How can I tell if my son has asd and how can I help him

[juggle]

Hi there. This is the first time I have used a discussion board, and this is because I am desperate to know how I can help my eldest son. I have 3 boys aged 5yrs 10 months, 4 years and a 9 month old baby.
My eldest, O , has always been very bright. At the small Montessory nursery which he attended from age 2 and a half they said that he was a little quiet and very slow to follow instructions given to all the children, but had no language or learning problems.He could appear shy or concerned when meeting unfamiliar adults or children and could be a little concerned by changes in routine but this was all considered quite normal for a child his age. He has always had very good imaginative play and has a very enquiring mind.
When he started at mainstream school in Reception aged 4 ( he is a July baby so young for his year) he found the adjustment difficult even though he showed no sign of it at home and didn't seem unhappy. At school however his teacher told us that he was withdrawn and often seemed to ignore instructions and appeared stubborn. he would take a long time to go to the toilet and had to follow a set routine while he was there (eg using the same basin each time). His motor skills were poor but that wasn't helped by him using his left hand at the time. A year later he decided he was right handed and it has all become easier, and while his writing is not as good as others in his class it is a lot better. His reading was excellent but he apparently never seemed very happy at school and would often be playing on his own in the playground. By the end of his Reception year there had been a great improvement with lots of help from the school and advice from the Early Years advisory service. He appeared a lot happier and was better at playing with others but could still get frustrated if they didn't want to play the game his way,and this can still be aproblem now.
School were concerned about the move to Year one where the routine is a lot more structured but O has taken to this well but can still be bothered by changes to the usual school routine. He is doing really well academically but only when HE wants to. This is their and my major concern. They think he is really bright but is very poor at following instructions and needs to be chivvied and cajoled into doing things. At home I have always thought him a bit of a dreamer...it's almost as if he is not interested in the practical things in life like getting dressed,he is too busy thinking about what clouds are made of and deep questions like why can't he see God if he is supposed to be able to see us. I need to keep on at him during the getting dressed process as he often forgets and starts reading a book. If I leave himaalone to get dressed while dealing with the other children he sometimes seems to forget entirely. he has no sense of urgency if we are late.
At school they say that on a good day he is one of the top in the class but on a bad day he can sit there and refuse to do anything. He is easily distracted and has trouble keeping on task. They feel he has so much potential but don't know how to get it out of him. They also got their special needs coordinator involved as while he is not unpopular and does play with others he doesn't quite know how to' become one of the gang'. His younger brother is a lot more sociable and ,if O has friend to play, he will often end up playing with the friend while O plays (happily) on his own. They have also felt that he fails to raed the clues from people's faces but we haven't noticed this at home.
They have told us that he has traits of aspergers or autistic spectrum disorder and we have now had him referred to a community paediatricain via the health Visitor and Speech and language Therapist, and have been anxiously waiting for an appointment.
Meanwhile his behaviour appears to have been getting worse at school and they say that they are running out of strategies to keep him on task and get him to do things. he may have been disturbed by one of his closest friends moving to another school and has had trouble getting to sleep at night. He seems fine at home ...well what we know as 'fine'. As he is our eldest we just think that this is what all 5 year olds are like....he can be dreamy and doesn't listen to instructions.
Having read a little about autism/aspergers I am not sure that many of the traits apply to him....he has excellent communication and language skills, isn't obsessive and doesn't take things literally. He just doesn't want to do his maths or writing if he doesn't want to! How can I help in finding a way for them to motivate him at school? How can I help him to integrate more?
Is it likely that my other boys will be the same?
I know this may not seem a severe problem compared to many other children but I feel so frustrated as I don't know how to help him, as I know he is very bright, but just doesn't show it. Will he always be like this??? How will he get on as an adult?

Its impossible to say whether your other boys will be the same because as yet thres nothing definatley wrong with your son.

How long is the waiitng list for the pead in your area? do you have a number where you can ring and ask to be notified about cancelled appointments if any come up?

