waiting for a diagnosis - need your opinions!

[coppertop]

DS1 (3yrs) is on the waiting list for the Child Development Unit. We think he may be on autistic spectrum but no one will tell us anything until his CDU appointment. He has only recently started to speak although this varies from echoing to sounding like a robot. He has only just started to point at things. He feels no pain unless on top of head, and has a tendency to half-close his eyes and look out of the corners of them. He has a real fear of the hoover and haircuts (prob because of head sensitivity). He is amazing with a computer and gadgets and somehow taught himself how to read at 2yrs though I suspect he doesn't always understand what he is reading. People often comment that he sometimes appears to be in a world of his own although he is very affectionate towards dh and myself. Our SALT referred him to the CDU in July but warned us that appointment won't happen until next year. Obviously you can't see ds1 but does this sound like autism to you or am I just being a paranoid parent? Any opinions (good or bad!) would be most welcome. Thanks.

I'm not sure if this is autism but I'm wondering if you can see someone privately might get seen alot quicker. Sorry to hear of your predicament.

coppertop there are a few mums here with children who are autistic who will be able to help you.
love
doormat
xxx

Posting to bring this to the top in the hope that Jimjams et al will see this, they have a wealth of knowledge which may help you. Good luck

mottie - thanks for the suggestion, but unfortunately we can't afford it otherwise I'd be straight on the phone (well maybe not on a Sunday ).It's just so frustrating not knowing how best to help him.
doormat - thankyou for replying too. at the moment we're just trying to figure out the best ways to deal with his routines and rituals but without trying to stop him from being himself -if that makes sense. We've had a few small successes (he can now hear the hoover without screaming but won't stay in the same room) but need practical help with other stuff, like helping him with his fear of sitting on the toilet. Any suggestions, however insignificant they may seem to you, would be most welcome.

thanks lou. I'll be around for the net 15 mins or so and then hopefully back next weekend (can't even afford broadband! ). So please don't think that I'm being ignorant if I don't reply before then!

coppertop, sorry but this does sound like he may be on the autistic spectrum. I know he is 3 but you could try the CHAT test. I don't have the link but Jimjams has posted it before. I'll have a look for it but you may not get it in time before you sign off. There are also various checklists available on the internet, an american one run by a parent called John WObus, google him to find it. ALso look at www.nas.org.uk and www.firstsigns.org
I truly hope it isn't ASD but it is better to know if it is.
There should be some support available pre-diagnosis but its a good while ago for me now. Badger the people at the CDC and, if he attends any form of school, get them involved in helping you.
Good luck and sincere good wishes.

thanks davros. will go and look up the CHAT test. We've had a visit from the Early Years Inclusion Service (another one due next week) but she doesn't really want to come right out and give her opinion yet. Suspect that she too is considering autism. Has referred us to portage but haven't heard from them yet. Not even sure what they can do for us but would be glad to hear of anyone's experiences with portage. I'm off now!

I think it www.brainchild.com

This site has a whole page of links to autism diagnosis, testing, assessment and treatment.

Autism network resources for physicians

Good luck coppertop

Hi coppertop. I agree with Davros I'm afraid- it does sound very suspicious (certainly need to get that CDU appointment - although - just as a warning they can be pretty crap). I personally think that waiting until next year is ridiculous- its too long. Hard though this is (although it gets easier with practice ) I think you have good reason to pester the CDU and try to get an early appointment. Ring up, ask for cancellations, write, whatever. Often these places have specialist HV's who can be very good. Your HV may be able to refer you to here. Ours had my son fasttracked when he had just turned 3 - so he had a series of 6 sessions in the CDC where he was seen weekly- and saw all the pros in that time- SALT, paed, psychologist etc. We then received the diagnosis at the end- so we had it by the time he was 3 and a bit. Getting the diagnosis as early as possible was worthwhile as we then had extra options.We were able to go on an earlybird (NAS) course and he got extra help at nursery., I now realise I could have statemented him earlier as well.

Portage is good- we had it for a year and they were great. The other good thing is that you then enter the system and so you become official which may make it easler to get seen quicker (sometimes true sometimes not). Is your son at nursery? DS1 has had extra one to one support at nursery which had been helpful.

Sorry not to be able to say that I think you're being paranoid I'll try to post some links during the week as I think of them.

Thankyou everyone. I sneaked onto the library computer mid-week to have a look at your advice. I think ds1 would have certainly failed the CHAT test but it isn't offered in our area. It makes me angry that we could have picked up on his problems so much earlier. The EYIS people visited last week and are sure that ds1 has a lot of sensory problems. His hearing, sense of smell, vision, and taste are all hypersensitive. His body is generally hyposensitive except for his head and feet. He'll be seen by the occupational therapist within the next couple of weeks so it looks as though we will finally start getting him the help he needs. The EYIS say that he seems to have some autistic traits (need for routine, rituals, obsessions etc) but that he doesn't have others. It looks as though only the paediatrician will be able to say for sure but I don't mind the wait so much now that we can start to make life easier for him. Your description of portage sounded great, Jimjams so we're on the list for that too. Again it should only be a matter of weeks. Thanks again everyone for all the advice.

Just read this thread and really feel for you COPPERHEAD!!
Am in a similar position myself! Hope you don't mind me 'pinching' this thread...but was unable to start my own conversation (again!!)

