Active discussions

Please or to access all these features

Talk
SN children

Here are some suggested organisations that offer expert advice on special needs.

Original poster

Do I except formal diagnosis?

35 replies

MilkshakeMonkey · 05/11/2015 16:34

DS (5) was referred back in April due to behavioural probs (explosive, angry, violent outbursts), struggling to make friends and some oral sensory signs.

He has been up and down for years and we are on a better wave at the moment. Friend issues seem to have improved and he is doing really well at school - academically over a year ahead of where he should be and not disruptive to class.

We had our 2nd paediatric appointment on Tuesday and in his opinion DS has asd. He asked if we wanted to accept the formal diagnosis and only to make it official if we feel it would benifit DS.
I feel confused (I find it odd I get to choose).
DS doesn't need any extra help at school, so doesn't need funding.
As I understand from a parent point of view, diagnosis won't change anything - I just need to research and try different techniques with him.
Paediatrician said we would be offered genetic blood testing if we accepted diagnosis, but would I be able to do this privately if I wanted?

I don't want my son being labelled.
I don't want my decision to hinder him in the future (job applications, driving license, ability to travel, insurance).

I would appreciate people's opinion as I'm feeling so confused. I just want to do the right thing by him.

OP posts:
PolterGoose · 05/11/2015 16:42

This reply has been deleted

Message withdrawn at poster's request.

PhilPhilConnors · 05/11/2015 16:45

My son has HFA. He goes through waves of relatively good behaviour, where strategies work well and things are calm. He also then has times where things are really difficult, so I'm not sure I would not accept a diagnosis because things at the time are calm.

I assume things were pretty bad for you to go down this route in the first place?

The assessments are very thorough, and a diagnosis wouldn't be made unless those assessing felt he ticked enough boxes.

I think 5 is maybe a little young to know whether he will need any help or not, as it's quite common for children to go to pieces when work gets harder and when their peers develop socially more quickly. If he does find things difficult as time goes by, a diagnosis would/should mean that help is more accessible.

A diagnosis doesn't label a child, and if he doesn't need support in school it probably doesn't need to be disclosed. I don't know about job applications, insurance etc though.

Youarentkiddingme · 05/11/2015 18:53

Having. 'Label' of autism does not affect insurance, ability to drive etc etc. It does give protection under the DDA.

As polter said - if he's autistic he's autistic. Like everything in life his ability to do stuff will determine if he dos it or not - eg drive. Not a dx of asd.

chocadd1ct · 05/11/2015 19:49

it is a diagnosis, not a label Hmm.

you won't have to declare it when you apply for a job or a driving licence. not sure where you read this. not sure what kind of insurance you worry about.

if he is only 5 and indeed has ASD (and usually doctors only diagnosis when they are really confident even though the daily fail tries to convince people otherwise), the it us much more likely to become an issue once he gets older and a diagnosis will make a difference then.

DobbinsVeil · 05/11/2015 22:01

I've only heard this anecdotally so have no links to evidence, but the paediatrician who dx my DS1 at 3.2 said 10 years or so ago he would have been the kind of child who wasn't dx til nearer 7. He said 7 was the age things could really start to fall apart at school due to the jump up to junior school behaviour expectations.

If your son doesn't need help now are you happy they will provide it if things change? Has the paediatrician given you any kind of deadline to accept? If you don't go for a dx now will it be easy to get another referral in 1/2/5 years' time?

You say he was referred in April, how long have things been on more of an even-keel? How long was the explosive behaviour in April ongoing for?

I don't think you should feel pushed into accepting a dx if you really don't think it fits/will help. That said I think in your position I would be at least deferring declining until the calm had exceeded the storm.

anya1985 · 05/11/2015 22:03

If your son has autism he has autism.. I can't understand how a diagnosis and outlining his difficulties and strengths can hinder anything to be honest. You say your son has behavioural issues, would you prefer him to be labelled as the naughty boy and you the mother who hasn't brought him up properly? Rather than the boy who acts the way he does coz of his issues that you are working on?

Sorry but you not going for an official diagnosis doesn't make him any less autistic (if he is for sure)...

LyndaNotLinda · 05/11/2015 22:10

Diagnosis changes a lot of things actually - it makes it easier to get help at school (it's a shortcut to the SEN register rather than waiting for your DS to melt down), makes it easier to get DLA, makes it easier to access all sorts of other services. And your DS might not need a EHCP now but he might in the future.

You don't have to tell anyone if you don't want to. It's a private medical record. But my son's DX has really helped him understand why he's not the same as the other children and for that alone, I'm very glad he has it.

Jerbil · 06/11/2015 01:14

We had a choice! We had to move DS1s care to a different CAMHS if we wanted his (second opinion) diagnosis to be recognised. It was difficult to do as we had been talking to the other CAMHS for 2 years about his difficulties. However, it was a no-brainer! I have never regretted that move.

Insurance: I always add my child has ASD. Costs around £2 extra on a travel insurance quote. TBH, the fact you've been going to CAMHS and been told this sort of makes it mandatory for you to tell your insurance. Otherwise they may be able to find a reason not to pay out. even if it's totally unrelated.

