Social communication with autistic traits

[bochead]

The above is my son's "official diagnosis". What does it mean in your view?

Which specialist is best placed to comment on his long term needs?

He also has sensory issues - if an audiologist can't diagnose hypersensitivity to noise wtf can?

I'm asking cos his official diagnosis seems to be as much use as a chocolate teapot for accessing support yet I have a kid aged 6 on his 3rd school who is failing at attending for a mere 3 hours a day despite a statement.

Utterly fed up as his issues were highlighted age 4 - he'll be 7 in a couple of months and it's getting worse not better and despite endless meetings with what feels like every "professional" and their dogs noone has EVER giiven him even an hours worth of theraputic intervention. The impression I'm getting is that everyone kicks the can down the road if they can and it needs to STOP now, he needs to be able to access the curriculum etc before he gets much older.

sorry title should read "social communication disorder with autistic traits".

Who has DXed him, bochead? That is a really woolly DX. Basically some sort of social communication disorder, but not ASD, oh no, just autistic traits. So how is that actually different to ASD? I thought paeds were 'encouraged' to avoid 'autistic traits' in a DX, as it means nothing. Either he has ASD or he hasn't or they haven't decided yet. That's what you need to hear. I hope that's just a working DX and not a final one.

why do they say social and communication with autistic traits when autism is a social and comunication problem , is this so as not to define it more accurately to get out of spending or assisting too much , not that have as you say.

my DS has been DX now but took years and hes moderate asd and dyspraxic , why did it take so long? , because they and im sure this is true hope you will either hush up and disapear, move away and be someone elses problem, or give up through sheer exasperation from years of being given the run around each school passed the buck all the profs said i was exagerating hes ok they knew from age 2 when i told them my concerns but each school was unhelpful/ neglectful i was inexperienced uneducated had no idea about how the sysyem worked my DS's rights ,Im shy well used to be lol so didnt talk to other mums of my DS,s problems i was told he was disruptive and naughty (he displayed all the traits of ASD including head banging making funny noises, rocking arm/hand flappin was clumsy found communicating hard unable to make/sustain friendships the list goes on and on he wasnt accessing the curriculum, all they did was cause my DS undue stress well of of the family actually and he has now very low self esteem issues/ self harming behind accademically, hates school doesnt trust teachers, no friends, became violent, doesnt sleep, has toileting issues that list goes on and on too.
Ive been incredibily lucky i found a fantastic PP lady who supported me fantastically and my DH is not like myself shy hes in your face when he wants something which is lucky for me as if i had to deal with this alone god knows what would have happened.
the ending thus far of this story is those who shout loudest get noticed , my son is now doing much much better in SS and is actually making friends he wont ever LOVE school they put paid to that but hes doing better and happier inhis environment getting what he should be getting , we still have meltdowns but hes sleeping and no more toileting issues so i guess im saying dont give up bochead you will get there your determind i know you are you can do it (((hugs)))

That's a final one - now discharged from joint communication clinic after ados.

A consultant dev pead, salt and shrink sat in a room together and came up with this gem after a 2.5 year wait for the ados assessment. the only glimmer of hope is that their report says he should be retested before secondary age.

The school have found this diagnosis means he can't get asd outreach services either, so it's not just me thinking it's not helpful. I want to DEMAND a second opinion via my GP to get something we can actually use to get him help! Trouble is I need to make sure the referral is a/ to the right profesional and b/ outside my local NHS pct cos I think it is crap!

Really hope you can get a decent second opinion. Have a look at the NAS website and see if they have any advice for you. They don't seem to be a particularly strong charity, but I'm sure you're not the first to be fobbed off with 'autistic traits.' If you can't get ASD services referrals it's pants. Really for you.

oh yes do it then bochead you need outreach without the full dx there just making life even harder for you and your DS ffs cheapskates,the older DS gets the worse it will get without the right help i know that from experience its hard enough WITH the bloomin ASD dx ellens right look at the NAS site they are so wrong aggghhh

Well if the GP can't get me access to a decent second opinion I'll be a rebellious bint at tribunal and ask for a full ABA 50 hr per week programme at Eton for 10 years as only a totally individualised EXPENSIVE programme will be able to cater for his "complex needs" lol!
(That was totally tongue in cheek - really I just want a school that can cope with my lad wthout making him suicidal, an adequate education as the law say he is entitled to).