My DS2 is 7 this month and i am 100% certain he has some degree of autism. DS1 has Aspergers. I insisted that DS2 be 'tested' for it too as i experience loads of Aspie things he does and also am constantly having to 'reassure' him when his 'boat is rocked'.I have posted loads about his 'symptoms' so won't go on again about them here!!
The specialist who diagnosed ds1 has observed him at school-has agreed that whilst he shows behaviours that are on the spectrum she says that "problems" have to be evident at both school and home and that in this case she could not see any advantage in diagnosing him now....now i can think of several GREAT reasons to DX now....

1. Get everyone off his back who call him 'winger' (that's win-jer!!!) everytime something 'rocks his boat'
2. enable me to sign him up for a 'holiday club' for autistic children that DS1 attends
3. Give me permission to ignore those busy bodies who look on disapprovingly when he 'pivots/spins/hops/bounces' etc when queing up at shops
4. apply for DLA to help finance all these 'obsessions' that he has -the same ones that family critisise us for 'giving in to' and 'spoiling' him....but which those of you with similar children will know that it's not the case and having an Autistic child can be v.expensive...i'm just glad argos catalogues are free....! 5)get some OT help with his eating

My health visitor has been once (prior to this school observation) and will be coming again in half term- maybe she will see enough to help me on this one

----just seems unfair that i am struggling (but managing) so nothing happens to help me- however if it were at school he had probs then they'd be pushing for my agreement...and they'd win.

OOOOOOPS! Coppertop!!!!!!

Dinosaur, not sure how old your son it but the NAS have launched a version of Earlybird for older children its called HELP, I suppose it must be for over 5s, maybe info on their website. Although, if EB not available in your area maybe this won't also. Sorry, not much use really
Mrsforgetful, is there any way you can put any more pressure on the paediatrician etc to get a diagnosis? IMHO there is NO benefit in not giving a diagnosis, for the reasons you've stated and also for the whole family to be able to function. What area are you in if you don't mind me asking?

I thought you had to travel to Bristol to get HELP. OUr EB team were quite keen to implementit down here but NAS say it has to be done form Bristol or something. EB is worth doing though if anyone gets the chance. Maybe I could send ds1's teacher on it (hee hee). Actually the sperson who runs it down here is the autism outreach worker that's how I know she's so good.

DAVROS- i'm in wiltshire.....i've decided to keep a very concise diary at the moment-

eg:last week(at school) he wandered off from the class group who were on their way back from the field to their class- he apparently (unnoticed) went and sat on a bench in the middle of the playground under a tree- at some point he realised he was alone and wandered back into class-apparently he was a bit 'edgy'

on the way home from school the other day we were crossing the main road (with the lollypop lady's help)He walked 2 steps then turned full circle then walked 2 steps then turned full circle again-oblivious to other people and traffic etc

just for 'fun' the other day i decided yo take the shorter route to school (we were late) he complained and whined bitterly about us going the wrong way the whole time untill we got to the point we would have reached if we'd gone the other way- he then stopped moaning

was called out from assembly the other day as he began arguing with 2 classmates- his 'explanation' is that they were annoying him and he tried to stop them - apparently this was at the top of his voice- he is unable to 'adapt' his reactions to any given situation (he tends to 'squawk' in a very high pitched way whenever things 'upset' him)

he is finding settling in to yr 2 hard- we think this is in part to DS3 starting school and whereas i used to wave at the gate and not come into school i am now taking youngest into class- ds2 seems to be very unfocused- he used to run straight in -hang up his bag coat etc and go straight in- now he 'dithers' -

finally, teacher 'let slip' thatshe was pleased the other day when he was 'chosen' by others to join in a class activity- she said he was usually one of the last to be picked- now last year at school he was 'Mr Popular'- had at least 2 parties a month to go to...i have had 1 parent already mention to me how her son was upset as my ds2 keeps distracting him (they were best mates last year),,,,,,,

I just wonder that if i wait a month or so that more of these kind of things will happen....i feel awful WANTING it to happen- but the fact is....I believe that in the right circumstances..he would give the Specialist no doubt as to his need for a diagnosis

I think the diary is an excellent idea, you could try videoing too if you have the patience (I don't!). I don't know anything about Wiltshire (other than there's a white horse there?!). Forget HELP then, but maybe there's an NAS branch near you? These are usually very helpful and full of other parents who have similar experiences and will know local services and professionals. Not much help again, sorry.

I can almost see the white horse from my window!!am planning to video in the holidays- but at the moment i use an audio tape recorder- i start recording when he does things like talk constantly without interest in my comments etc/his reaction to new foods,toys breaking,questioning him on why he said or did something ...such as his inability to apologise- and YOU have helped me simply by reading and replying- i will hopefully get somewhere with my health visitor- i trust her 100%.....she even got me funded nursery education for him when he was 3 (before it was available to everyone)- so even then she knew how demanding and exhausting 'they' can be!

Dinosaur, yes it would be great if you could tell me more about the red flags for your ds1, and also what happens with the diagnosis. Our appointment for the CDU arrived yesterday and will happen in mid-November. It would be helpful to know what sort of things we should expect. We should be getting unlimited internet access v.soon so hopefully I'll no longer be just a 'Sunday Surfer'!