another paed appointment ... what's the point

[phlebas]

ds (3.2) was diagnosed with ASD just before his third birthday. This has totally shattered us - ds has gone from being affectionate, bright boy with language problems that we will overcome with lots of hard work to child with terrible prognosis & we should suddenly regard the NAS as our parenting gurus (yes I'm bitter & angry still).

His problems are still primarily language related - receptive language has improved massively over the last couple of months (we're using Teach me to Listen & Obey), expressive is up to about 80 words (including some social language - bye bye, please etc) though still very few two word combinations (green star), he uses words for a variety of purposes including demands & still signs when he hasn't got the word. His pronunciation is very poor, we have a long way to go still.

The only behavioural issue we have is climbing out of the car seat, he's doing well at nursery & with the CM. He eats & sleeps well, no obsessions, stims, issues with routines or sensory difficulties. He is sociable & friendly, loves being part of a group, transitions well, no meltdowns. He still doesn't do imaginary play (will join in if it's modelled - his imitation skills are excellent - but not spontaneously), likes to initiate games/play by bringing toys over, miming game, shouting catch or kick etc.

He's potty training atm, gross & fine motor skills are age appropriate (has just started using a cross pattern on the stairs, learning to pedal) as are his other self care skills. Nursery aren't aware of his autism diagnosis (& we intend to keep it that way unless someone can provide a compelling reason to tell them), he gets extra support for his language difficulties. Cognitively the paed put him at around 40-46 months - he's very good at puzzles, knows colours, shapes etc - though she only spent 15 minutes with him so really what does she know.

The only help the diagnosis has given us is 45 minutes a month of SALT with the 'complex communication difficulties' team which (we've had two visits now) consists of 'keep doing what you're doing' or 'read More Than Words'. They aren't interested in ds only some stereotype of 'autism boy' & are constantly surprised when he can do what I claim he can 'oh his attention is good isn't it!' 'he does like sharing with us doesn't he'. We also get an hour of portage a week where they set targets such as 'build a tower of 4 blocks' (WTF) or 'respond consistently to name' (with no advice as to how that's magically going to happen). We provide ds with 8 hours of 1:2 with a very experienced (ABA methodology) CM, 6 hours 1:1 ABA (will increase to 12 hours when we've got some funding sorted out), and 6 hours of nursery (with 1:1 from the SENCO) a week, swimming & BIBIC activities for OT. As well trying to make every waking moment a learning one.

DS will not be educated in mainstream state education, we will not be asking the LA for anything - no statement. So ... getting to my point ... what can the paed offer DS? Why are we going back to see her? Is there something missing that I should be demanding? Is 45 minutes a month is really all they've got.

It is still very early days since the asd dx, just give yourself a bit longer to get over the shock, and even if you were expecting it it still is a tough time.
I get the feeling from your post that you don't totally agree with his dx?

I know what you mean with going from 'a child with language dealy to a child with terrible prognosis', thta's how i looked at my ds in the first 6 months after paed said it was asd (last april, so not that long for us neither) it was almost like my ds had been suddendly replaced by another child that i didn't really known, !!! (sounds a bit dramatic...) but recently it has become a bit easier to look at things on a more positive way (even if he is very challenging atm), DS hasn't changed it was just that i was looking at him in a different light iyswim?

Can i ask you why isn't your ds going to get to a MS school? From what you say from your post his needs don't seem so severe that MS would be totally impossible without giving it a try anyway.
Unless i'm mistaken in my assumption in which case i apologise in advance.

For your question, it may be that the paed wants to see how your ds is doing and review his needs again in case of changes in behaviours,... and maybe to see how you're all doing in these early days post-dx.

I've always found these age things hard to understand - 40-46 months. Apart from puzzles which DS1 is poor at, he has known the other stuff for a long time (he's 5.8 now) but I'd struggle to put him at his younger brother's (NT 3.1) ability for anything cognitive - though is better at sleeping and eating (which might annoy NAS !). There's no real need to see paed (ours is worse than yours if you can believe that !) but i've seen it more as a box ticking exercise on our part.

One thing I would say is that when DS1 was 3.2 he had no stims or obsessions but he certainly has them now but professionals/NAS can be surprisingly vague about ages/timelines in ASD development - it is still development therefore nothing is set in stone.

Ooh your ds sounds a lot like ds3 at that age! He ahs a dx now but didn't get it until later.

