worries about autism

[Saker]

I am worried about the development of my second son so have been reading some of the threads on autism on this site and that has worried me some more. I would really appreciate it if some of you with experience of this condition could advise me as it seems that a lot of the information on the web is too stereotyped and doesn't correspond to the real picture of a child with autistic tendencies.

Ds2 has had motor difficulties since he was a baby. He sat up late and crawled at 1year and walked around 17months. He still walks with a very unsteady gait and struggles with stairs and can't begin to jump although he can climb okay. He also has clumsy fine motor skills and seems to have problems with visual perception - for example he is now 2y 9 months but really struggles with basic shape sorting. His
language skills have been slow to come on. He talks quite a lot now in sentences and has a big vocabulary but his articulation isn't very clear so he can be hard to understand. He is being seen by a paedriatician and was seen by the
physiotherapist and OT who discharged him and seemed to suggest he would grow out of it. Uptil now my feeling was that he probably has dyspraxia, but since reading some of the threads on here I am wondering about autism as well because he does have some strange behaviours.

Things that worry me:

• he pointed late - I kept a record of both my children's development and at 18 months I wrote for ds2 - "rarely points at pictures". And at 20months I wrote "tends to use his whole hand to point". However he does point at pictures in books now using his index finger and he does tell you when he sees things of interest, although he doesn't always point. I wondered if his motor skill problems made it harder for him to point and track.

• he has started repeating phrases sometimes like
  "That's naughty", "use your spoon"; he usually uses them in appropriate context but it seems a bit like echolalia

• he runs off when we are out as fast as his legs will carry him; I couldn't trust him to walk on the pavement or avoid anything dangerous even when I tell him

• he lies down flat on his tummy on the floor whenever we go somewhere new or somewhere he is unsure of. He doesn't have a tantrum or anything but just lies there until I pull him up and then we carry on

• we don't really have very good two-way conversations sometimes I feel like he is just saying what he has learned I want to hear. For example a while back when I picked him up from nursery, I would say "did you have a sleep today" and he always replied "in the pushchair, cried when I woke up, Sally gave me a cuddle". However since he has stopped having sleeps he doesn't say that anymore even if I ask him if he has had a sleep so he does seem to put it into some sort of context.

• he has never asked me the name of an object - never says "What's that?" although does ask for things like a drink or a biscuit

• suddenly seems to get irrational fears like the last few days has been hysterical about getting in the bath. Eventually got him to stay in by playing games with toy animals but every now and then suddenly panicks again. Previously loved his bath.

I know this all sounds quite bad but on the positive side:

• he seems to play quite well - he has never lined things up, banged or spun things etc
  He puts his trains on the track and pushes them round, he plays with his plastic animals giving them food and drinks and just recently making them say basic things like "I want a drink"; He feeds and baths his doll. However it doesn't often seem to branch out into ideas that I haven't played with him before. He likes pretending to be a monkey or a lion etc

• he loves stories and is always hungry for new books and stories

• he like Mog from the Judith Kerr books and recently has been very keen on hearing stories that I make up about when Mog came to nursery or Mog played at Nana's house with him etc. Ds1 did this and is very imaginative, advanced with speech and expressive.

• first words were mostly social like people's names, hello, goodbye etc - don't know if that means anything.

• understands a joke - like his dad says "I don't want anyone to say banana" - he stands up and shouts it immediately - much laughter - again I don't know if this of relevance

• doesn't drag me by the hand to get things/ show things although does bring things to me that he wants me to do

oh and is very affectionate and cuddly but I gather this means nothing

Anyway sorry this has gone much too long and I am at work - daren't do it at home - dh says I spend too much time on the internet worrying myself sick about him.

I would appreciate any advice

Many thanks

If you are worried about vision definitely get referred to an opthamologist or similar, probably at your local hospital. These tests do need some co-operation but the equipment does the testing, its not a matter of opinion. You have to put drops in the child's eyes sometime before the tests though which can be tricky. There are also still tests (some other vision prof that I can't remember the name of exactly)where they hold up a picture at a distance and ask the child to indicate which picture it is from a set of say, 4 on a card. The ones at our local hospital are very patient and understanding and also get us through quickly and let us jump the queue! BUT also think you should pursue other lines of investigation at the same time such as Dev Paed, Child Dev Team etc.

when u say point, do u mean one finger pointing, or a generla point with a hand?

If you have any concerns about his vision or even just want to rule out eye problems then I would try for a referral as Davros suggested. The wait to see a child dev. Paed is so long that it can't hurt to get on the waiting list for the full assessment sooner rather than later.

misdee

He sort of one finger points - sometimes he does it well especially to something concrete like a picture in a book. Sometimes he doesn't close the rest of his hand down properly although he sort of sticks out one finger more. Sometimes in a book he uses his thumb to point with instead of his index finger.

Can anyone tell me why autistic children don't point?

Is it because they don't realise that you can't automatically know what they are looking at or is because of a lack of desire to show you something?

Or is it not known?

