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      Depression, Mental Health and Crisis Support   06/04/2017

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rag31

4 year old with ASD/AS? And other kids!!

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rag31   

Firstly, my husband has just had an assessment and been diagnosed with AS. This is after many years of us knowing something was going on, and three years of knowing it was probably AS. He has some of the traits strongly, some not too bad. He also has tourettes, as does his mum and sister. They all have voice clearing, and various facial/body tics.

 

The main reason for seeking the diagnosis was to shed light on our children. We have 4 children, though the eldest is from my previous marriage and is NT (and thus, teenage NT girl is utterly baffling to DH! LOL) But our others:

 

9yo girl was always considered very 'shy', she developed at a 'normal' pace - walking/talking etc. In infants at school her yr 1 and yr 2 teacher both said that there was something unusual about Ella. She was lovely, no problems, quietly got on with things but she had no specific friendships. If someone was friends with her she happily went along with it, but if not it didn't bother her. This is apparently very unusual for young girls. Then in yr 3 she was put into a very disruptive and noisy class and found it extremely upsetting. She cried every day because the children and teacher were always shouting. She has been home educated for just over a year and it really suits her. She still has no specific friendships, though socialises regularly with children of various ages. She also has all the signs of tourettes (throat clearing and regular facial and bodily tics).

 

 

My 8yo son has always seemed sociable and had friends so I had assumed there were no problems. However he always had strange rages where he'd glaze over and nothing could stop him, he'd be rigid and screaming sometimes. Moreso than 'normal' tantrums but not that often. He developmentally was quite late with sitting up/talking/walking etc but only a few months later than other kids and he developed normally. My dh has recently said that ds is just like he was at that age. He basically plays the joker, doing stupid things that other kids find funny and thus feels popular and has a bunch of children around him. However, he doesn't really have friends other than parent-imposed ones iykwim.

 

Then we get to the 4 yo! (sorry for the essay!) Sam as a baby couldn't be put down, he needed to be carried constantly - lucky as I had a sling and didn't mind. He couldn't eat any form of solid food til he was 18 months old as any lumps made him gag. He crawled and walked normally. His speech is very delayed, we have seen SALT who were pretty useless as we already did everything they would recommend at that age. Now at 4y 3m old he is starting to talk in sentances but they are the 'wrong' way round iykwim. Example - he will ask "this table what colour is it you think?" and things like that. 6 months ago, aged 3 he had a vocabulary of a handful of words and hadn't put 2 words together yet.

 

He has had major problems with transitions - until recently it has taken us 2 or 3 weeks to make the transition from one pair of shoes to the next, I've had to smuggle in new bigger clothes and made sure they are similar to the old ones so he doesn't notice, he refuses to come out of nappies, he will not happily stay with anyone apart from me and recently DH and so on.

 

I have had to give up work as he's so distressed by me leaving and I just couldn't handle seeing him so upset. Since I gave up work he's stopped biting his nails (he actually bit 2 nails off his fingers before) and is much happier and making developmental leaps.

 

He obsesses over programmes on TV. First it was Thomas, then a film called space buddies etc etc. During these obsessions which can be a few weeks or - with Thomas - years! he wants to watch the programme/film over and over again. he would watch them 5 or 6 times a day if we let him. He is also obsessed with trains, planes, automobiles :-) Not only Thomas but any train now. We have umpteen of those 'trainspotter' books that are just photographs of different trains.

 

Bearing in mind all of this - and apologies for the splurge - I am just considering now our next move. We have been told that 4 is too young for an assessment. Having looked at some of the assessments for kids it would be, he doesn't have the language skills. I don't know what he's imagining iykwim. However, I think it would be very useful to have a diagnosis - not only for help and support but also for telling people. Kids in the park keep asking why he doesn't talk, parents are asking why he's still in nappies etc. It would be so much easier to be able to tell them iykwim.

