Autisitic spectrum-advice needed please (long post-sorry)

[Tiggiwinkle]

I am somewhat in shock at the moment. My 5 year old DS was assessed by a peadiatrician yesterday and she feels he may fall within the "autistic spectrum". To put this in context, he was first referred to the child development centre when I expressed concern at his 3 year check about his "hand-flapping". I have an older son, now 15, who is dyspraxic and had also "flapped" which is why I was conecerned; my youngest DS had no other symptoms of dyspraxia as far as I could tell. The paediatrician who saw him as a result of this referral did not think there was a problem, but referred him to the OTs for assessmment just to be sure. The OT felt he did have some minor symptoms of dyspraxia-poor pencil grasp, cutting skills, problems crossing mid-line etc-and referred him back to the paediatricians. The assessment yesterday was the result; but the consultant does NOT feel he has dyspraxia. Instead she feels the hand-flapping together with some behavioural issues (very difficult with food; acute anxiety; compulsive routines etc) may put him in the autistic spectrum. Autism is something I have considered but had discounted: I had the classic view of autism as resulting in a non-communicative, non-tactile child. My DS has always been very affectionate and loves cuddles: his vocabulary
is excellent and he seems popular at school (although he has started saying he has no friends there). We now have to wait for him to be seen by a clinical psychologist and the paediatriacian will liaise with the school.
It is just such a shock to be told something like this, although it does provide an explanation for his sometimes difficult and stubborn behaviour. Has anyone had a similar experience of diagnosis at this age?
And are there any recommended sources of reliable information about this type of disorder?
Many thanks for any advice.

Uh oh, Sonrise/Options..... look at the other thread.
Jak, do you mean the teacher CAN say if he has ASD? I've never met one yet, most SLTs and some Paeds have enough trouble

Sorry mean't CAN'T!

Agree with MrsF. Sometimes a little knowledge can be a dangerous thing when it comes to ASD. No two children with ASD are the same. Just because a teacher has worked with a few doesn't mean he/she is qualified to give a dx. If it were that simple we wouldn't have to spend months on a waiting list to see a Paed or the CDC.

I agree that no teacher should give a dx, we are not qualified to do so. I assume you would want us to flag up concerns though? (honest question)

Tiggiwinkle - I've been reeading your messages with interest. This weekend I've been coming to terms with the fact my son fits into the autistic spectrum. His teacher took me aside on Firday afternoon to say he had been pinching and punchng the other children and when I sought help on the net I found he showed a lot of other symptoms too. It's been quite a shock, although we've always been aware some of behaviour is strange. He's just started at a new school after we moved house and went from a small rural school with 20 pupils where his special, though undiagnosed, needs could be easily accomadated. Now he is in a much bigger schol where the teacher simply does not have the time to accomadate him.
I was particualrly interested in your ds's toilet habits. My son is very similar. He refuses to use school toilets, finding them scary, and used to have accidents at his old school. So far none at this school... But at his old school his teachers recognised when he was feeling anxious about the toilet and would phone me and I'd take him home for a poo - there is no way he'd poo at school.
I suppose I ought to talk to his teacher about this problem in advance, but she seems so busy I feel self concious about takiing up her time and presenting her with more work - teachers are pushed to the limit already trying to meet government targets!

Ginsburg, have a word with the teacher and ask for a chat at the end of the day. She will have more time then than at the begining of the day and the mad rush! I am sure that she will be happy to have a chat with you and will think that the time is more than well spent. I did the same time with the nursery teacher my NT son had. He is NT but at the time was showing some ASD traits. She was concerned and so was I. In the end we called in the SENCO and ds was found to have some language probelms, which the school delt with very well indeed. Hope that things go well.

Hmb - If a teacher has concerns then I would definitely want to know. I think the problem comes when a teacher says that a child definitely doesn't have [insert name of condition]. It can take a lot for a parent to even mention the subject and when someone in authority says that the child is fine it can put them off asking for help.

My only problem is with science teachers...........

