god i dont know what to think now!

[Chundle]

Ok dd2 (2.3) had paed today and I'm left feeling a bit gobsmaxked really! We were discharged from cdc by the clinical pyschologists who said dd was too intelligent to attend and there was no way dd could have any form of autism as she was too communicative too switched on and too intelligent!
Pead today has said we never should have been discharged as she wasn't coping with the nursery groups at cdc so obviously still had issues and that high itelligence can mask issues and that he wants her assessed for asd!!
Is it normal for 2 professionals to have such differing views? I'm not confident being referred back to somewhere we were discharged from especially to where a pysch with such strong views will no doubt be part of assessment team!
Could be interesting though as paed is also part of assessment team!

IMO it happens quite frequently that medical professionals can have almost polarised opinions. I have had this with all 3 of my DS.
I must admit, I always like an opinion that is based on more factual evidence than observation alone.

Yes they can is the answer :)

Intelligence can mask a lot and the Pead seems to have good intentions to getting to the bottom of things.

I have had the "but hes so bright!", "listen to him talking away the know it all" "he knows his stuff!"

But he doesnt, yes he is bright and he misses nothing, but he talks for england and doesnt actually understand the words he uses. Then he will make up sentences to sound like he does if someone stops him in his tracks. Also bright or not, he cant cope and wont talk to kids or teachers if he can help it. And will have an almighty meltdown if he is forced to talk or explain something if it is someone he doesnt trust.

It took one proffesional to spot that, no one else has.

Ask for a second opinion, ask Pead if he can refer her somewhere else.

Hi, sorry to hijack...but how could you tell that he didn't understand the words he uses ? And how old is he ? Sorry, my son has similar issues, very mild and it does strike a chord

mum1369 he is 6yrs now. But when tiny he would watch peoples mouths, not faces or eyes, in a studious fashion. He also didnt babble and just came out with complete words spot on and big ones too! Whole short sentences were spoken at 9 months. He picks words up from the radio, games, tv and us.

Difficult thing is the words seem to be used in the right context for the right occaision. To anyone else he looks and sounds like he knows what he is on about and teachers assumed he had understood them because of this when in fact he was struggling.

Kids his age havent got a clue what he is talking about and so find him wierd as his vocab is too advanced.

I have caught him out several times when questioning him what a word means and quite often he will come out with "well I dont know do I!" and stomp off

DS is very intelligent and this can mask his difficulties. He can repeat things back to you but still not understand what you are asking him to do. His language use is far above his emotional intelligence and leads you to think he understands more than he actually does about some things.

All I would say is ask the Pead when you see him next if he thinks she is at the high functioning end before you decide what to do next. Places like camhs seem to struggle when trying to dx HF children.

Oh I see! Thanks for the info. My DS is only just 4 and was a slow talker. There were some asd issues from 2 but most of the red flags disappeared by the time he was x3 and a bit. But, his intonation is ever so slightly off and I sometimes get the impression he is repeating learned words and phrases, albeit rearranging them appropriately. Then sometimes I don't ! I'm not sure if I am paranoid due to the earlier signs and I am looking too hard. He does also transpose words and will go off topic, as if he presumes I know what he is talking about. He is still little and was pretty much deaf until two due to ear infections, so some of it could be down to that. Difficult to know, he gets on fine a nursery and copes well in most situations

DS2 was slow at talking as well, never really did the very short sentences, just used key words and waited for you to figure out what he meant. Then he started repeating phrases and sentences verbatim, in the wrong aspect (completely wrong in views of pronouns and such, so it was fairly obvious he was "copying and repeating back"). Now he is much smoother about it, although he still has great difficulty sorting pronouns and tenses, and it's only if you listen carefully or question him further that you can pick up when he is regurgitating a previous conversation or something he's heard on television or elsewhere. I do get a bit exasperated sometimes, as occasionally the school doesn't seem to pick up on it - they take it at face value instead of questioning him further regarding his comprehension, which usually is a dead giveaway. We get the "oh but he is so clever" nonsense as well. Clever enough to fake actual real participation in a converation, but still doesn't understand it.

Hi all on this thread, I am a master of concealing my disability, Auditory Processing Disorder (APD), on a good day, and possibly get away with things on a not so good day, but on a bad day the sign are obvious. It is human nature to try to imitate others to fit in, be part of the herd even when we do not fit in. One of the reasons our disabilities remain invisible is because we do not want it to be noticed if at all possible.

