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the truth regarding asd dx...???

(52 Posts)
mysonben Mon 06-Jul-09 14:34:49

I get the feeling that apart from the paed (who gave us a verbal dx of asd and a written report in which she mention talking to me about asd and a possible full autistic assement in the next few months), nobody else seem to agree that a formal dx would be the best route for ds.

Ok his nursery and senco have concerns and he is been refered to an EP. But i was told by the nursery manageress that a formal dx is usually not given to children under 5 (school age) unless they present with very OBVIOUS asd symptoms.
She went on saying cases like my ds who has subtle and not clear cut visible symptoms are usually follow and watch closely but not dx until school!
She also said they had been chocked to learn that paed had given us a verbal dx and shocked by the content of her report. WTF???

I'm confused these words are from the same
people who tell me ds has difficluties with speech, social interactions and play impairment,and they feel he needs extra support.
It seems lots of dc here on MN have been given dx under age 5.

mysonben Mon 06-Jul-09 14:42:33

I meant to say my ds ticks the boxes for the triad, but has fewer not immediately visible secondary symptoms such as 'eye contact is fleeting sometimes good , sometimes not", stims are not in your face type of stims, a few rituals and routines but not too obvious and he does show some flexibilty, the same for sensory issues apart from the noise sensitivity he is quite mild.

But surely as long as the child has impairment consistant with the triad, then a dx could be given before age 5 , no?

mum2fredandpudding Mon 06-Jul-09 14:44:05

it must be so hard to have all these different people telling you different things. Argh. I fee your frustration.

How much first-hand experience does your nursery actually have with ASD or children who are borderline? I know that the nursery i have enrolled DS1 in have only ever had one child who was ASD and admtted to me that they were unfamiliar with the dx process(but totally supportive of the paediatrician specialist's assessment). Are they in a place of knowledge to be saying such things?

My ds was diagnosed at 2.5. And whilst he has problems with all 3 key areas, from all my research and reading, I can't help but feel he is towards a milder manifestation of asd and that his case maybe might have been one with a bit more grey in it.... hmm... dont know... Perhaps he just lacks in a few key areas that borderline kids are not, which is why he was dx'd. I dont know.

debs40 Mon 06-Jul-09 14:56:11

I think people are reluctant to diagnose ASD quickly and this is surely right. No one wants to attach labels unnecessarily. I am appalled when I hear people talk of their children being diagnosed in a chat on the telephone etc!

Personally, I think the only point in obtaining a dx is if help is required. This can enable access to that help. Otherwise, we are labelling people/children for no purpose.

If you are being told that he requires extra support, is he getting it? A dx may help him but this can be a long process. I would stick with your paediatriican and let them lead the dx process. This is not a decision made by a nursery manager or their SENCO

dinosaur Mon 06-Jul-09 14:59:01

Certainly both my DSs who are on the spectrum were dx'd well before the age of 5. I would just listen politely to the nursery manageress but put your trust in the paed, iyswim.

Best wishes for what is a confusing and difficult time sad.

coppertop Mon 06-Jul-09 17:03:00

The nursery manageress is wrong about the age of dx. Ds1 was 3.5yrs when he was dx'ed with ASD. Ds2's case was not so clear-cut but he was given a provisional dx at 2yrs and it was made official when he was 3.

I think the nursery manageress might have confused the age of getting a dx with the age a child often is when it becomes more obvious that something is different about a particular child. Behaviours that can be put down to typical toddler stuff at say 3yrs are not so easy to explain away at 5yrs.

I'd take the word of the Paed over the nursery manager any day.

troutpout Mon 06-Jul-09 18:35:06

i imagine it depends where you are in the country. They are reluctant to dx here under 5 too and just talk about 'speech delay' or developmental delays.
I'm sorry you are finding it so frusrating and confusing mysonben.

HecatesTwopenceworth Mon 06-Jul-09 18:38:04

My boys got a diagnosis at 2.5 (ds1) & 3 (ds2). It meant access to specialist services, like the early years team. and a home visiting teacher. By the time they went to school, they had statements. It was invaluable.

PeachyTheRiverParrettHarlot Mon 06-Jul-09 19:07:38

our experience isthat theywaited until school agewith ds3 although hewas clewarly labeledassn early on, with ds1 hewasdx'dat6 but novody took any inerest in him at all until 5.5

PeachyTheRiverParrettHarlot Mon 06-Jul-09 19:11:43

Oh I am great beleiver in labels under the system we currently have

It should be possible that a child can get a tick box of SN- no dx and then immediate acess to services, at which point the DX will become only useful if wanting a specialist palcement of for similar reasons

However that is not the case, sn services have mroe gatekeepers than Buckingham palace so anything that oversomes a hurdle is a good thing.