The problem with AS and ASD is behaviours and rituals can be very setting specific, there will be things he does at home and school that are unique to each IYSWIM.

the thing with aspergers, and please anyone jump in and correct me here, is often language isn't delayed nad can actually be precosious, and they are often [not always] very bright...

How is he with the concept of time, I know you say he's dreamy and has no sense of urgency but if you were to stall him for 5 minutes would he wait that long or would he just come and ask you for whatever again?

Does he have anything he IS interested, not an obsession or naything, but if his writing and math was tailored otwards that would he be more inclined to do it?

The playing thing stands out as well... the whole notion that he wants to, but just can't work out how.

Hi juggle. My son (now just 7) is very very like yours, and if you look around on here you will find a number of others - at the moment the archives aren't easily searchable (I think) but whenever they are look under my name or the old version of it (binkie) and you will find masses.

My son has no diagnosis, despite having been trekked around to various different people & seen ed psychs etc. He is so like yours (the dreaminess, the distractibility, the lack of obsessiveness, the inquisitiveness, the evidence of braininess when he's motivated but not when he isn't, the problems-at-school-but-not-at-home) that I suspect you will end up in the same slightly odd position as us, of "something" being up but it not meriting a description of any kind. Which is just to say that if you do take the plunge and go into the diagnostic system you may not come out any wiser.

One thing I have noticed on here is that parents with children who do end up with ASD diagnoses have not had my "now you see it, now you don't" experience - they've had really awful struggles with a range of things (not always the same ones) like eating and sensory issues and sleep and aggression, which is very different from what I deal with and what it sounds you deal with.

I have only read this quickly but I wondered about dyspraxia which can overlap with AS. It is characterised by poor motor skills and I wasn't sure how much this applied to your son. Dyspraxic children can be slow to follow instructions and have trouble with social situations. Try looking at the Dyscovery Centre website.

Bnag on Emmalou, Sam was 'fluent' by a year, so language isn't always delaued. A lot of the dtuff you wrote yes, that sounds like Sam. much doesn't though, he has no real imagination for a start.

Read everything you can, that's what I did with Sam. He doesn't yet have a DX (part of that is tomorrow- uh-oh) but even if we got the all clear we'd still know that Sam was AS.

The NAS (national autistic society) website is really useful, as is their helpline.

Sometimes this behaviour (the routines, taking a while to settle) is abosolutely normal in five year olds.

What does your instinct tell you?

juggle
Is he imaginative? have you ever pushed him? sometimes my eldest will tell you the most fantastical things, there is an element of imagination in some Aspergers cases, not many But I know I read it somewhere, though often what appears ot be imagination is re-enactment of things from books/TV etc.

For your own peice of mind get things checked out
evenif no definate concusion comes from it but you gt some reccomendations, thats better hten the not knowing nad walkign in teh dark surely?

Hi there emmalou...yes he is very imaginative and can be stalled for 5 minutes. It's almost as if he can't see the need to hurry....and as for schoolwork if I ask him why he didn't get all his spellings right in his test when I know he can spell them all perfectly well,he just says it doesn't matter. It's almost as if he can't see why he should do what the teacher says at school...unless he really wants to....

I think your son sounds like a very bright boy, and that in itself can cause problems with behaviour and obeying rules [if he thinks he's too clever and above them basically] Its probbaly worth getting him checked out by the pead and whoever else wants to assess him, that way you'll get a working plan for ways to deal with him,as it were.

