Is it a good idea to push for an 'official' diagnosis?

[allaboutme]

DS (4yo) has been given a verbal dx of mild ASD this week by the paed.
She has referred him for a multi disciplinary assessment after christmas as a next step.
She did however say a couple of things that have made me think they may not want to make an 'official' diagnosis.
She said that DS is doing well at pre-school currently and she thinks he may be fine at school when he starts next year without needing any extra 1 to 1 help.
She also said that where a child doesnt really need extra help they dont like to 'unecessarily label'.
If DS does come out of the assessment with the result of no diagnosis needed right now, then what happens if he does need help later on after all?
Is it easy to get back to where we are now and get a diagnosis later on if we want to?
Anyone got any experience of this? or can offer any advice?

Bumping this for you.

We are quite in a similar situation, we had a verbal dx in april of mild asd by paed. Following observations and reports from senco, EP, and teacher at nursery , we had a review last week with consultant paed and she is refering DS to camhs for asd dx assessment.

Paed said although DS does present with asd traits , she feels DS may be borderline and consequently may not get a dx. Also that as things have been flagged up at nursery , he will be on action + at school, and is currently getting help with his language delay in a language unit. She feels his needs are being adressed atm.
But she also said, she just cannot predict how things will turn out when DS starts school or in a few years time...so hence the referal.

Tbh, i have no idea how easy or hard it may be to get extra help, or to seek out another try at dx later on.
So your question is interesting for me.

I am finding all this dx or no dx quite stressful and trying to make the right decision at times is very difficult.

I'd be interested too! I know people say it's harder to get a dx if you start in the system when your child is older, say 6+ and I think it's definitely harder to get a statement. But if there are already notes on the record saying ASD was suspected at 3/4 years, you'd think it would be easier to get a dx if things didn't go so well later wouldn't you?

Am also in the same situation as you. DS got no dx or anything of the sort and starts school in Jan. Have got an appt for March/April to go back to paed incase any probs have arisen in class. However,that doesn't help me or him 5 years down the road does it......

Personally I would say that if your ds has ASD then it's better to make it official sooner rather than later.

Reception is similar to pre-school in terms of the curriculum but the expectations are very different. Things like interacting in the playground, having lunch at school, or sitting in an assembly hall with hundreds of other children can be real flashpoints.

It's impossible to predict how a child will cope at school IME. I fully expected my ds1 to need a statement very early on but he's now 9 and hasn't needed one yet. I expected ds2 to be okay but he finds school very difficult sometimes. The work is fine but he finds things like playtime, changes to routine, and coping with unexpected change hard.

If I was in your situation I would push for a formal diagnosis....My son managed quite well at school but when he got older...it got worse and especially when the hormones kicked in. He did not get a diagnosis until he was 13...so any behaviour that was not within the 'norm' was put down to naughty behaviour and even I was guilty of that! Now I realise that most of it wasn't naughty it was his way of coping.
I'd insist...there isn't stigma attached to these syndromes anymore and people need to aware.......Tell them you need answers and you need for others to understand too x

I would absolutely push for a formal dx. In fact, if the paed has already said it verbally to you, I would write a letter to her now, repeating what she has already said to you and asking her to clarify anything so she can't back out later!

It's very common for things to get worse, not better, as children grow older, especially when they get to secondary school. And it's harder to get a dx/statement if you leave it until then. Early intervention is best and you'll need a dx to access all of that.

I really don't understand the disadvantage of 'unnecessary labels' except from the point of view of the PCT or LEA who will have to pay for any help once it's been dxd!

Please do push for a formal one. We were told "yes but a formal dx of austim at this time wouldnt be helpful as everyone is managing DD1's behaviour at this time and it doesnt impact on her learning"

5 months down the line, we are having real trouble and so are the school but we all have limited support as no formal dx. She is now self harming, struggling daily and very tearful/paniced most of the time and tells me she feels sad all day Its heart breaking and now we are having to start from the begining and go back to CDAC.
HTH

No dx, no help. Little understanding or adjustment made for them, no recognition of their needs
I don't understand why so many parents are reluctant to go for a label, it's a key to unlocking so much. Each to their own, has to be your choice.

for the alternative view on dx and labelling(which I identify with) read Stanley Greenspan.

Thank you all, some very helpful points there.
Linglette - can I ask what book in particular you would recommend I look at?I searched the name on the library catalogue and there are tons by him so not sure what would be best to look at!
Thanks

We are in the system for a dx. DS is certainly 'high functioning' something!

I hate being stuck in the very slow and laborious diagnostic process which actually seems pretty vague and nebulous and varies with the expertise of the professionals involved.