 

I would appreciate if anyone could tell me if their children have been/are similar to any of mine, how young their LO's were assessed and diagnosed, any advice or comment really.

 

Thanks,

Becky

xx

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cmuir   

Hi

 

4 isn't necessarily too young. My son was diagnosed at 4.5 with AS, though to me, it was obvious much earlier. Assessments/diagnoses tend to take a long time because there are generally a number of professionals involved in the assessment/diagnostic process. It's also very difficult for them to see a child how they normally present over say a 30 minute period, so again, that can be difficult. Also, they generally all have to be in agreement. Interestingly, during the course of my son's assessments, two specialists asked me about my husband - they basically clocked how he presented and particularly on the day when we were told my son did in fact have AS. I was howling (out of sheer relief at finally knowing what was up). Hubby on the other hand sat perfectly composed, showing no signs of attempting to console me, etc. My son's consultant advised that ASDs often run in families, yet often it's the children that are diagnosed first then the parent.

 

It took a long time to persuade my HV and GP that something wasn't right with my son - I was told to cut down my hours at work!!! I persisted though and insisted on a referral to a paediatrician. I kept a diary (despite CAMHS telling me it was a very negative thing to do! – on the contrary, I think it's very helpful, since you don't visit your GP and say you feel great do you?). I think it's a very good way of keeping an accurate account of what's happening on a day to day basis. So much can happen that it can be difficult to remember a month later/when attending appointments. I recorded things like how my son behaved at Christmas – he wouldn't touch wrapped presents and would pile them up behind the dining room table, though he'd show interest if toys weren't wrapped. Also, he would insist on walking the same route to school, walk down the stairs first, line cars up, watch same DVD over and over, etc. Anything that you pickup as perhaps not being what you'd consider the 'norm' is worth noting. If kiddo has a particularly bad day, think about environmental factors, think about whether he could have been tired, hungry or unwell. It's worth showing that whilst you perhaps have your suspicions, that even so, you're prepared to be open minded and unbiased about how you present your thoughts to professionals. Reports from nursery/school can also be helpful too. With us, we'd seen something like 9 different professionals and I had a pile of reports (19) before I finally cracked and said 'look, we've been seen by lots of different people, but are they the right people'. After 19 reports, we should have answers that point to something'. It was after a lucky break that I was given the name of a consultant – I pestered the poor woman's secretary and hey presto we finally saw her and a couple of months later, kiddo was diagnosed.

 

Best of luck. I'm a big believer in gut instinct – my heart and my head told me something wasn't right.

 

Caroline.

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pearl   

JP was assessed at 4, dx'd at 5. Don't know who told you it was too young, but that is rubbish. I believe there are tests for toddlers these days. Good luck.

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Lynden   

My son was formally diagnosed at 2 and 2 months, and was getting SALT/OT etc from 15 months onwards so they can be diagnosed young. He was fairly clear cut though, there was really no doubt that he was severely autistic.

 

Lynne x

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westie   

my eldest was first assessed at 3yrs, diagnosed 5yrs

my youngest was diagnosed with ASD at 2yrs 11mths so would say ask for assessment, and if poss. act before 5yrs, in our area hospital have multidisciplinary team at hospital who assess for all sorts (involves speech and language, physio, OT etc) whereas here after 5 they go to CAMHS who only deal with diagnosis ASD/ ADHD and its separate referrals then for S&L/ OT etc - which may take up more time!

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bluefish   

Hi, My son was assesed at 3.5 and dx was 2 months later( hfa)

It was his nursery that saw he was different and not me (although looking back now not sure why I had not noticed) He went to an assesment center and dx came after around 10 visits

 

Best of luck x

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a lot of areas wont consider assessing until the child has started school as until then developmental milestones are too fluid for the higher functioning end of the autistic spectrum. friendship patterns also aren't developed until this point which can impact social functioning assessments. i think they use school as a standardising thing. from that point on all children are exposed to the same influences/opportunities etc, so they can truly see when there are problems. before then a child who had been kept at home will have far less social skills than a child who has been in toddler groups/nurseries for example so its harder to tell what is a dysfunction and what is simply something underdeveloped through 'neglect'

 

we can't get an assessment for K until shes started school, but we make sure the Health Visitor is told of her antics regularly so that when the time comes all the information is on file. (we have at last count 5 social workers who have all independently said that she seems to be autistic, so we're pretty sure we're on the right track!)