The important thing saker is that the index finger is used. Never quite sure why it is so important it is used- but it's something that is mentioned a lot. Pointing is an indicator of joint attention, which as I understand it is important in langage and social development. The most important type of pointing is protodeclarative pointing - which basically means pointing out something of interest. For example this morning my 2 year old pointed at a plane and said "dog" (autie mabel- cbeebies). Autistic children can point but often it is late to develop- my eldest son did his first protodeclarative point at 2 and 2 months- when he pointed at a chicken and said "deedan", but now age 5 he still doesn't point very much (which considering he can't talk makes life difficult), and often he either uses his whole hand, or he points in copmpletely the wrong direction. (sometimes he's even stand if front of the object he wants (with
his back to it) and point in front of him. He finds pointing to things in a book easier but will often just pace his hand on the picture rather than use his index finger.

Being able to follow a point is important as well- as again its an indicator of shared attention. DS2 still cannot follow a point at all.

if you type protodeclarative pointing, shared attention, aautism into google- you will get a lot of information.

Pointing is a good sign of langauge development and I think if it is absent at 18 months then a child needs to be properly assessed. In an assessment of the reliability of the chat test all the children who failed on pointing at 18 months had problems with their langauge development. It does not automatically indicate autism, but it needs to be followed up.

Have you done the chat test? It is very good at picking up children who are at risk of developing autism.

oh don't worry about the hand being closed saker- young children often use the index finger whilst pointing not completely closing the hand.

The thinig to remember as well is that no-one is going to dx autism on the basis of poiting, it's just a red flag- if its missing more assessment needs to be carried out. In my ds1's case it was his main indicator of something being a problem, but it was never taken seriously enough.

Jimjams, thanks for the response

I didn't know if there was a lot of point doing the CHAT test at his age now (2y 9 months) and I can't remember for sure how he would have got on at 18months. He was doing some pointing and I think he used to pretend to be on the phone but I don't think he would have made a cup of tea. But then he could hardly walk so things like pretending to pour would have been and still are a bit beyond his physical ability.

At his age now he will point if you ask him to show you something, but is definitely better if it's near rather than far. He does do pretend things like make a cup of tea - but always it's so much more verbal than physical. So the other day he pretended the top of the slide was his house and asked me if I wanted a piece of cake. So I said yes please and held out my hand for the pretend cake. My older son would have pretended to hand me the cake at the same age but ds2 doesn't really seem to think to do that or only very vaguely. And it's a bit the same with pointing - he will say from the back of the car "There's a yellow tractor" but he doesn't always point at the same time.

Hi, My ds of just 2 years seems to be progressing 'normally' but I think I am becoming paranoid about autism! I noticed today at Tumbletots that it was only ds doing the arm flapping when excited about the hoops being put out! I know this in itself is not a definite pointer to autism. My question is - would we know by now if he had a problem or could he start to regress?

He takes me to the biscuit cupboard and points, understands commands very very well, sleeps well, has good eye contact. Plays well. What is the best way to test 'following a point'? He doesn't always turn round when called by his name but when you say 'biscuit' he seems to hear! He does not say 'mummy' or 'daddy' yet but will say 'grandma'. He used to call me by my first name as that is what he heard dh calling me. His speech is coming on. HV asked at his 2 year test if he says 'daddy gone' He does not say that. He heard a siren today though and said 'noise'so nothing wrong with his hearing or understanding there and will comment 'where's it gone' about his ball etc. He talks a lot (say on the phone) but it sounds like a foreign language to us! Anybody else's child speak like that?

I just wonder whether the 3 year test is the one to really pick up anything wrong as children can regress inbetween 2 and 3. Is that so?

I just need my mind putting at rest, hopefully!

Annie12 -- Me replying should bump this to the top, at least, to get more informed comment.

But nothing that you describe would worry me. Not sure about arm-flapping, but rest describes my kids about the same age and they certainly (absolutely definitively) aren't autistic. Actually, DS's language was far worse than your DS's. DD didn't say 'Daddy' until her 2nd birthday exactly. She was saying sentences before that, actually. Think your HV was just trying to establish if your DS had any 2-word phrases at all my DS failed that one, too, when barely 2yo. Now (4yo) he won't stop jabbering.

If he's pointing well and has good understanding then I would say he's fine. The arm-flapping thing can be a bit misleading. Not all autistic children do it, and an awful lot of non-autistic children DO do it.

Every autistic child is different but I can give you a rough picture of what my ds1 was like at 2yrs old, and his autism is pretty mild:

He often seemed to have a hearing problem. He didn't even flinch at loud noises but would turn around if someone whispered. He didn't have any words at all at his 2yr check-up and eventually started talking at about 3. He started pointing occasionally at about 2.5yrs but even now (at nearly 4yrs old) he will sometimes look at your hand rather than at what a person is pointing at.