Is the social communication clinic at gosh able to differeniate between asd, nld, apd, adhd and give a definitive diagnosis does anyone know? I'll only get one shot at this so need to get it right in who I request.

I don't have experience of the clinic at GOSH. Perhaps put it in a thread title?

thats in a shutnell lol as my aunt used to say about it i wanted x school but kept harping on about this independant SS aand low and behold they offer me the one i really want bit of reverse psyc , haha you would think they would notice shows how Poo they are they didnt see it a mile off

I've just found a private clinic that does diagnosis - £1650 - eeeek! Without any chance of going back to work till DS is in full time school it's a catch 22 for this single Mum.

That's steep! Try NHS second opinion first! Why not write to your current paed and explain that you can't access the ASD educational services with 'autistic traits,' they may not realise.

They damn well know about asd educational services - I told them both at the appointment and at the follow up! They knew he had 2 failed mainstream placements when they did the test too - not their problem though is it? The SALT who did the diagnosis is now assigned to my son's school so hopefully Karma will help at some point. His previous school wasn't one on her list.

SALT monitoring is in his statement - she WILL be asked to justify her waffly vague report at tribunal if I have my way. It's not the lack of an asd diagnosis that upsets me tbh (after all who actually WANTS their kid to be asd?)- it's the total lack of guidance on next steps that upsets me when it's so obvious there is something very very wrong. It's not just an over protective Mum saying there is a problem it's every school/teacher that's ever tried to cope with him.

He's signed off from the peadatrician now too : ( It's back to my GP for a second opinion time I think and the whole cycle will start again of waiting for the assessment - 2.5 years the first time wasn't stressful enough apparently.

even though my sons paed signed him off i rang her office back when i started getting more problems bochead so it might be worth a call and your right you cant all be wrong for goodness sake i was fobbed off first time round and had to go through it all again its not fun thats for sure but dependant on where you live GOSH would be good for referal if you can get there or oxford maybe?

Bochead, have you seen Oblomov's thread. She did manage to get an AS DX but was worried for a time that she wouldn't and there is lots of advice on 'tertiary' centres like GOSH for specialist second opinions when DC's symptoms are subtle. Link here

Have you seen the thread I started today Ellen. DS's symptoms are subtle at home & when he's feeling safe but at school? Hell, no - he's a fooking nightmare!

Ooh, yes I have, actually. Perhaps subtle isn't the right word, sorry. I suppose I meant ASD symptoms. But, anyway, the second opinion info is really good, stuff I haven't a clue about, but others seem to be quite up on, lots of centres mentioned. HTH

bochead

Not knowing the history but from what you have mentioned, on this thread, you could be looking at Hyperacusis which is about sensitivity to sound, and sometimes specific sound frequencies. Not sure of the professional awareness of this in every locality in the UK.
I have a collection of Hyperacusis PubMed research papers listed on my Wikipedia User page, which you might like to have a look at. (you will have to scroll down to the Invisible Disabilities section)

He deffo suffers over sensitivity to certain pitches or tones (as opposed to just general loudness iykwim) - the NHS OT who helped identify that has gone quiet. Must chase again.

Trouble is when we saw the audiologist she couldn't even complete the hearing test - though she did ask me how I cope with him (rolls her eyes). Expert on autism/developmental/sensory issues needed cos I'm way beyond the point where google can be considered adequate to muddle through.

bochead

I agree google is not the best source of research based information, you could try some of the medical research libraries and their search engines the best is PubMed the largest online research paper library.
You can create your own online research paper collections at PubMed so you can save the links to the research papers most related to your interests, and you can create as many collections as you like with your Free PubMed account, and each account is provided with a link which you could share with the professionals you are seeing.

should read "each collection is provided with a link"

I can read as much as I like but to enable my son to access an education I need a definitive diagnosis from a professional iykwim. I've read LOTS of research papers etc over the last 3 years, some of wwhich you youself have kindly given links to on other threads.

An "armchair doctor" Mum isn't going to get my son the help he needs.

Sensory issues are a known subset of asd - ds has them but also lots of "quirks" or to quote the cdc report other "autistic traits"

It is not about being an armchair doctor it is more about using your knowledge of your Ds, finding the best matching research based information to support your understanding, and may be eventually knowing more about the subject than the professionals do.
Research in this area is still on going, The next batch of research papers could change the whole understanding of this wide spectrum of issues, there again it could still be some years away.