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Sally44   

Some children are diagnosed earlier. It tends to be children who have more severe symptoms. Yet I would add that 'prognosis' is different for every child.

It is typical for concerns to be raised around age 3 as their peers continue to develop and ours remain on the same level eg. with nappies, absence or delay or disorder of speech, delayed motor problems which maybe down to sensory issues or dyspraxia etc.

 

I would ask your GP for a referal to a multi disciplinary team in your area that diagnoses for ASDs including Aspergers.

 

Questions were raised about my son when he started pre-school and they moved him from nursery to the new building. He would not settle with the change in environment, structure and staff. I went to the GP and he said that if there were problems it would be picked up at school. I asked the Health Visitor to see him and the private nursery refused and said there were no real problems. How I wished I had pushed for answers back then. But everyone was saying 'he's okay' and that is what I wanted to hear.

 

Six months after he started school I was called in, and it went from there. He saw a SALT who diagnosed echolalia and disordered speech. He mixed up sentences, didn't understand pronouns, repeated what I said or what he heard.

I was told by the SALT to expect a diagnosis of an ASD. But it took a further 18 months to get that. Then a further 2 years to get a Statement.

 

Your son will be due to start school soon. Unless you are going to home ed your son as well?? He will need the right supports and the right school environment before he starts, otherwise he is going to have a really negative experience.

 

If your son does not have good receptive (understanding) language and expressive language he is going to really struggle in school because it is all about learning by listening and understanding.

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Sally44   

I forgot to add that my son's speech was just 2-3 word combinations by age 3. Then we let him see his first Walt Disney DVD and his language exploded from that. He uses alot of language from TV/DVDs to make up his speech. It sounds like he is American, his tone of voice and accent is American. He uses American words like 'hey you guys'. But his speech really did explode from watching TV. Like your son he would watch the same one over and over. He would repeat the dialogue to himself, and he can re-run programmes and films in his head.

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justine1   

Your four year old sounds alot like Sam(six now,with AS dx) He also had to be carried around everwhere,very clingy,even had to take him to the loo and bathroom with me,he also loved being in a bouncy chair I would get cramp from rocking him :rolleyes: He also loved watching themetunes and certain films over and over.Saying catchphrases etc. Only his speech has always been advanced this wasnt a worry as his older brother was the same.However I knew he was different from early on.

 

It is hard to say with regards to the older two,I suppose it would depend on if their behaviour is affecting their progress either educational or social.I would recommend seeing your GP and getting advice and speaking to their school.

 

My four year old is also about to go through the assesment process,though he seems to be on the spectrum he is quite different to Sam.The most obvious is he is more clingy towards his father and he is more shy and he has speech problems.So it is not so easy best to always get professional advice.

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jo4themo   

N was almost 6 when she was diagnosed, but we knew she was most likely on the spectrum from just after her 5th birthday when I saw a boy on TV who had Aspergers and acted just like her! We knew that something wasn't quite right from the age of 4 on, and looking back she showed ASD symptoms from as young as 6 months.

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zenemu   

I'm not a parent, so I can't give much adivce in that respect. I was diagnosed with AS during my teens, but looking back it would have been fairly obvious to any consultant that I had that condition by the time I was five years old, had I been sent to one. However Autistic disorders are a usually very unique to the individual, everyone showing different traits, and some traits may not become apparent until your child is older.

 

I would recommend talking to your GP about your concerns and seeking a refferal to a consultant, if for no reason than to put your mind at peace and to give you some answers.

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