If a child gets a dx at 2.5, access to SALT etc then is found to have SLI instead- so? A good deal of the support for kids with ASD is not only useful but best practice with all kids (eg visual timetables, social skills work) and at worst it's a anme nothing else.

HecatesTwopenceworth Mon 06-Jul-09 19:37:40

Oh yes, those labels have helped my lads SO much!

Shame that it has to be that way, but you do what you have to to get the help, don't you?

Can I do small hijack to ask how you are doing, Peachy? Been ages since our paths really crossed.

debs40 Mon 06-Jul-09 20:01:40

My son has been referred for help to OT, physio, SALT etc as part of the dx/assessment process. I don't know how other areas do this, but here it appears that the problems are addressed as a priority before a label, if any, is attached.

amberflower Mon 06-Jul-09 22:21:10

I would definitely agree that it seems to vary depending on where you are in the country and the view of individual paeds/NHS trusts/LEAS.

My son received DX at 4.9 years with only a very few traits shown, yet I have definitely seen posts from other MNetters whose children have been identified as having a few ASD traits but told not enough to qualify for a DX.

mysonben it does seem as if you are being given inconsistent messages from your nursery though. They are the ones flagging up all of the concerns re your DS and from your previous posts I would have assumed that they would at least have realised that an ASD DX was possible?

electra Mon 06-Jul-09 22:47:17

Message withdrawn

electra Mon 06-Jul-09 22:48:54

Message withdrawn

mysonben Mon 06-Jul-09 23:45:54

Thanks everyone.
I will listen to the paed regarding a dx from now on, (too many cooks spoilt the broth ! wink)and really come to think about it if dx were not made before 5, she wouldn't have told us that she will review ds in the autumn to discuss the need for a formal dx (i guess that is what she meant about "an autistic assessment" probably a multidisciplined type of assessment).

The nursery manageress is well meaning, she is a nice approchable lady, she ,her staff and the senco are helping ds with strategies the senco put in place for ds, they also work with ds and 2 other children in what they call their language group with turntaking,sharing, social stories, games...
They fully backup the senco for refering ds to an EP for more support for when ds starts school in sep.2010.
DS is allso receiving salt at the moment.
So they are helping but maybe sometime get ahead of themselves with advice based only on THEIR PERCEPTION of asd and not through knowledge and/or personal experience.
A lot people do that don't they? Relatives, friends, neighbours... i need to learn to filter all that advice the good from the bad and let it stop worry me.

mysonben Mon 06-Jul-09 23:49:51

On a good note , i updated my profile with pics of ds grin , i love peeking at other MN s' pics so i thought i'd put a few myself.

misscutandstick Tue 07-Jul-09 08:05:37

just a quick note gotta run:

DS4's paed Dx him at 3.10 after 2 sessions of meeting him hmm but i was convinced he has aspergers, but its really NOT apparent to school at all.

DS5's paed wont diagnose at all, and hes been seeing him now since he was 3mths old (first was faultering growth, then developemental issues by 18mth), DS5 is now 3.2y and its glaringly obvious that he does have autism (quite severe), with ALL the usual symptoms and history (ie regression at a year old). but still no Dx other than GDD.

So one child with symptoms that only some see and a Dx. The other child with slap-yer-face symptoms and no Dx. It seems that it depends entirely on pot luck who you work with.

I knew by 18mth that DS5 is autismic grin (whoever gave us that phrase, thanks!!!) and I think that makes a HUGE difference. wether or not you know whats going on. wether or not the school, paed, or uncle Tom knows, doesnt matter, mentally speaking, its us that counts.

so i understand your frustration. My feeling is, that if you have researched (and i bet you've done hours of it, like the rest of us) and you think your DS has ASD, then he probably does.