I looked at my diagnosis for the first time in years the other day, and looked at some of the detail, some of which i had forgotten, like for one of the tests I am below the single centile something like half a centile. And it was identified that one of my main coping strategies was my "knowledge of language". And sometimes it can take a while for me to process these threads and the main reason I do not join in on the Friday threads which can move to fast for me at times.

coff33pot
"when tiny he would watch peoples mouths, not faces or eyes, in a studious fashion."
may be learning to lipread or observing the source of the sounds of speech, and trying to learn the lip movements to help reproduce the sounds of his own speech. It is all done by imitation.

Mum1369
"was pretty much deaf until two due to ear infections,"
Severe Ear infections can have APD (a listening disability) as an after effect. Especially Otitis Media with Effusion (glue ear).

Which takes me back to Chundle
"Is it normal for 2 professionals to have such differing views?"
If it was not for us not agreeing with the so called professionals who were going down the ASD route, that our GP referred DS1 to a Consultant Pead and quite by accident because we took along DS2 and they related to each other so well that we first heard about what was then called Central Auditory Processing Disorder (CAPD) which was not what all the other professionals were suggesting at all. Back in 1998 even less people knew about CAPD or APD as it is now in the UK, in fact you could count them on one hand or may be two.

There is still a great deal more for the various professionals and researchers still to finds out about all of these issues, and not all professionals are able to keep up to date with the cutting edge of research.

And if you think of all of these possible issues say as an elephant, some professionals are tusk experts, some are trunk experts, and some are tail experts etc, but they call their area of expertese as elephant, but they are only really experts regarding bits of elephant.

Wow thanks guys for your fab responses.

Coff its not cahms its an child development centre place but not cahms got the feeling he thought was high functioning

oh god, no. even two trunk experts can have wildly differing opinions. the beauty of being a military family means we get to move around a lot, and so every year or two we see a whole new professional medical team of every flavour. (and also the odd one changes/ moves on during the 'static' periods.)

it has led to me to an extraordinarily unscientific model of what passes for medical science in today's culture. really they are all just guessing, and trying to back themselves them up with what sounds like common sense.

zzzz, i belong firmly in the cp camp with dd2, but occupy a more walkabout space with ds1 (as/asd/adhd/add/odd/pda/phobic/anxietys/incontinent/sensory issues/um something but we don't know what) so i'm frequently barging in on everyone's threads and going 'ooo, that's interesting, i wonder if it could be that....

Glad we are in the same boat zzzzzz ;)
My dd dislikes her peers so much that she will not even look at them, but is ok with older kids/adults, likes to walk same route to school, hates grooming, fussy withbeating and clothing, is a horrific sleeper and has awful tantrums, has slight speech delay but is getting there, loves light switches (on off on off), has to shut doors/gates, trashed the house, can be violent when in a tantrums,very intelligent, very hyperactive this list could be endless!
BUT her eye contact is ok with people she's comfortable with. Jointattention is ok with pellet shes comfortable , she has some pretend play (will feed doll with bottle),

So I suppose I can see why the split.decision on the asd! Can't think what else it can be though.

can you look up the clinical phsychologist and the paed and find out their qualifications/training in asd?

It's not an exact science but it sounds an awful lot like asd to me. There are other related disabilities of course but the 'treatment' will be the same and sometimes it is better to have a rough estimation of a dx as the dx in order to access help and support, than to hang around in limbo land with nothing and everyone refusing to help pending a dx iyswim.

DS has a dx of ASD but I tend to see it as a fluid/temporary thing that he may have for life, may be changed/added to or perhaps even removed. All I know is that right now, it suits us/him. I have read around enough to know what the other 'options' might be and I know what 'provision' he needs based on his difficulties. In many ways, the most useful dx will be the one that guarantees or at least helps him to get the provision that he needs.

DX are generally only given if they are helpful to the child to have them. In that light I don't suppose accuracy is all that important PROVIDED those who help and support give it appropriately.

Hi- Yes it's possible

One of 'the team' 2 years previously said 'I see no sign of autism in your DS'

2 years later she was still on the team and was one of the people who gave him the diagnosis

Thanks.
Star the pysch has worked with autistic children for 30 years however they are at the lower end of the spectrum and are much more typically classical autism. The paed who is a community paed and is highly respected does a lot of work with kids with adhd and aspergers so more at the higher functioning end ( where I think dd2 would be) and in fact this paed dx my dd1 with adhd.

Dolfrog - that's so interesting you should say that! I did masses of research at the time and also came to the conclusion it was APD. I pushed and pushed for an assessment at Gt O St, but they said they couldn't assess until 6, which I guess I can understand. It was glue ear yes, and very bad, but now resolved without grommets.
If you don't mind my asking, how does it effect you day to day? As it's processing, does it just take you longer to work out & keep up, but not in any other way? Would it affect intonation? It would seem more likely as it does just seem to be a language issue rather than anything else
Thanks for your time, I do appreciate it and you do seem to know more about this than most of the blooming professionals

How do you look up these people's qualifications?