Like the others said, they can change somuch and personally I wouldn't close any doors (I have 2 with asd and experience from elsewhere also).

DS3 now ahs language at a level thats ahrd to explain- lots ofwords though whether he uses them and can be understood is variable:we'reup to 3 word commands at 6 though, and heck, once in a while he even does as he is asked

OTOH his stims / behaviour / attention issues ahve increased in direct proportion to his language improvement. Frommbeing very passive he is now hard owrk (though adorable) and can be challenging.

here the protocl is for a PAed to discharege at a year post DX but that has downsides- our elder asd child has eating issues and will need an entire new referral tosee his old Paed.

Thank you all ... I've got lots on ponder on.

DS will be educated at home as are my other children.

The paed seemed obsessed with 'behaviours' and dire predications of what ds wouldn't be able to do - he'll hate swimming - nope he loves it, his behaviour will get worse at nursery - nope he manages really well. He'll hate groups of children - nope he loves birthday parties etc ... the list goes on & on & on. We got not one single useful thing from the process & I'm feeling really cross at the thought I'm expected to waste more time (childcare/stress/money) on them so they can tick whatever boxes they need to tick. The report they produced reads like they cut and pasted from ASD for Dummies - I don't recognize much of ds in it & it is full of lies & exaggerations. Is it worth going through the report & asking them to amend the errors?

I don't totally disagree with the diagnosis - I'm pretty sure he's on the spectrum but my aim for the appointment wasn't a diagnosis. From everything I've read about ASD diagnosis it takes ages & is multidisciplinary so the last thing I was expecting was pitying glances & 'so what does autism mean to you ... have a NAS leaflet' . We were there to discuss the possibility of diagnosis & in what way it would benefit ds - so far it hasn't benefited him in fact it has actively harmed him (hence not telling nursery). He is being written off - the only purpose of any therapy we've been offered (i.e. SALT) is by their own admission to manage potential problem behaviours so he won't be a PITA at school. Those professionals who've spent most time with him (ABA consultant & private SALT) are not entirely convinced by the ASD diagnosis, time will tell I suppose. I certainly don't feel the sense of relief that I've seen other parents talk about after diagnosis

What it has done is meant that I've wasted a huge amount of time thinking omg is that a stim/is that an obsession ... is he playing with that toy for too long etc. I hate wasting time worrying if he is going to develop X problem at some point in the future ... if I didn't have the shitty prognosis hanging over us I would simply deal with issues as they arose.

Cyber I agree with the age thing btw - I think it's meaningless ... socially & emotionally I'd say ds is similar to a 2-2.5yo but does it matter?

He isn't remotely passive though it does annoy me that is a child with an ASD diagnosis isn't a nightmare they get called passive ... why is that? He has preferences & gets irritated & refuses to cooperate at times like any ... dare I say it ... normal 3 year old.

Wish I'd taken more notice of Greenspan & managed it all myself tbh.

Well ds3 is passive- so some children with ASDare.

But some Paeds don'tknow about many kids above the stereotypes- and asd doesn't work like that.There is only 'many kids with ASD have.....'. DS3 is outgoing,loving, joyous. He is also increasingly mired in stims and rituals, and obsessive in real signicant amounts- but that withdrawn child thing isn't him.

Nt that he's a friend mind- has no concept of being friends outside a specific situationand the work it reqiuies, sort of bounds up to fmiliar adults laughing and kissing. Lovely though.

I seriously would hang on to the DX. Greenspan talks sense, but tbh if you want to ditch a dx it is possible with a reassessment, whereas life is unpredictable and a dx might be usefyul. HomeEd is great (and I have and would do it agin with ds2/3/4), but if you got sick or even died- it would be ueful to have the foundations of a statement there on a JIC basis I think.

Also, it is impossible to predict at 3 how a child on the spectrum will develop.Many will end up being HFA or mirror AS (forAS there should have been no language delay as a child), but whilst that's often not an issue at 3 as an adult people with those needs can benefit from extra support around things like employment, mental health, oreven areas that seem no issue at all now.

I wouldn't be too surprised at the lack of input you'regetting either tbh, its a well known fact that early DX leads to a better outcome(research absed evidence)- however typically imo provision lacks well behind in this and unless you cn access portage or earlybird, then you are unlikely to get that value.

