ASD - Help feeling very confused

[claw3]

Ds definately has sensory issues. He has been seeing OT weekly since October 2008 and she suspects he has Sensory Modulation Disorder and that ds is gifted (apparently gifted kids are often over responsive).

We have also been seeing comm Paed for the last 2 years (4 visits) but we have never seen the same PAED twice. He was tested for autism about a year ago and ruled out.

We went to visit senior Paed last week (1st time we have seen her) and she is disagreeing with OT's DX. She suspects he has autism and referred for him to be tested again.

My ds's behaviour in general is that he is compliant, kind, helpful, very polite, he has an extremely high attention span. What are the behavioural signs of ASD?

I dont really care whether ds is gifted, as im sure this will become more apparent as he gets older, but i dont want him to be misdisagnosed because of it.

What do you think?

Wide - He has a very good voculabary and understanding, his only problems are physical sounds ie he cant hear the difference between g-d and c-t. This has been put down to the fact, that he had fluid in his ear for over a year, early on, caused by colds and congestions.

Thefirst - No he never turns them upside down, he does mix 2 together and does them at the same time. My gut instinct was that he didnt have autism, im now questioning this. Just not sure anymore. Paed has referred to SALT to assess for autism again.

I suppose it will all become clear in the end.

I guess it is important to keep the diagnosis in perspective. You are trying to understand your sons difficulties/needs and how best to help. Whatever the final 'label' is becomes irrelevant. You know he has sensory difficulties, so continue working with the OT, SALT will advise you further but language doesn't sound like your major concern. He may have some social difficulty but so do alot of kids, especially boys. let the proffesionals worry about the diagnosis, because as a mum your instinct will help you know what your DS needs.

Wide - You sound just like my dh lol, stop worrying and leave it to the experts. You are quite right.

I found this recent research quite interesting.

www.autismcoach.com/gifted_with_learning_disabilitie.htm

74.125.77.132/search?q=cache:wo5YgX1wdPQJ:www.spdfoundation.net/pdf/SensoryissuesinGiftedChildren.pd f+The+%27double-edged+sword%27+of+giftedness&hl=en&ct=clnk&cd=1&gl=uk

Thank you everyone for your help

My ds also has good eye contact, though only with peole he knows, avoids eye contact with strangers, and interestingly, if he is talking, you have to make eye contact with him, he usually has a complete meltdown if you dont look at him while he is talking.

IIRC the OT told me that children with sensory difficulties are either sensory seekers or are sensory avoidant.

Ds2 is a sensory seeker and is always moving about, flicking, spinning, jumping etc. Ds1 is the opposite and generally avoids sensory input where possible which means that he avoids things like bright light, noise, touching things etc.

Ds1 would fit a lot of your description of your ds, although obviously this doesn't necessarily mean that your ds has ASD too. Ds1 is usually "compliant, kind, helpful, very polite" like your ds. The compliant part is probably partly to do with his personality and also his need to 'Follow the Rules".

I don't know whether ds1 would be classed as gifted in the true sense of the word but he is certainly years ahead academically in certain areas. He also has a knowledge of astronomy that is probably beyond many adults, certainly me!

The one thing I would comment on is the attention span you mention. I remember discussing ds2's ability to focus on things that really interest him with the Paed. The Paed nodded and said "Ah, hyperfocus". Apparently this too can be a part of ASD, but obviously I don't know whether this would also apply to your ds.

your boy sounds a lot like mine too claw (apart from the fussy eating) ...particularly when he was little...he's a bit more stroppy now!)
ds has a dx of aspergers and dyspraxia

Aspergers seems to have been mentioned quite a bit, i will familiarise myself with that a bit more i think.

The hyperfocus thing, just googled sounds exactly like him.

mumslife, when did your son speak?

My son seems like a classic 'aspie' but the speech disorder thing is confusing the experts.... is it possible to have both?

TheFirst, my son has aspergers and also had a speech delay/disorder, I was told it is very unusual as the two dont normally come together, they said it is quite rare and he is a complex case, however his speech is fine now

that's interesting. My son is displaying classic asperger quirks but because of his severe speech delay, he's not fitting into any box. So, the two can go together....

Thanks Mumslife, although your son's speech sounds a little on the late side, maybe it would have been classed as a mild delay, my own son has a 'severe' speech delay. He is 3.3 and he doesn't talk at all , well, car, tractor and train. That's it!

I don't know what's going on yet. 3 is young to be dxd though, i know that...

There is definitely something else going on besides speech delay though. I take comfort reading these boards, SO many other people are waiting for diagnoses as well.

Hi

Claw3 I've been following this thread with interest as my son is awaiting an appointment with a developmental paediatrician following my concerns about sensory issues.

Like your son, my ds has friends, is very imaginative and I believe he is generally empathic. Indeed, at not quite 6, he is always interested in issues in the 'big world' - presidents, poverty, wars etc. No speech delay and he's doing fine in school

I am struggling with what this might be too as his sensory issues are pretty pronounced:

tantrums over the slightest issue
loss of control and meltdown after school
very sensitive to smells
very sensitive about what he eats - limited diet (getting more so!)
feels seams and labels to the point of hysteria - shoes don't 'feel right etc'
gets very anxious about being in big group

But it doesn't fit the classic diagnosis or dyspraxia or any ASD and I wonder if these are stand alone sensory issues.