I've been refused a tertiary referral twice now and 3 years and 4 educational institutions on, the GP & I agree it's way past time to get the "diagnosis" naiiled down for once and for all.

Our "asd assessment" team will reassess DS when he's 11. He got the wonderful label of "social comunication disorder with autistic traits" after ados - in the real world this is useless. I have to fight HARD for teacch and can't access autism outreach, regular salt ot etc.

Personally I think he's aspie with a good dollop of dyspraxia and apd thrown in like the olympic rings somewhere. My key aim now is to return to work to save up to go private & get a diagnosis before he's 8 as I'm sick of the fallout in school from noone knowing how to support him and the constant tail chasing.

I just googled the pyschs name then put on the area we live in and it popped up with a pyschology website with a whole list of pyschs and what they specialise in etc I did the same for her pead and I found some papers he had written. Good old Google is good for snooping

So if I've found nought on the pead/salt that did my son's assessment via a google it means there really isn't anything to find on their expertise in asd cos they haven't got any?

Sorry if that sounds thick but I do wonder wtf they were thinking iykwim.

There's a website where you can check out these things but I've forgotten it. Perhaps ask on the main board what it is.?

bochead I dont know where to find their qualifications but GOSH do tertiary referrals and second oppinions and the GP can refer himself? They assess children that are HF that are hard to assess. I had a link somewhere on one of my threads that someone put there for me.

Mum1369

APD is about having problems processing all sound stimuli. The sounds of nature, alarms, sirens, and sound based communication such as speech and morse code.

It like permanently living with a stereo system with faulty wiring, and having to best guess to fill in the missing bits of unprocessed sound.

There are various subtypes of APD, and the research professionals are still investigating and learning more about APD as their research programs progress. Basically those who live with APD know more about APD as the professionals are still trying to discover and understand the scientific issues that can cause APD and provide a scientific explanation for why we have these problems. So if you like, APDs provide the problems or pose the questions and the scientists have still to provide a complete set of answers for what has turned out to be a very complex set of neurological issues.

"As it's processing, does it just take you longer to work out & keep up"
So sometimes it can take long for use top process information, and longer can mean days, weeks, months or even years. But for much everyday or familiar sound information it can be minutes or hours.
"but not in any other way?"
When there are bits of sound information we do not understand we try to find other ways of understanding the meaning, which is all part of human nature, and we develop alternative compensating cognitive skills and abilities to help us work around this type of problem. So we have to think outside the box.
Some of the auditory issues include poor auditory memory (word recall problems) not bing able to process the gaps between sounds (not being able to use phonics and problems with rapid speech) problems with low levels of background noise (rustling crisp packets, others talking, etc, pink sound) And the same part of the brain also controls our sequencing skills and abilities, which can cause problems with repetitive task and spelling.

The other big issue is working memory. Working memory (short term memory) is like the RAM of a computer with limited capacity, and it is where we all run the programs we need to perform all our daily tasks. How we working memory is prioritised subconsciously. those of us who have to run any form of coping strategy to work around any form of cognitive or motor disability, have to run our coping strategies in our working memories, and the more coping strategies we have to use the more working memory capacity used up. Which means that other programs or abilities which perform other tasks have to make way to enable us to run our coping strategies. Usually it is our self organisational abilities and sense time skills that make way. And when complex or intense use of coping strategies are required say when talking to others, some other skills also make way, such as our visual receptive skills, and the ability to control the volume of our voice if we have to concentrate on the content of what we are saying. (pictures are a better way of communicating lol) The other side of this is that if we are ill or stressed than our coping strategies have to make way so that our body can recover. And because our working memories are controlled subconsciously we are not able to switch our coping strategies ON and OFF when we need them, it is more about anticipating what will happen tomorrow and hoping our coping strategies will be there when we need them.

I hope this answers some of your questions

Sadly GOSH need the approval of your local "caring carrot" before they'll accept a referral, GP's referral is not enough. Thus if your local "experts" say no, you are stuffed : ( I suspect my PCT says no due to cost as a matter of course : ( Other national centres have similar policies.

I don't want anyone to get the hopes up as getting that 2nd opinion/tertiary referral may not be a viable option for everyone. In desperate situations (e.g if your child is self harming, or at risk of exclusion). If your local pct boss man says no it may be simpler to go private (GOSH consultants do take private referrals)