However, my experience of DS being at school (he's nearly 7) is that a dx will probably help him get the support he needs as that is the reality of the system. Teachers don't understand these things at the best of time and without a 'label' to get their head around, I think life is much harder for parents trying to explain needs, particularly if they relate not to obvious learning difficulties or language problems but to more 'hidden' issues such as executive function, cognition or social communication.

I'm not sure I would have felt the same way before my child started school but my experience of the education system has exposed me to the reality that (as Goblin child said) no dx, no (or very little) help.

Mine is in mainstream y10, he's 15.
Without the dx he is more likely to have been excluded by the time he hit secondary. I use his dx as an explanation not an excuse, a key, a tool, a weapon and a prod. One of my favourite phrases is 'Reasonable Adjustment'
He has no learning or physical issues as comorbids, so his is truly a hidden disability. Fighting for appropriate provision would have been near impossible without knowledge and a dx.
But that is only my personal opinion and my experience of being a parent and a teacher in the system. If you prefer to go it alone, that is your right.

There are three reasons why I think getting a formal dx is important.

Firstly as a parent it's your safeguard. With a statement it is as close as you can get in making sure that your dc gets the education they need.

Secondly, like goblinchild I use DS2's dx as an explanation - people, friends, family, peer group need an explanation to understand and learn about what your dc's difficulties are. The power of that can't be underestimated, particularly, with the peer group and I am hopeful that giving him this label will ensure that he doesn't have other non pc labels said to him which will affect his self esteem and confidence.

Thirdly, I have no idea what the future holds - he will hopefully be a big teenager one day and I imagine that, at times, things will be hard. I am hoping that by having the dx in place that we will be able to tap into services if we need them.

no, i am in suffolk

thanks for all the advice everyone

here you go

www.icdl.com/distance/webRadio/documents/2-26-2004.pdf

I think Greenspan also appears in the film "autistic-like - Graham's story" though I haven't seen it. The second chapter (I think) of "The Child with Special Needs" is about labels and how they can paralyse (some)people instead of galvanising them (note the some there please).

It all speaks to me about our child 100%, but my child is of course different from yours and to all the others on this thread.

Very interesting point about 'hidden' issues such as executive function, cognition or social communication in this thread. Ds2's issues are language based though he was also very delayed in his ability to share attentionand I get the best response from staff by getting them to understand that he is a visual not verbal learner. To be honest, I think receptive language delay and a certain kind of autism are probably exactly the same thing - it's just a question of whether the child manages to catch up which depends mainly on biology but also a bit on surroundings. But if you do catch up, then "autism" doesn't really capture anything about who you are.

Leaving theory aside you have a pragmatic issue too. The paed. offered to put Ds2 for an assessment. 60% of the kids she assesses get ASD dx. I asked her what that could do for us as a family and she immediately answered me (with admirable frankness) "nothing". Then I went to the nursery manager and headteacher and asked what it could do for them as teachers and they (not quite so literally) also said nothing (critically, they didn't want one-to-one support because he was on the brink of being able to play with peers which he is now doing).
The angle I haven't got covered of course is the "what if things go backwards - this was your easiest points to get the DX" but you have to make a decision somehow or other don't you?
anyway, good luck with it.

Sorry - don't mean to hi-jack but was really interested in your post linglette. How old is your DS? Has he started school yet? What has your experience been of that if he has? I am interested as I think more enlightened teachers/schools etc deal with needs not labels, but, that's not always been my experience thus far.

You are so right to say that the label doesn't capture the essence of the child and the variety of difficulties encountered and demonstrated within the spectrum is extraordinary and child specific. This may mean that a label becomes almost meaningless as it may do little to aid understanding of a specific child's problems. I suppose, though, it does give you, as a parent, something to latch on to when you negotiate/demand help for your child. Something that can't be dismissed out of hand as a 'quirk' or something they'll 'grow out of'.

If DS was at home with me all the time, I wouldn't need/care about a label. Outside the home, in school, I worry about the potential impact that autism may have on his development and that this may affect his learning in a way that needs understanding and support. I can start to see that emerging already in small ways as he gets older.

I hate, hate, hate, the diagnostic process though and think it is largely a load of pants, so I can quite understand the desire to avoid it

DS2 is 4.3. He started pre-school at 3.0 and spent a lot of time hiding in the loos flushing the toilets . At that point Bradford Council recommended applying for a statement (bloody hell). But at home his emotional attachments were 100% appropriate though his language problems were huge. His brother also followed a similar (though shallower) developmental path. So the teachers supported our decision to keep him out of school and send him to nursery a second year where he is now blossoming (bloody hell again, he actually has "friends" and puts up his hand to answer questions!). He'll start reception at 5.0. If you search under "lingle" you can see the whole story.