Is a diagnosis really that important???

[TruckTheBend]

(Namechanged for various reasons)
Have DD (7) and DS (3).
DS has never had any developemental delays, in fact seems rather bright and reached all milestones pretty much in the middle of "normal" range. But he has funny little ways which have really always been there with him but we are now at a stage where other people are picking up on them and passing comment/offering advice/ querying the cause etc.
He gets on fine with other children but has some boundary issues and doesn't always read signals from them to back off.
He tends to repeat back pretty much everything - word for word- that is said to him, although he still carries a normal (norm for a 3yo anyway) conversation.
He has a variety of obsessions which at times bring him coimfort and at other times seem to cause him anxiety.
He has some, but not many, rituals and becomes upset if these are deviated from.
He seems to be over-sensiive to noise and when upset can tolerate almost no noise at all. His eating is extremely restricted in terms of variety and texture though luckily what he does eat is prety nutritious.
There are lots of other little things he does that do mark him out as different and certainly i never experienced these things with DD, but on the whole he is a very happy, confident bright boy. He is loving and tactile, humorous and is very empathetic to emotions etc.
Some family members have commented, but its just from DH's side and tbh they are all a bit obsessed with labels!
I have a friend who works with SN children and although she s being extremely tactful I know she feels we should begin the process of having him tested (seems the wrong word? mind gone blank im afraid)for ASD.
Now I have been approached by mgr at DS's nursery about his "quirks", she did this in a gentle way, it didn t feel as though she was pushing me to any conclusions i rather got the feeling she wanted to see where my thoughts were on it all but i now fully expect a more official discussion where their worries are raised.
The problem I have is that i dont thin i want to go down the route of medicalising him. He is happy and healthy and as a family we will continue to ensure that that is the case.
I ahve to admit that i have looked into ASD and see definite striking similarities but then i als dont see alot of the markers either.
I fully understand that DS would at least be a candidate for testing (again with the testing?! screening maybe??) but i just dont want it, i dont think a diagnosos is necessary and its not like i could go through the process and accept the result if it says he is not on the spectrum but refuse it if he is, is it? If I start this and he gets the diagnosis then theres no turning back, he will be labelled forever.
I tend to think that even if he is asd then he is certainly at the very mild end and can foresee no problems with him in general life.
I also kind of think lots of adults are making their way through the world just fine who could very probably be considered asd. Maybe we are all on there to one extent or another?!
Am I underestimating the situation?
Are others maybe overstating it?
Any experience/ advice/ ideas greatly appreciated.

Oh, and also unsure what nursery/ school could do if they feel there is an issue but it is not something we want to pursue iyswim?
Can they go any further than simply flagging up any concerns they may have to us?
Am i right in thinking that we, as parents, would have the ultimate say so?

There's a very long way to go before you need to think about 'labels' and 'diagnosis'. Have a gentle chat with his nursery teacher, see what she thinks. If he is very different from his peers it's good to have an idea of how he comes across so you can make informed decisions about all sorts of things. all children are unique - knowing what makes yours tick is really helpful.

I can empathise to a degree, but I would suggest that any label would be a means of protecting him from expectations laid on by school perhaps later on - I have a friend with a son who just got a dx at 6. She can now use this is correspondence and sicaussion with the school, who are prone to ignoring any difficulties he has in their efforts to treat him the same iyswim...particular issues get forgotten, they expect too much, overstep the line and really leave him vulnerable.

It could be one reason to get the label, I suppose. You sound like a lovely mum

sorry ds2 climbing on me, discussion was what it should say, and correspondence.

Do you feel as if you are being pushed by others towards an assessment process?

FWIW I was vaguely aware of ASD as my 2 boys were going through primary school. It would have been helpful for us to have been connected to other families with children on the spectrum much earlier on.

Looking back so much of the boys' primary years was affected by their asd. I assumed I was not strict enough, that they were difficult...Luckily I have read loads and am now able to recognise so many traits. So now I feel much more compassionate towards my boys and am moving to being a gentler parent. I don't raise my voice or my hand to them now.

There are lots of helpful threads on the SN section.

...I felt similarly, for some time, having been in receipt of many similar 'nudges' from acquaintances and professionals. Some of these nudges were closer to shoves, in truth.

As a result, I didn't seek a formal diagnosis (Asperger's) until the geeky urchin was 10, and secondary school loomed. I have only just gained this, and he is 12 in May.

I regret this bitterly, as he plainly now is not coping in mainstream education. The later you leave it, the more difficult initiating intervention becomes.