Oh my goodness! A lot of what you describe could be me talking about my DS1!
He is 6.5 & in year 1, but there have been concerns about him since nursery days.
He has an IEP & school have had someone from the social & interaction team in to observe him, but he was having a good day at the time, so not much came from it.
He appears very lazy & lathargic. In reception they would tell us that he would sometimes just lay on the floor (he has stopped this now), he doesn't seem to listen to instructions at times, he is bright but has very poor fine motor skills & his handwriting is very immature compared to his peers, he has poor concentration, cannot organise himself & getting him to get dressed is a nightmare! He also has to be literally dragged to school, as he is very slow & has no sense of urgency, which can be very frustrating.
I think the SENCO at the school is thinking down the AS road, but like your DS, a lot the traits do not apply to him, as he is not that bothered about routine & change, can socialise in a small group (although this has taken time & he hates large gatherings) & is very empathetic towards others feelings.
I am really worried with how he will cope with the challange of year 2 & SATs.
I have wondered whether dyspraxia may be a possibility, because of the motor skills aspect.
As for other siblings being effected in the same way - my DS2 (3) is the complete opposite of DS1, so there is no reason to feel your other boys will be the same.
I have never been able to put a finger on DS's difficulties & have always fought against him being labelled, but I am now starting to face up to the fact that DS may have a problem.

Juggle, Bink and Blueteddy - you could all have been describing my older son (almost 5). I usually post on here about DS2 who has ASD, but occasionally about DS1. He is almost exactly as you all describe: dreamy, lacking focus, doesn't always follow instructions or answer questions, no sense of urgency, behind his peers in fine and gross motor skills, bright, curious, good at reading, popular, but not always quite sure how to be 'one of the gang'. Juggle, your comments about your son's deep questions when he's supposed to be getting dressed rang very true!

He hasn't been assessed yet, but my instinct is that he's on the borderline between NT and dyspraxic, with some Aspergers traits thrown in when he's particularly stressed or tired. It's really hard to know whether to get him assessed or not. He's already getting input at school (an OT programme 3x a week) which is helping him a great deal, seems happy and his teacher says he's making good progress. I don't want him to feel he has a problem - he is happy being him and everyone loves him. At the same time I don't want him to miss out on any early intervention which might help him.

We need to form a club!

This thread is making me feel a bit better! I had never come across another child quite like DS (I work in a primary school & have come across autistic & AS children) & I get myself really worried & upset about him.
Maybe dyspraxia is a possibility. He was very late learning to ride a bike & is still not the greatest. Also he was walking down the stars two feet at a time until recently. He even slouches at the table while eating!
School have reported that at times they have to give him instructions for every little task, eg: to get his chair, pick up his pencil & start writing at the top of his page rather than where ever he pleases!
He is also horrendous at getting changed for PE & will happily have one of the girls to dress him!!!

Oh God - DS1 does that too - when he's lying about the place not making any attempt to put his shoes on and I say "What do you do at school when I'm not there?" he says "Don't worry, Mum, Courtney/Sadie/Amy does it for me"!!! I've seen them lugging him up and down the climbing wall at the playground too!

This sounds very like my little sister growing up. She never had a diagnosis of anything, and is fine as an adult - still dreamy and scatty but happy!

BTW I read a recent piece of research saying scientists have found that people with autism/Asperger's don't daydream.

That's interesting, snowleopard.
I think the school are at a bit of a loss with my DS1, but are looking down the AS road.
Yesterday I picked him up from school & out he came with no lunch bag & no book bag, so I sent him back in the class, only to hear the teacher saying "Come on, where is it? You have only just put it down!"
I peered in to see DS wandering around the room with no idea where he may have put his lunch box. It was lying on a chair!
His TA said that she asked him at breaktime if he had worn a jacket to school & he answered "I don't know?"
He had only taken it off an hour & a half before that!
I am really at a loss to know what to do with him & have been getting myself really upset again recently.

I've been reading this with interest. DS has dyspraxic and AS traits and I'm feeling utterly confused at the mo. - he's undoubtedly somewhere bet. the 2 but some days seem much better than others. At the mo. he's just started fulltime reception and is tired and it can take 15 mins to get his shoes on. The phrase, 'hurry up', has emtirely bypassed him. He also takes things super-literally, so when the teacher said she'd chop out DS' friends tongue if he didn't put it back in his mouth...!Ds is still also looking for his skates - so he can get his skates on..! But he is imaginative. How many mums have to pretend that a fireman has knocked on the door having rescued DS's imaginary anaconda brother who was stuck up a tree and who DS was weeping sorrowfully about?