As someone else said when your DC grows and perhaps needs to apply for a job etc. It is not a legal requirement for them to declare their diagnosis. though depending on the company might actually be advantageous.

The diagnosis for us meant we were believed. DS1 now has a statement and TBH we wouldn't have had this without the diagnosis.

Good luck whatever you decide.

Original poster
MilkshakeMonkey · 06/11/2015 12:47

Thank you for all of your opinions.

Part of my worry is have I just portrayed him so badly that paediatrician made dx.

Is he 'naughty' or 'poorly parented' rather than autistic?

I'm sure I've read some where autism diagnosis can affect visa applications when traveling.

I'm sure I sound odd, I'm just trying to get my head around it. I still don't understand why I get to choose (as any have said, if he's autistic then he's autistic) then it must be a choice.

OP posts:
anya1985 · 06/11/2015 14:45

Sorry if I seemed harsh I genuinely didn't mean to! I remember those feelings I thought what if it's the way I'm explaining how he is that the doc diagnosed him? Maybe I didn't put enough info in the parent questionnaire? Maybe the nursery are exaggerating? These are allll things in our head! Someone on one of the threads once wrote that it's about the child clearly fitting a criteria for a diagnosis, so significant difficulties in (not sure if this is it) the triad of impairments.

It is a very difficult / draining process to go through but as long as to me it explains why he is the way he is it is more than worth it! Good luck X

anya1985 · 06/11/2015 14:48

We even said any child put under the microscope and who goes through such rigorous assessments the docs would find something they are developmentally behind in. That's not the case only if there IS something significant would they get an autism diagnosis

LyndaNotLinda · 06/11/2015 19:33

I would ask why the paed said that. I wonder if he also thinks of it as a 'label' rather than a diagnosis.

All you can do is ask.

Original poster
MilkshakeMonkey · 08/11/2015 08:38

I need to let paed know by the end of the week - as he is locum finishing his stint. Part of me wonders if that is why he has diagnosed, so he can sign us off to other services and he has no follow up .

I keep changing my mind either way. If I accept it would be easier to get help (if needed) in the future. Or I don't accept it, but research techniques etc myself and not have it permently on his medical records.

OP posts:
fanjoforthemammaries7850 · 08/11/2015 08:41

Sorry but undiagnosed autism can cause a lot more problems down the line than visa issues if travelling.

fanjoforthemammaries7850 · 08/11/2015 08:42

It's not something to be ashamed of that you should hide from his medical records. It's how his brain works and an important intrinsic part of him.

fanjoforthemammaries7850 · 08/11/2015 08:46

I also think it's really bad that paediatrician asks if you want to accept a diagnosis, when they wouldn't for any other diagnosis. Really bad IMO.

fanjoforthemammaries7850 · 08/11/2015 08:49

Sorry if i sound harsh.

I see why people feel like this but believe autism awareness and understanding should have moved beyond this point since the 70s.

fanjoforthemammaries7850 · 08/11/2015 08:50

And I feel for kids who will grow up feeling different and not being told why that is.

Original poster
MilkshakeMonkey · 08/11/2015 08:58

I completely see what your saying Fanjo.
I think it's the choice bit I'm struggling with - why has paed given a choice?

OP posts:
fanjoforthemammaries7850 · 08/11/2015 09:09

Personally I think the paed has some outdated views and isn't doing their job properly.

PolterGoose · 08/11/2015 09:48

This reply has been deleted

Message withdrawn at poster's request.

2boysnamedR · 08/11/2015 10:28

The my Ds is non verbal. He has no means of communication. He can't sit and interact for more than 20 seconds. We was also asked it we wanted to accept his diagnosis ( I am pressuring he is severe / profound)

So I think it is routinely asked. We asked what would happen if we said no ( but we wouldn't have). I was told it could take up to two years to get back into the system).

That needs to be a primary consideration. I had to pay almost £800 to get my older boy privately diagnosed at 7.

I know children as bad as my non verbal child starting school in September. But the parents didn't accept the diagnosis.

When the LA are handing out ehcp and places those kids will be below my son in order or priory and the parents could be struggling when they have issues at school ( not really applicable to your situation).

Just a few things to think about. Also diagnosis brings very little extra help. There is very little help out their

chocadd1ct · 08/11/2015 15:14

I genuinely cannot understand how anyone can prioritise visas over identity, emotional well-being, mental health and legal protection from discrimination. I really don't get it at all.

^
This

Youarentkiddingme · 08/11/2015 17:13

When ds has his assessment I had to sign a consent form that said we agreed for asd assessment and accepts that if diagnosed DS wouldn't be able to join the forces. I was Hmm

As DS is now in secondary school system I'm beginning to see just how useful a diagnosis is for protecting him.

Iamverynotcrazy · 08/11/2015 18:38

Why wouldn't they back able to.join the forces? My Dh has autism only recently diagnosed but he was in the forces and it was them that instigated his assessment but never actually affected him being the forces.

Sorry if I have took this wrong.