If you'relooking at actual help and moving forwrds, I might suggest you conatct a group called BIBIC- theya re categorically neither ASD specific nordxdependent, but useful for halping therapies which IMO would work wonderfully in a HE environment (indeed, thats what we did with ds3 for a while).
They charge IIRC £50 for a 2day assessment that focuses on yur childs actual needs rather than DX, and produces lots of paperwork and actual real usefulideas to move forwards. Google them. I strongly suspect they would appeal to Greenspan fans (I am undecided on where I stand on him).

A dx is a complexthing in terms of what it gives, and also how it affects us emotionally. It takes years IMO to adapt (as in, ds1 is 4 years post dx now and I still ahven't always). However its something that can be placed in a drawer and used if ever needed. Quite typically 4-6 is a hard age with asd kids,and then puberty. If needed it copuld be invaluable then.

A lot of what HFA is about as well if he does attain that level(and ds3 was way behind him at3) is selfidentity: a lot of adults in my family are typically AS but had no name for it bcuase it is so new. The senseof relief when they have a name is palpable- its sadly soeasy for a child to grow up thinking there's something wrong with them because they are not the same aseveryoneelse-and despite what we try there are afewthings that are very ahrd to tackle,such asthe mentalmaps needed for social situations. The big red light forme was when I stood in a playground with a hundred other mums and realised I didn;t know how to approach a aprent I needed to talk to- a friend on the PTA. I simply had no mapforhowto do it. Thoselittle things that seem soeasy when you have no asd traits arethe littlethings that can make you feel as the clasic thing goes 'thealien in the playground' and even 'wrong'; HEcan helpwith that but tehre will be sits where it is relevant eventually.

With the HE areyou looking at a specific asd therapy or following a more general educational approach? I drove myselfmadtrying to follow standard reading etc with ds3 but his Sn schoolgot him reading in weeks with their approach,so it would be worth looking into it.

Sorry- I am not at all sure my post makessense .

my ds was a v. placid baby, v. loving, hardly cried the first years, if i was not aware of ASD i would never have guessed he was. but running in the family, the lack of talking (only really got going around 3) the signs were all there. his just turned 4, and his changing, anxiety is creeping in, and the need to be in control etc. also his sound sensitivity only started at the beginning of the year, licking this summer, hand flapping - hmm now! at the moment still loves swimming (well being in the pool), gymnastics, nursery never been a problem (but might be becoming one).

I've been offered v. little help, 1:1 1h at day at nursery till jan! to me the knowledge relief came from dx, i can read the books and try and understand as they arise. why are you worrying about x problem when you do not know if it will start? my worry is the bullying, self esteem etc

NHS only seems to work on a we have no money wait and see basis until to late , so all DIY. surely its better to be in the loop than outside it, you never know some help my come from it in the future.

I can totally agree with you on : "What it has done is meant that I've wasted a huge amount of time thinking omg is that a stim/is that an obsession ... is he playing with that toy for too long etc. I hate wasting time worrying if he is going to develop X problem at some point in the future ... if I didn't have the shitty prognosis hanging over us I would simply deal with issues as they arose."

We are still waiting to be seen by cahms to eventually confirm the verbal asd dx for ds ...or maybe not! (after the bombshell was dropped, was sent on my way with NAS website for support!)
There are days when i think 'why did paed ever said that DS has asd'(it would have been easier never to hear it)...why say it if all the professionals involved cannot all agree 100%.
SALT says ds has moderate-severe sli and autistic traits but not asd, EP seems to agree with salt, paed says ' ds is on the spectrum...but could be borderline!' Argghhh!!!
All of this has opened an ugly can of worms for me and DH.
And so far we have had no help from professionals re: challenging behaviour, the only good thing is DS got a place in a language unit until he starts school next year (and that subject to condition he doesn't get a confirmed asd dx by cahms or he'll be kicked out!)

I understand how annoyed and frustrated you are, professionals, dx process, support, help,... sometimes it all seems like a big joke!

MSB, has your paed considered a 3di interview and assessment with your ds? They did it with ds3 and it tends to give aclear yes or no for adx (well, being algorhythm IT absed it has to be clear).

Worth asking about IMO. GOSH seem to be invovled and it gets a high rating rom the Profs I know, it certainly helped us both get a dx and accept it.

VirginPMoS, nope paed said it down to cahms now to do a multi-disciplinary assessment, they will use ADOS and ADI-R apparently. We won't be seen paed again until next april by then he should have been seen by Cahms (hopefully), if he hasn't then i will ask about it.
But Bibic did GARS-2 and DS came up high on the autism index showing that he was indeed very much on the spectrum.
We don't doubt that he is on the spectrum somewhere, but i'm cross with the waiting, the going round in circles, the different opinions of the professionals, and the non-existant practical help from them.