I think it is really hard because I keep searching for answers and he hasn't even seen a doctor yet! But sometimes I think I'm just making a medical issue of a child's behaviour.

On dad's side, all the boys are maths oriented - computing, physics, engineers and the like. It's interesting to note the connection between these things

The First Liffey.

I identify a lot with your post from Saturday. There's getting wet and getting wet isn't there? Mine loves swimming, including jumping in, but cries if water gets spilt on him and wipes it up and changes his clothes. They suggested the other day that the fact he doesn't play with the sand at nursery makes him tactile defensive. What do OTs do and are they useful to you?

By the way, does anyone know how they classify these speech delays? Is an "18 month delay", for instance, 18 months from the middle of the normal range or from the extreme late edge of it?

Mine is 3.5, can understand one-step language within a limited range of about 600 words. Can do choices/yes or no but not really 2-step instructions or sequences of events. A visual learner. Expressive-wise he has 450 or so words, talks like a "telegraph" (maybe it should be text message nowadays!) - supposed to be typical of age two - "Oh! mummy pour the pasta innothe colander!" that kind of thing. I don't know whether it's mild or moderate. Suspect moderate at least for the receptive language.

Hi Debs, Paed's always try to link sensory issues to autism, because sensory issues are very rarely a stand alone issue.

Did you read the links i provided further up the thread, one is some recent research (2007) by the SPD foundation, in America of course, they are about 10 years in front of us with research.

For example the paed we visited the fact my ds has lots of imaginary friends and plays lots of pretend games and has a vivid imagination ? to her indicates he is unable to separate fantasy from reality! even though he knows his ?friends? are not real, he knows the pretend cup of tea has nothing in it etc.

The fact he has an extremely high attention span and can spend hours with intense concentration ? indicates he is narrow minded and self absorbed!

Im having trouble seperating whats 'normal' or whats not

The red flags for me, which would suggest that my ds doesnt have autism are:-

He doesn?t take things literally i.e. he knows ?shall we take the bus home? means lets get on the bus, ?traffic jam? means a build up of traffic, 'hold your horses' means slow down, 'dont get your knickers in a twist' means dont get stressed etc, etc.

After he has explained something to me, he will ask ?do you get it? to make sure I have understood. He can use sarcasm ?very funny? when he doesn?t find it funny. He plays ?tricks? i.e. ?look behind you there is a spider? when there is not etc, then laughs and says tricked you. He doesn?t mind changes to his rountine.

I could be wrong, what do you think?

Debs - I just found this, i thought it was very good check list, it explains in more detail than the usual check list.

en.allexperts.com/q/Autism-1010/2008/9/4-year-old-Autism-1.htm

Ooops should have added you need to scroll down a bit, for the list.

Thanks I will look at that.

I completely sympathise with you as your son sounds similar in many ways to mine.

My son completely gets 'mickey taking' and sarcasm. We banter with him alot and he is not 'literal' or unimaginative. He also has a great attention span and is happy to write/tell stories with pictures he's drawn.

I was worried that by getting him referred I would invite professionals to find a label but my GP has assured me this is not the case and I will keep you posted on our experience.

I know he needs help with sensory issues so I'm trying to concentrate my mind solely on having that looked into!

Debs - Please do keep me posted with your experience and good luck

Your right the label is not important, unfortunately though to gain understanding and help to meet needs a label is sometimes necessary, especially in school, otherwise they are just viewed as 'naughty or uncooperative'

I hate labels i would be more than happy with a bright boy, with sensory issues

I completely agree with you. I think that is why it is so stressful waiting for someone to say 'it is x,y or z'. My son likes school but he can be overwhelmed by it sometimes and when he's had an early morning stress out because his polo shirt 'hurts', I'd like school to be able to accomodate and understand.

I have told them he has been referred to a paed but until we have seen the doctor and know what, if anything, is wrong, I'm just a mum worried about her son if you know what I mean!

We started 3 and half years ago and im still waiting for someone to say its x, y, z.

We started 3 and half years ago with referal to SALT (his issues are not deemed serious enough to warrant treatment, just 6 monthly assessment, hearing tests (failed but eventually passed) dietician (he referred back to HV after a year of no progress) Comm paed (he sees every 6 months)ruled out autism. OT has given dx as Sensory Modulation Disorder, Senior Paed does not agree with this, so she has referred to SALT for check for autism, hearing test and dietician.

Back to where we started 3 and half years ago ARGH!!

mumslife - That is interesting as there was something on the beeb website the other week about 'autism traits' and how, because it is a spectrum, many children exhibit classic signs (but not all of them) and as a consequence go unmissed.

I started looking at Aspergers too
, particularly because of the sensory issues and also his sleep - he always ends up in our bed every night and has done this since a baby as he says he is anxious.

I also think that he is empathic until someone crosses him on one of his sensory issues. For example, touch his toy gun (which I think he uses to ward off the world when anxious) and you've had it! He'll happily share anything else he has though

Really good to chat about this though. It can be very isolating.