Your child may not need any aid in primary, the Geeky Urchin survived with minimal difficulty until year 5. Secondary school is very different......

The reason for seeking a diagnosis is because that's the way you can access resources and any help for him. He'll be exactly the same lovely child.
But it's your choice, and I know people who've chosen not to go down that route, and not regretted it. It can be a stressful time, and looking into it doesn't necessarilly commit you to anything and you might find you make useful contacts.

Truck, this is such a difficult decision, but one you don't necessarily need to make yet as others have pointed out.

ASD is such a wide spectrum and if you think that his idiosyncrasies will not affect his education too much and you can find a sympathetic school then an official diagnosis may not be necessary, IYSWIM?

I used to teach a boy who I felt was autistic - his mum was also a friend of mine. I brought it up at my first parents' evening with him and was told in no uncertain terms not to go any further with the discussion and not to mention it again. I didn't. We treated her DS with sensitivity and ensured that his need for routine and his quirks were respected.

A friend of mine also suspected his daughter was ASD and was going to have her diagnosed, but once he looked into it, also decided against this route for fear of him being 'labelled'. It's not for everyone.

If you go down the route of a diagnosis this can run away with you - if he gets as far as being statemented then that statement is no longer your choice, i.e. if you change your mind about having the statement you can't automatically have it removed. I work in SEN now and we do have some parents who are trying to have their children de-statemented for a variety of reasons, and it is not always possible. So that 'label' may follow your DS around even if you don't want it.

Can you wait and see how he gets on as he gets older?

her being labelled

With ASD, early intervention is far better than when the child is older.

My DS2 was dx with ASD when he was 2.6. I did not want him labled, did not want him to be known as "the boy with autism" and certainly didn't want him to have to go to a SN school.

I can honestly say that getting him dx was the best thing we done for him as now he gets most of the help he needs and has come on so well since his dx. He goes to both a SN and mainstream nursery (he is 3.6) and can now speak, something he has only learnt to do 6 months ago.

It is a very hard decision to make, especially when your DS is still young. If you feel you can, pop over to the SN board, everyone there is really helpful.

Dd1 got a dx of Aspergers Syndrome last year at the age of 4.9, she sounds a lot your DS, she has had no problems at school so far but i am pleased we have the dx this early on so we know why she is like she is and if she does have problems in the future we will be able to get her the help she needs.

Dd2 (3.1) is in the process of getting a dx fof HFA (high functioning Autism), she's non-verbal but very bright, i feel she needs a dx so people can understand that she is not stupid, she has trouble comunicating but also has a huge brain (she loves numbers and letters).

Early intervention is important and helps in the long run.

I do wonder if we will be where you are now in a ear or so's time. I suspect that my darling dd has Aspergers but then I also suspect that I have although undiagnosed and I'm now in a job that involves a lot of personal interaction/social communication and I love it although I do often feel that I'm playing a role rather than being me.

I really think that the value of a diagnosis can be in the help that your child recieves because of it, if their needs can be met without it and as parents you feel that you understand what those needs are then, imo, there is no need to push towards assessment/disgnosis. However I would add that a child's needs will change over time and as they become older differences may become more apparent and problematic.

"He is happy and healthy and as a family we will continue to ensure that that is the case."

So, without diagnosis, what will happen when he's 16? 18? 21?
30? 40? 50?
Although I hope awareness and diagnostic services will have improved by then, at the moment it's generally a lot harder to get a diagnosis in later life.

"If I start this and he gets the diagnosis then theres no turning back, he will be labelled forever."

My stock reply to is that it's better to be labelled as autistic rather than to be labelled as lazy, obstinate and stupid - just like I was for 28 years.
Upon diagnosis, certain parties are notified, usually only those who have been in contact anyway and only in order to enable them to provide support.
Otherwise, your DS can choose who else to tell and when, if at all.

I think we wasted a couple of years too. Ds didn't get a dx until things had reached crisis point at school, I think if we had pushed for it earlier then we could have avoided a lot of stress for him. Plus something to consider is that dx/statements can take AGES and (as in our case) asd's can have more impact as schooling progresses (especially without help in place) and so although a dx might not seem vital now, by the time your ds actually got one it may seem more relevant. Or not, maybe, but they don't give out dx/statements easily so your son may not get a label anyway. Not explaining myself well, but was in your position and was sure was not going to get ds labelled but in the end it was def. good thing. Not saying will be same for you - just our experience. Hope you can work out what's best for you all.