Most of us are wierd enough as it is

I am always facinated to see how close many of my science friends are to the ASD aspectrum (while remaining NT). Dh has a wide range of ASD traits, including an inability to use public loos! He has told me that when he was a teenager he found it very difficult to understand that other people didn't know the things that he knew...he would have failed the test as a young child I think. He walks on tiptoe as well, fixates on things. He is NT but very close to the edge. He was an engineer.

PS don't mean for one minute that 'we are all a bit autisic' and to down play it's seriousness. I work with ASD kids and know the difference between a few idiosyncratic traits (like dh) and a condition that invades all parts of someone's life (and those around them) and is a disability.

I have been in such a panic this weekend that my son would never have a normal life, but I mentioned my suspicions about his condition to a colleague yesterday and she astounded me by telling me she was considered high on the Asbergers scale as a child and still has traits. I was astounded because I consider her succesful and far more together than me. She went to Oxford! She said she has trouble understanding other people but she uses the smart part of her brain to work out compensatory strategies - it really struck a chord when she said this because I can see my ds doing this already.
I think the hardest thing I notice is how hurt my ds gets when other children don't respond to him - he simply doesn't understand that people are wrapped up in their own world and not his...I'm just going to give him lots of reassurance and he'll get the hang of it eventaully, if only in an abstract rather than empathetic sense..
...I'm new at this MN thing - I hope it's OK to wander off topic. I just need to share. We've just moved to a new city, and I don't know anyone and I'm missing the support network of friends who would usually help me through this stuff...

Tiggiwinkle - how are you doing with the shock? I'm gradually getting used to the idea my ds has problems rather than being simply eccentric, but it's hard coping with the changed perspective I have of him...

hmb-yes, I would definitely want the teacher to alert me to any concerns-this is why I asked to see her yesterday. As you know, it is very hard as a parent to know exactly how the child is behaving in school as their behaviour can be so different to how it is at home.
ginsberg-It is very interesting that your son has the same problem with the toilets-does he do what my DS does at the moment and insist on going before school (i had to drag him off again this morning but thankfully he did not get too upset this time) My DS has hurt other children as well-there was an occasion last year in reception when he punched another child. The teacher also told me when I met her yesterday that they are keeping an eye on him discreetly at the moment as there was a concern that he had possibly been hurting a younger child in the playground, although they were not sure and it was not serious enough to have spoken to me about it yet in the normal course of events.
I must admit I have been feeling quite upset since the assessment on Friday when "autistic spectrum" was first mentioned-it is a big shock, even if you have had niggling fears, isn't it?
It is also hard to be told there is the possibility that your child falls within the spectrum, but then have to wait months for a definite diagnosis-we will appparently not be seen by the psychologist for 2-3 months and then will see the paediatrician in 6 months.

ginsberg-sorry I was writing my post and thinking while you wrote your last post!
I have had a definite lump in my throat at times since Friday-I already have a 15 year old DS with dyspraxia, but this is somehow different. (although having done a lot of reading over the weekend it seems a lot of these disorders overlap and have common features-it does get very confusing at times!)

Ginsburg, I met dh (with all his wonderful traits) at Oxford. One of our best friends , who now has 3 sons with HFA, is convinced that he would have a dx nowerdays. His mother took him to the doctor as he was exhibiting a wide range of ASD traits and was told to take him away and try harder with him . This man is happily married, hold down a highly responsible and very, very well paid job (he even has his own boat) and is happy and fulfilled.

I am currently teaching a boy with HFA. he has gone from having to be taught in isolation to being fully integrated into the class over the last three years. It has taken a massive amount of work by the family, the school and most of all the boy, but he has got there. His is, without a doubt, the brightest boy in the year. I'm not posting these to be a pollyanna, or to down play the difficulties that ASD can being, but just to say that not all stories are bad ones.

Tiggiwinkle - My ds is fine at home with the toilet - (mind you when he was a toddler - he would scream in terror every time he pooed - that phase is over fortunately) if anything it's me nagging him to go before school because I'm worried he'll have an accident and get teased. He does have one ritual at home though which I can't persuade him to break - he has to take all his clothes off to have a poo!