I'dask about 3di, if they ever get it it should be useful.

The GARs is good,many peoplerate that, it picked ds3 (again at BIBIC) before Paedwould confirm, ADOS and ADIr also good but not necessarily universally liked (met a few prefer DISCO by far, often thrid level diagnosticans used to more complex cases).

How'd BIBIC go?

Bibic was great, was a home outreach visit, got a good report from them too, and paed read it thoroughly .

VirginPeachy, IKWYM about 4-6 being difficult, and puberty...my 2 DC's that are ASD are DS 6yo, and DD 11 yo...NOT a pleasant time in our house. FWIW mysonben, you sound like you're doing everything you can for him, and while not all ASD kids are 'typical' for ASD, and how the 'experts' expect them to behave, I have to point out that the problems my DC's faced at 3 yo are completely different to those that become apparent as they get older, and are therefore 'expected' to be more self-resposible. IMO THAT's when the difficulties really show their face. At 3yo, the main problems are developmental delays etc, at 8-9, the lack of ability with organisational skills (an essential life skill) becomes apparent, i.e. working to deadlines, telling the time, even packing a bag or getting dressed by themselves, and interacting with others, which my DD was fine with at 3yo, but she doesn't understand the nuances of body language etc that is all too importasnt to teens and pre-teens. If there's no funding in your area for early interventions (like in my area), it's as you say, just managing problems as they arise. You are doing enough for him, and I hope that you feel the same as I do, that a DX of ASD ISN'T the end of the world, it just means that your DC will have to maybe work around problems in a slightly different way to 'NT' children. Good Luck.....

DS1 turned 10 last week dn men in DHs family hit puberty at 11/ 12, eeeeek

v. interesting thread - I know I'm being tetchy but I'm still trying to get my head around the whole thing.

BIBIC - we visited BIBIC in August & in some ways it was excellent. The developmental assessment was really useful but the programme they gave us was pretty much sensory only & ds doesn't have sensory issues (BIBIC agreed but gave us the programme anyway just in case).

HE - we educate autonomously, though dd1 has chosen a structured approach (at the moment!), until there's a reason not to we'll do the same with ds ... he's enjoying his ABA sessions most of the time so those will continue for the foreseeable future. There are so many HE'd ASD children, in my group of HEing friends a huge proportion of children are on the spectrum (diagnosed or not) & it does reduce many of the problems that I see older ASD children experiencing (anxiety, depression, bullying). I feel that for ds it is much safer environment & he'll have longer to mature & develop before he's put into socially demanding environments - the HE world is very tolerant of oddness.

My family is littered with ASD-type people & we're all okay, unconventional (self employed, academics, home educated etc - I can't imagine many of us would pursue a career in an office or public facing) but pretty happy & successful. Apart from the language delay (which keeps me up at night) there is nothing that worries me or strikes me as odd about ds' behaviour ... his asd traits/features/whatever just aren't a big deal to us. My dd has & has always had many more secondary features of asd (language delay with stims/anxiety/food & sleep issues) than ds as does my nephew (motor features & language issues).

DS has had CARS done three (!) times & has a range of scores from 31-35.5, his GARS test result was in the 80s . I have such huge doubts about the validity, reliability & ultimately the purpose of this process.

CARs is only meant to be a guideline and I have yet to find an NHS professional usiong it (I meet alot,amtaking MA in asd LOL)

Likewise GARs really, they seem to adore it, but not actually use it. May just be PCT policy, orcould be something else but we haven't been told.

We ahd a 3di assessment and that was good for ds3 who is bordering on a PDD-NOS dx as he is confusing for Professionals who don't see tier 3cases often. DS1 has his dx via the satndard ADIr route, ADOS is only admninistered here at 3rd level.

ASD kids are variable but becasue of that unpredictable. You know your child best but 3 is so young that he only recenlt wopuld have got a dx at all. I'd take a watch and see approach (asmucha s anything becuase of my own exxperiencesas an undx'd Aspie) but it has to be a result ythat works with you and how you function. It takes ytime toadjust- it follows the same process as a bereavement and I would say needs at least a year but of course that varies again.

