now thankfully. Enough to get by on. Runny poos always, never solid.
Hmmmm, and we have had a pre assesment, and the lovely lady there said she probably did have AS but i did a fine job with her and to keep up the good work.
At her pre assesment she behaved wonderfully, no screaming tantrums there or course, and i thought that the next time we had an appointment i wouldnt tell her, wouldnt prepare her so we would her her normal reaction to going somewhere without warning, maybe thats an idea for you?
Wow what a post! Sorry for rambling!

charliecat- the bit you said about the pre-assessment- and how you managed so well- and keep up the good work....i bet that made you mad! It's great to be praisedbut.... i think the specialists forget that we have to constantly be on our toes incase 'something rocks the boat' and how hard we have to work at planning even the most simple of things-so though they mean well- i think most parents of a disabled child would rather have the 'label'- and then it's up to them what they do with the label. For me- access to the local Autism unit for holiday play schemes would be great.

another 'funny' memoir-

we were on holiday in norfolk- and we were on a very straigt road- i saw a windmill in the distance and pointed it out- well ds1 and 2 could not see it..... i tried everything to get them to follow my pointing- yet neither could see it till we were really close....we knew their eyes were ok- so we've just lauged about it since....then after reading posts on here i realised the reason was something very autistic- and can identify with it from when they were very young- and even though ds1 is incredibly verbal...he still pulls my arm to show me something rather than point- this is only a problem in shops as he's almost my height and can catch me unawares when i'm shopping...i've nearly been pulled over.
with ds2 i used to have to literally steer his head to look at something- the outreach team say they teach kids to imagine a string to the object - and they start with objects which the child holds first then it is placed close by- they then move it further away- and then put it somewhere the child can't see- then point it to them

I came out feeling drained and after being told how long it would be until i got another appointment to see someone i was glad i could read books and understand what i was dealing with. Why can you not get access to the holiday playscheme? Or will answering just enrage you???!!

i wonder if dd2 is sometimes on the spectrum.

they are charity funded and only have room for 20 kids- it is the only specialist \Autistic scheme around her- there is a sports based one but it's for general special needs- this scheme is brilliant as ds1 has been- they basically do arts crafts and music- and because they deal souly with ASD they understand the way the kids CANNOT do certain activities- ds1 hates 'messy' stuff so they helped him to get a 'bit' messy ...and they finished his pottery off- he then was able to still paint it and bring it home!!
They offer places to diagnosed children only (and places are offerred to children who attend school there too) in our case ds1 was 'squeezed' in last year as they had extra lottery funding- and due to the kindness of the lady who runs it she has agreed to let ds2 attend this easter- as she has now met him and though she cannot say he is autistic- i was 'over the moon' when she said he would 'fit in well'....however this is only becasue ds1 goes and she has extra 'staff/helpers' this easter. I am getting involved with the Autistic Outreach Parent's Group- so hope to 'fight' this one even if we don't get a DX yet- i can actually imaging ds2 getting sent to that school too- so there may be no fight needed- trouble is it's not just about 'funding'- i'd willingly pay £25 to cover the 5 hours he would go- they charge £5 ...but it's more about 'qualified' staff ratio to children- and even me offering to help wouldn't solve this- as i am not trained!

Lol Mrs F, not trained at all are you??!!!! My dd has surprised me today as its the first time ever that shes told me theres something wrong with her, she said her head was sore. So i gave her some calpol and a couple of hours later she was feeling better, but up until now, even with hideous high temperatures and ear infections shes never said she felt ill or anything.
I dont think they even have schemes like that here..people probably move out of the area to find somewhere with help like that!!!!
Why do you think that Misdee?

posted it on another thread. maybe she's just a bit odd like me.

Which thread so i can go and have a read please

behaviour/devolpment

normal behaviour for 17month old. sorry was watching dh play divine divinity so i can figure how not to die when i finally get a go.

MrsF, just reading the bit in your first post about the "cluster of fits". I don't know a lot about epilepsy but the Paed's view that it was his brain developing faster than his body sounds a bit of a strange thing for a professional to say. I'm not saying he was wrong but it reminds me of how I described my son who screamed and screamed as a baby, I came to describe it as "he wasn't cognitively/mentally ready to be born" and couldn't handle the big world. Kind of similar ideas? I just thought, "well, babies scream and that's the way it is" but I now know that it was beyond normal, even for a screamy baby. We were told he had "colic" alhough one good Dr did comment that colic is not specifically related to wind or gut problems, but is a word that describes a set of observed unusual behaviours, sound familiar? Just like the big "A" word! I'm sure lots of babies' colic is wind-related but ours was too severe to be explained that way. I also remember when he was quite young, someone held a toy with beads inside over his face and tilted it, he didn't follow the beads at all and I was quite embarrassed. Then there was the rocking, going cross eyed, zero eye contact, never stopped crying if you picked him up or comforted him. THen he became quite passive which also seems quite typical of ASD, lots of people I know thoguht their ASD kids were great as babies because they were easy, too easy! Anyway, sorry I can't shed any real light for you on the "fits". As well as disordered development, maybe these fits could be due to that sensory need for being able to feel your own body, get feedback from the muscles and limbs etc???????

Ds1 also went from screaming 'colicky' baby to a passive little angel. We also heard the "All babies scream" line but it really was a different kind of scream to other babies. He then went to the other extreme and very rarely cried, even when he began walking and fell over. Of course it all makes sense to us now.

Thanks for trying!!! I've had a massive tidy up today -sorting through loads of ds2's art work- up to 5 he only drew trains- now evry picture has a house on ot- usually on it's own- but will 'inappropriately' add a house in most pictures he does.also for the last week or so he has began to wring his hands constantly- unless he's using them-If i had to describe him in one sentance i would say

DS1 is a happy and content child as long as he is left alone,can eat chocolate spread sandwhiches at every meal and never has to stop whatever he is doing

he is 'thrown' by eating ,sudden changes to routines/activities,smells,loud noises/music,toys breaking etc
and is articulate in speech-and speaks as he sees...very black and white in thought- and as the school said....no empathy ....yet despite all this we have to 'demonstrate' this to the 'right' person before i get listened to

MrsF - was the assessment this week or next week?

It's on monday @11am.....and i am so scared!