My ds sent a classmate home in tears after punching him on Friday afternoon - this is waht triggered the teacher to voice her concern. I've sent him to school with a special smooth fossil thingy in his pocket and told him to fidget with that whenever he feels like lashing out at the other children. It seemed to help as he came home with a clean slate yesterday PLUS he told me proudly he had showed it to some of his classmates. I might send his pockets filled with other distractions that might also help him bond with the other children. Do you think this is why Just Willaim always seemed to have a frog in his pocket?

I'm not ready to try for a diagnosis - I'm hoping my ds's problems will be mild enough to be managable with the co-operation of teachers. With the new fad for inclusion, teachers seem pretty clued up and ready to help problem kids. My ds passed the Sally Anne test, but he's 6, so has had longer to assess other people's thinking strategies.

As for the shock - I think it's going to be another week or so before i stop bursting into tears when no one's looking!

hmb - you be as much of a pollyanna as you like - it's just what I need right now!

ginsber-its great that your strategy with the stone in the pocket has so far been successful!I have not been able to get to the bottom of why my DS lashes out-when I have asked him why he has done it, he just say "because I dont like him" or "he is stupid". I dont know whether the other child has teased him or hurt him in some way, because he is very reluctant-or unable-to discuss these incidents afterwards.
I suppose one of the reasons I would want a dx for my DS is because of the problems I have had with my dyspraxic son-he was not diagnosed until he was 9 and we have had great problems even then getting him the support he needs-still are having problems, as he struggles through year 11 and GCSEs.I just feel if my DS does have a problem I would rather it be officially recognised so any problems can be dealt with as they arise.

I totally understand your desire for a diagnosis - especially if you've already been through similar problems. I might end up finding I feel the same. This is all very new to me. Right now, I don't want to draw my son's attentions to his problems.

As for the hitting other children, I have similar problems trying to get an explanation from my DS for his violent behaviour and often put words into his mouth by interrogating him too earnestly - "he's annoying" is the commonest excuse or "he's dumb". I think the violent stuff is a combination of DS being very tactile, not being able to keep his hands and feet still (if you leave anythinig withini in range he will poke and push at it till it falls over, falls off, etc - not absolutely deliberately, but just because he has to fidget) and being very impatient with others - he expects peopel to be on his wavelength - want to play what he plays, know what he's thinking - he gets cross when poeple don't because he thinks they do KNOW and they're just being obstructive/obtuse.
This is all purely based on a mother's instinct, I have no evidence, it's just what i sense...

I do sometimes wish all our unique little boys could get together to play. I know my ds would love to be shown a fossil, and help collect sycamore seeds - in an environment where his gaucheness (eg bouncing up shouting hello repeatedly when they're in middle of goodbye hug with parent) wouldn't mean other children looking at him oddly.

What a lovely thought Binkie - any of you live in Sheffield!
My DS runs up and down making car noises and woe betide the person who doesn't realise when he's doing a petrol engine and when he's doing a deisel engine. (btw He can't do a deisel engine in the morning because his "lips are too sleepy")

Just out of interest, Ginsberg, did you know that Sir Peter Ustinov used to do that all the time when he was little? He mentioned it in his biog, I think it went on for years.

hmb

You have ALL cheered up my day - Thanks!

And mine too! It helps keep things in perspective-thank you.

Binkie, your post has reminded me to thank you for being so lovely about my son's reaction to balloons at the summer picnic. When you said you understood that it was the fear the they might bang that made him uncomfortable - I felt his relief that at last, someone understood! and my own relief that someone understood and I found one person to whom I didn't have to explain/apologise for my son's behaviour. You are lovely, thank you! (see you at the ballon-free christmas party!)

sis what a sweet post

Just so we can share enthusiasms, ds's current love is building detailed Lego mazes and "games" - I think inspired by the school computer programmes - and likes to talk you through how to win (not very easy to follow). He also makes himself toy spelling books and sheet music (!!)

Just wanted to say I really enjoyed reading this thread: nothing much to add from our pov atm as I feel we are somewhat in limbo, but I am really encouraged to hear you all talking so positively about your boys' eccentricities. Sometimes I feel I'm not sufficiently positive about ds1 and just see the areas where he struggles. But we are delighted that he's really clicked with his new teacher, and she seems to appreciate his quirkiness