Spongebrain= why are parents trying to get a statement removed? I've always thought of a statement as a good thing so am genuinely curious.

Took us two attempts to get a statement, they are given VERY reluctantly. Can't see why anyone would turn down help for a child if they obviously needed it?(which they must if given a statement - surely?)

Hello Truck, I sympathise with your feelings...

I think I would look into getting help and support now, diagnosis isn't always necessary.

My ds has been in the process of going for a diagnosis (dx) for asd, since he was 2+ (quite significant language delay brought him to the attention of the professionals, I wanted to protect him, keep my head in the sand, didn't like the idea of labels).

He is nearly 5 now, still no dx, but he gets lots of support, with speech therapy, and one to one at nursery plus early years support teacher twice a week (he was not coping without support) - starting school this year (Scotland) and the school are looking at how to support him with the transition to primary 1.

I don't regret for one second, being open to the people who had concerns, giving my ds the support he needs. The consultant paediatrician is happy to keep seeing my ds and look to give him a diagnosis in the next couple of years - some people need a diagnosis to get support in education etc, but it isn't always necessary.

hth, it is a tough thing to go through whatever you do.

We had speech therapy and 1:1 at nursery and reception class without a diagnosis or statement, although you have to be careful as without a statement nothing is set in stone. In our case, when ds was refused a statement the school questioned why they should pay for 1:1 - which I guess made sense, but left us in the poo poo.

Hi Truckthebend. I was in your position of nursery raising concerns last September. I share your concerns re labels and only agreed to see a paediatrician on the clear understanding that I was not participating in any diagnostic process for ASD. The paed. hasn't really done anything yet to be honest!

I'd recommend continuously asking the question: "What are we doing this for?". Is there, for instance, a programme that could assist your nursery teachers in helping your DS deal with his boundary issues? If so, you and they will want the nursery staff trained in those techniques I suspect. I think it's unlikely you'd need a diagnosis in open the door to this. But why don't you find out what's on offer, and whether a diagnosis is needed to get it?

Meanwhile, you can step up your own work helping him. There is a new book published by Hanen called something like "talkability" which is guidance for parents of children who may have mild ASD to help them with social skills. Hanen is a great organisation and its publications are very well-written and non-frightening. You don't feel that you've labelled your child by working through them IYSWIM.

If you do agree to see a paediatrician, s/he will probably just scratch his/her beard for a few years. So the work you and nursery do is the most important thing really. You can probably train yourself to do things at home. Nursery however may find it easier to get extra training/resources if you at least agree to having a relationship with a paediatrician.

Sorry can't help more. our main issues is speech rather than obsessions/boundaries so the speech therapist is the key figure in helping nursery.

nikos, I agree, most parents are devastated when turned down for a statement but we do have two who are trying to have theirs removed - one because the dad has never accepted the diagnosis of ASD and is extremely angry about it, and the other one because their parents want to put her in a private (mainstream) school and feel that her statement is hampering her chances of getting in.

These are, of course, unusual cases.

Hmm I can understand exactly the point of the OP

I have 4 bys, one is only a baby.

Two of the others have a dx of ASD. Absolutely they needed it; a dx isn't essential for a statement ( ds3 didnt have one) but with ds1 we needed it for hsi issues to be given help, and for ds3 to clarify what help would be best. As well as for ourselves.

At the last parents evening we were given test results; ds2 (the non asd one) was screened for sylexia last term with our OK. He came back as dyslexic. And dyspraxic. And ADHD. anda few other things.

And I dont feel any inclination to medicalise him. Or get a statement (he'son schoola ction, escalating to SA+ next term).
he's a very different chidl to the other two, very copeable with in all ways. We didnt even recognise the needs tbh (though admit our view of normality is skewed by the boys). Je just doesn't need a dx, or any more help than he can get.

I have asked the SENCO whom I trust to let me know if she feels its time to take him to see the family PAed 9well she may as well be....) or get the help formalised, but untl then its not needed.
With the others I was driven to get the DX and sattement and it was clearly needed, but I thinka s a parent you can usually assess the amount of support required.

I say usually; there are people who get it all tits up, but IMO they'd be unlikely to post here asking for help anyway

I could have written your post OPer. I also feel the same way about labelling him when if he is ASD then it is mild.

My DS is 7 now and sometimes we have issues but for the most part he functions well and life is good!

Yes it's a balancing act. You have to stay flexible but diagnosis is not a neutral act.