Aslong as his langauge is delayed he needs some kindof DX, do you know what the scenario is in your area if he did have to enter school?I know that without a dx you can't get a SNU ASD place,and with even a professional suspicion of ASD you can't get a SLI Unit p;lace(we were stuck in that interminable roundabout for ages). It is always worth having one eye on the system- I know a lovely HE'ing Mumsnetter whose AS son chose to go back to school at 13, it can happen.

But in all honesty my experiencce tells em that you can't tell where a child will end up. family history is all very well (in our family- me, Mum, Grandad, DS1, I'd place money on ds4, traits in DH, OCD (related) in MIl.....) but of all those Aspies suddenly we brewed more severe DS3. At 3 I had no idea how he wuld be now- adorable, language improved but hyper and challenging- and I am glad I pursued the DX when he seemed manageable as it is invaluable now IYSWIM.

Whatever you choose of course, I wish you luck.

Peachy I appreciate the different perspective, thank you

DS' diagnosis was made purely on the basis of his BIBIC CARS test result - I'd advise anyone in a similar position not to tell the paed they've had the test done - at least that way they will be forced to do a more thorough assessment.

phlebas - not going to offer any advice on the asd aspects, but we have always treated our paed as a gatekeeper to any services we do wish to access... a certain amount of sn-parenting is 'playing the game'.

we've been reasonably lucky. as we move a lot, we've had to adjust to many different consultants, therapists etc. some are fantastic and take the time to get to know a child. some don't.

can you ask to be referred to someone else if you feel you are not building up a great relationship with your current paed? at our old cdc there were 4 paeds - it was not unusual for a child to transfer between paeds, or to be referred on for a second opinion.

i do agree about time taking the edge off always being on the watch for 'additional' behaviours/ quirks etc, though. it took about two years after official dx (we had self dx 18 month prior) before i stopped over-analysing dd2's every move.

madwoman there seems to be only one paed who deals with ASD.

DH is going to come with me next time (last time I had to go on my own which didn't help) and we're not taking ds (I don't like talking about his difficulties in front of him, especially when he isn't able to offer an opinion). We've decided that we're going to be reasonably honest re our concerns (my experience has taught me it is best not to offer information unsolicited to the HCPs because they twist it) & ask her what she can offer now & in the future - if the answer is nothing or no more than now then I'm going to try "thanks see you in a couple of years unless we need more help" - surely they can't make us go?

Am I missing out on something that I should be asking for? Is there something helpful that I don't know I need?

I think the helpyu need is referral to a thertiary level diagsnostician. if they can't offer you that in your PCT, others take external referrals.

A single report PAediatric report is a dodgy dx at best. A credible dx takes at least 3 reports, one of which should be from a PAed or Psych who is able to dx- for our boys we had SALT, Paed, BIBIC, Ed PSych and DS3 had OT and PT as well.

The BIBIC reports were a massive bonus to mebut becuase they were part of a vast mutidisciplinary assessment that took years.

I'dlove to know where you are based- some areas have a rep for poorASD services but yours sounds particualrly bad.

peachy we're in a big town in east berkshire that doesn't start with s or w (!)

Berkshire has a rep.

Any chance of moving??

no chance, it's only having my family close by that's stopping me jumping off a bridge

Know that freling sadly.Wemoved, had to anyway for Uni, but being away from family is ahrd work to put it mildly- nobody elsecan babysit or anything so it gets hard at times,like yesterday when Imissed poor ds2'sschoolplay becuase they put a sibling ban on (have a toddler).

Moving did help in that we landed in a system that works for sx, but its never all good and there's no SSd provision of any kind here.

Might be worth you thinking about joing the ttr forum? (look in sn section)

Hi Phlebas,

Greenspan actually mentions the leaflet thing...... your paed. hasn't figured out who's in the driving seat here, has s/he?

I recognise everything you are saying. Do you know my story? (I used to be lingle). I have declined dx and anyone that knows me would hesitate before attempting to hand me a leaflet about my own child.......

I'm picking up from the tone of your messages that you will gladly accept any useful sensible help that is on offer, indeed push for it if necessary, but that the team around you needs to recognise that you and your DH are the team leaders. I think good doctors, like good midwives, are only too pleased to see a parent who is really getting the work done, and should be able to fit in with your style. So hopefully you can be pretty upfront and ask the "what are we aiming to achieve through this appointment and what more can you offer us?" question in a constructive way,

If you would ever like to chat, email me at [email protected]. Chances are we might already be acquainted, as half the people on here seem to be academics or married to them.