Welll... at the risk of sticking my neck out into the autism debate again - I'm not sure literal-mindedness in itself is anything to worry about. I was incredibly literal-minded as a child and I'm certainly not AS - I was and am imaginative, spontaneous, flexible etc.

I think a lot of kids are taught over and over againb about facts and right and wrong and all this is very fixed knowledge being impressed upon them and they're not supposed to question it. Then they have to deal with, not only confusing euphemisms and idioms, but peolpe telling things that absolutely aren't true and expecting them to believe it (eg Santa Claus). It's no wonder some get confused and take things literally that aren't meant to be.

I remember a puppet show coming to our school and they told us to stare hard at the floor where we would see our own pair of puppeter's black gloves, we were to pick them up and put them on. I must have been about 5 ... I stared and stared, and got quite upset that my gloves weren't there. I looked up to see everyone putting on pretend gloves - I was mortified.

Snowleopard, I agree. Unfortunately this is just one of very many things going on for DS, ranging from very poor fine and gross motor skills to other social communication problems. Lots of children we know display some of the behaviours that DS displays. It just seems that DS has lots and that his performance at school is being hindered by something - it seems that he just does not process things in the way that his classmates do. We have suspected for some time that there are difficulties. DH works in CAMHS and me in mental health and we knew he was different. It's oonly really recently that it has become increasingly more obvious. We are only really pursuing a diagnosis because we think it will help us with him at school, in terms of him getting the right level of support. At the mo. this is going well.

Sorry I also meant to add that my confusion at the mo. is more about the overlap bet. AS and dyspraxia, not that because DS is literally minded that he is def. AS. It's jsut the difficulty of waiting for assessments and paed. appts and in the meantime feeling slightly in no-mans land, although inclusion support are pretty good here.

Sorry ETM, was just musing aloud on literal-mindedness, not meaning to comment on your DS as such. Hope you get the DX you need.

Blueteddy and sphil, your sons' behaviour is so like mine it is uncanny. He has an appointment with the community paediatrician tomorrow, but I'm sure nothing will come out of it as he is having a really good week at school. Last week he was really hard work at school apparently; I think he was worried about something as he was having trouble getting to sleep at night and he seemed even more distracted than usual. This week he is much happier and has been doing well at school. My concern is that everyone seems so focussed on what might be wrong with him , rather that what we can do to help him. It is so frustrating when both for me and his teachers when you know he can do so well. Have you any tips ? and are your sons' behaviour quite so patchy.
I do find that giving very clear instructions with good eye contact helps, and having rewards...eg get dressed quickly and you can have 10 mins tv before school.

Patchy ... absolutely, juggle. And one thing that puts the problems sort of outside the ASD camp but into the ADHD camp is that there is no pattern - and no evident trigger. None at all. Everyone ever involved with my ds has looked for a pattern, everyone new to him thinks they will be the one to find one, and there just isn't. One day fabulous, does all his work, concentrates, interacts; another day is told off time after time for blowing in another child's ear (without seeming to register the telling off) and does no work whatsoever. We're having some days of the latter at the moment, which is a bit grim.

In terms of management, rewards do help if they are tangible enough. And now mine is a bit older I can be a bit more uncompromising - tell him that he can only have my attention if he earns it by doing something (anything) that he knows he's supposed to do (eg, brush his teeth after breakfast) without being told - and of course then if he does that he's showered with praise. That seems to work, but it wouldn't be the right thing to do unless I was sure that at bottom he really does know what to do.

Oh, I meant to say, blueteddy, that what you said about your work really struck a chord: the thing I've heard over & over again is "in all my [xxxxx] years of teaching I have never come across a child like X"