From reading your post I would say you don't have anything to worry about as far as autism is concerned.

ds2 was assessed by the area SENCO today. Didn't do too well - came out about18-months -24 months in things involving motor skills and 16 months for self help - basically can't do anything, struggles to even take his socks off. (He's 2y9m) However he did do quite well in terms of language although most people other than his immediate family find him hard to understand. I actually think that he would have done better on his language but he refused point blank to sing any nursery rhymes though he knows loads and also we had some debate over what constitutes a conversation. (ALso as we are trying to get 1-1 support at nursery for his language and communication it was better if he didn't score too well )

I still swing widely as to whether I feel he is autistic or not. I looked back at some videos of him at 18 months and he was talking on a plastic phone and doing the actions to the wheels on the bus. I also have film of him at about 15 months holding up his bib and saying bib then putting it on his head and saying "hat". Also I can remember him playing peekaboo behind the curtain - as you can see I have been reading all the threads on this site.

He doesn't seem to have the obsessions Jimjams and other describe. For example he likes to close the door or the stairgate but it's not the end of the world if you stop him. However he is still an absolute nightmare to take anywhere like the hairdressers or dentist. Also he has taken to walking on his toes sometimes recently which I know can be a sign - though I think he does it because he can and he can't do anything else like dance or jump. He tends to do it when everyone else is dancing or jumping or whatever or when he very excited (the times when my ds1 would have skipped or jumped or done something ds2 still can't)

However he clearly has problems of some sort and I have asked to be referred for a proper developmental assessment.

Anyway I could go on for ever about this - thanks for reading it - it helps to get it off my chest

Saker, I cannot offer anything but I would like you to know that I have read your thread from the beginning and my heart goes out to you.

I often read the SN threads but have nothing to offer, but that does not mean you not are in my thought, along with JimJams, coppertop, misdee, meiow, and dinosaur to name but a few.

It;s so hard to say anything useful, and so normally I say nothing at all,

Love to you all.

Sounds like you've done the right thing Saker. I think you've got cause to worry but whether its ASD or not, only time and an assessment will tell. Interesting about refusing to sing the nuresry rhymes and therefore scoring lower. Children with ASD can often do the little tricks and tests given by psychologists but WON'T do it whcih are two very different things and I'm not sure how they record that.

Awww! Thanks, Kalex.

It's difficult isn't it when an assessment relies on a child being able to 'perform'. Reciting nursery rhymes seems a bit of an odd thing to test though.

So sorry that it's been so tough for you, Saker. Fingers crossed that a full assessment will get you and your ds the help you need. xx

sounds like you've done the right thing asking for a full developmental assessment. DS1 was the same in assessments- he wouldn't do things I knew he could. That's how I ended up having a big arguement with a SALT about whether he was speaking or not. Because he refused to speak to her she said he wasn't. Never mind that he was speaking all the time at home.

Mentioning this book for the 3rd tme in 24 hours but I'm reading Charlotte Moore's book George and Sam now. She described Sam's 2 year check where he was asked to build a tower and wouldn't. She said to the HV- "oh he can do this, he just doesn't want to" and the HV said "yes but the point is he should want to".

Re- nursery rhymes. They're a developmental stage apparently. It was on the BIBIC checklist- I can check the age it corresponds to on the form. I remember becuase it was the highest thing that ds1 "passed" (with lots of gaps- like "talking in 3 word sentences" below it).

I think you can read too much into the refusing to perform thing. "Normal" children don't get assessed all the time so perhaps co-operate more when it happens once in two years - ds2 isn't stupid and he seems to know if you are testing him. He co-operated for most of an hour's testing and I think he had just had enough. I think many NT children would do the same. I remember my ds1 recited nursery rhymes well at the age of 2 and I tried a number of times to video it so we wouldn't forget but he always refused to do it for the camera.

Sorry meant also to say thanks for all the supportive messages. Was feeling a bit grumpy when I wrote the last one because ds2 had woken me up somewhat early

Obviously it's still largely a case of wait and see but I have been reading more about dyspraxia and that does seem to describe ds2 so well. Although I was worried about him pointing on the late side, recently he has been pointing lots and showing me things. He is interested in things I show him and also seems to have some awareness about other people. For example he knows he wants to watch "Maisie" but that ds1 will want to watch "The Lion King". A lot of his problems seem related to his motor skills and planning which would suggest dyspraxia. Either way I really feel like I need a diagnosis now so I can get past worrying and concentrate on helping him.

What do people think about delaying school a year? Where I live it is really frowned on but because ds2 is an August birthday he will be the absolute youngest in his year. Has anyone tried this with their child and did they think it was a good thing to do?

He's not too bad at nursery - he doesn't cause any problems or anything. Not yet toilet trained though and I don't think he joins in brilliantly.

He's also quite clingy to me and doesn't like me to leave him much.

He's still got 17/18 months until school would start but you have to start thinking about these things so early. He can start preschool in September and that feeds directly into the school so hopefully that will help us get a better picture.

Here if you do keep a child back a year they try to put them straight into Year 1 instead of reception which really would be a disaster...

I thought about delaying but then ds1 would have had to have gone straight into year 1 which is far more academic. A lot of the reception year is about getting the children used to school, queuing, sitting down, etc.

Ds1's birthday is later this month. We decided not to keep him back a year because I think a structured school routine is something he would really do well in. We're hoping (fingers crossed!) to get him out of nappies over the summer holidays.