The next step is: knowing this information, what can you do to help? I personally feel that when you know WHY a person is the way they are, then its easier to accept their differences and be more understanding (note i didnt say have more patiance!). good luck, have faith in yourself, you are a fantastic mum. xxx

electra Tue 07-Jul-09 09:27:27

Message withdrawn

cjones2979 Tue 07-Jul-09 09:35:37

My DS1 was 2 when it was picked up at nursery that his speech was delayed (only 4 words), and that he didn't use imaginitive play. He had always liked building blocks, and laying them out in a row, and watching the washing machine spin but no other obvious signs.
Doc wasn't worried at 2 and told me to come back in 6 months if no improvement with speech.
There was no improvement after 6 months, so took him back to the GP who referred him to a paed. She then referred him for a second opinion. At that point, they just put it down to developmental delay and said they would see him in 6 months.
It was then at the next meeting when he was 3.2 that he was formally diagnosed with ASD (on the mild end of the spectrum). This had never been mentioned before and came as a bit of a blow! They actually said, and I quote "He is a child with Autistic traits rather than an Autistic child".
My DS1 sounds very much like your DS mysonben in that he didn't present with many traits, but they still dx'd early on.
However, he was only seen by the paed once a year until he started school last sept.
We did have some early intervention from SALT and Portage but that was it. It was only when he started school that we were informed by the SENCO & Outreach that they felt he was somewhere in the middle of the spectrum (more and more traits have reared their heads over the years), and it was then that we started the process of statementing as it was apparent he needed a lot of extra support at school. His statement was agreed pretty quickly, but I wish I had known a lot more prior to him starting school so that I could have tried to get him more help beforehand.
Sadly, I didn't know about this website until recently and didn't know anyone with a child with ASD so could only go by what the professionals told me.
At the end of the day, you want the best for your son, so do what you think is right. It is not up to nursery to say when he should or should not be dx'd.

PeachyTheRiverParrettHarlot Tue 07-Jul-09 09:41:05

Hecaye- (sorry for hijack everyone) we're OK yes. DS3 has settled brillaiantly into his SNU- doing very well. After thinking I was mad whilst everyone else told me he didnt need it, everyone now says it was obviosuly right PMSL! DS2 being assessed for dyspraxia soon, ds1- bit of a wory atm, eating resolving (yay!) but now decided that way to prevent getting in to trouble is to sit alone all rbeaktimes, and school encouraging so will need to sort- ds4 is OK but we're a bit eeek as his language isn't developing well and he seems to have lost a bit of ground but has been ill so fingers crossed its just that. DH looking forwards to Uni September and I have found a childcare setting willing to consider ds12 in 2010 which would mean I can do my PGCE aprt time grin.

So, quiet then PMSL!

How are your lot?

wasuup3000 Tue 07-Jul-09 09:56:06

mysonben it sounds like you are getting a lot of support from everyone involved in your son which is great. It sounds like nursery although they may not know about the ins and outs of diagnosis are doing a good job. It is also great that you have the SaLT working with your son. Once the EP has assessed your sons needs at school she will speak to you and do a report which will advise if a statement is needed. I think if the EP does advise this and supports you further you will have a better chance of getting a statement than if she doesn't. Although some parental requests can be successful without this. Either way its nearing the end of the Summer Term so you probably won't see the EP until the Autumn Term unless she was to do a home visit in the holidays.
The Paed will be interested in what the EP thinks as well.

mysonben Tue 07-Jul-09 15:15:23

Thank you ladies for your replies.

Miscutandstick- oh yes i have done my research into asd ,i'm not saying i am an expert but the more books and info i read the easier it is to see and identify all of ds' problems.
I am now certain he is asd (although i still have some days where he seems to behave so NT when i can't help but wonder and hope i'm wrong.)

Wasuup- yes since that verbal dx and report by the paed sent to all concerned, the support ds has been getting has more than tripled, which is good. I'm grateful for that.

Electra- i believe ds does not have 'classic autism' , he also doesn't fit a dx of AS becuase he is speech delayed, HFA possibly but at the moment he isn't showing any real gift/talent and he doesn't tick all of the boxes for clear cut autism, although he display difficulties within the triad i would say apart from the language/communication which is very obvious , the rest is fairly mild and not always obviously visible at a quick glance by someone with little knowledge of asd, iykwim?

fanjoforthemammaries7850 Tue 07-Jul-09 15:30:48

I was told yesterday by educational psychologist that "very few of their kids receive a formal diagnosis"..which is a bit frustrating. I think DD won't get one, she definitely has some ASD traits but too many NT ones for it to be clearcut.

PeachyTheRiverParrettHarlot Tue 07-Jul-09 15:57:56

FAnjo, if you keep n the system there's good chance you'll get one eventually, I find that they age the ASD traits become clearer- certainly with my boys anyhow.

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