Getting a "diagnosis"

[Perchkin]

What do people mean by this? How do you get a "diagnosis"?

My DS has been diagnosed by EP & SALT as ASD, and by OT as ASD and having SPD. Do these diagnoses count?

Is there an ultimate diagnosis that is accepted as gospel? And who by?

Sorry to sound so dense. Still feeling my way with all of this.

Do you have anything in writing perchkin ?

Having that piece of paper will help open doors for your Ds. It doesnt guarantee support but it helps to point people in the right direction.

There are loads of books out there and a wealth of info on here.

You dont soumd dense at all.

Good luck

I have a massive file on DS :). Lots of paperwork and assessments and advice and suggestions for school etc etc.
But no one has actually written DS has "x", other than the OT who has written that DS has a SPD.
I'm sure if I asked them to clarify and write that DS has an ASD then they probably would.

But the more I read on here I'm now wondering if I should be going via my GP and a paediatrician or something.
I have accessed all of these professionals privately (starting with EP when DS was in Nursery, and slowly adding more!).

I'm thinking about the future and the possibility that DS will need a statement. So maybe I need to go via the proper channels - whatever they are?

Ok, I cant really offer much advice but I would definitely try to get it in writing.

Are you due to see a paediatrician any time soon?

If yes then I would ask for the diagnosis in writing. If not I would go and speak to your GP and get some advise and maybe a referral to an NHS paediatrician.

You could try asking a more specific question on here about private versus NHS diagnosis.

Good luck

Thanks zzzzzzzzz. I think that is what I need to know.
DS has never seen a Paediatrician or GP (yes I know this probably sounds odd but it's just the way things have developed!).

I need to start with my GP then?

Since I have such a massive file on DS and already have professionals on board, will the route to diagnosis be easier/quicker do you think?

sigh at the thought of going through all this again with another professional.

Is there ever, under any circumstances, a disadvantage to having a diagnosis? Can it ever be a stigma or used by the child as an excuse?

Can it ever mean that your child is pigeon holed as regards treatment etc? At the moment I feel my DS is thoroughly assessed as to exactly what his particular needs are, and is reviewed regularly and in some detail. I'd hate to end up with some catch all or blanket treatment.

See, I told you I knew nothing about all of this :)

Dd3 wasnt diagnosed until she was 9 and I can definitely say things have been easier since then.

It gives everybody a clear reminder that she needs support.

The support doesnt often come without a fight sadly and many times I have had to make sure that it is tailored to her needs.

Knowing that she has Asd has been better for Dd3 too because she knows she is different but is comfy in her skin.

Good luck

I know 2 people diagnosed as adults in this country. In both instances it came after the sorts of personal crises that were

a/ Totally avoidable if they and people around them had only known
b/ The personal disasters were NOT fully recoverable after diagnosis (A year in a mental health hospital in the case of one due to a breakdown isn't time he'll ever get back).

Both of them could only embrace obtaining a basic education as adults - school had failed them. There is a massive financial and opportunity cost to this.

Noone wants that for their child if at all avoidable.

zzzzzzz :"Earlier he was at Prep school and we paid for therapy so dx wouldn't have helped particularly."
This is where we currently are with DS and I have organised and co-ordinated all the SEN help he needs. But just lately things haven't been going so well for him and I'm thinking what if I need to change schools, what if we run out of money, what if....
I'm also thinking of applying for a statement? And, if I'm honest, I'm at a stage where I need a bit (lot?) of support too. I know I'm doing all the right things for DS but it would be good to have someone confirm it .

bochead: a/ Totally avoidable if they and people around them had only known
Oh DS knows he is different and has ASD and SPD, so do all his teachers as well as a select few other people who I have chosen to tell (such as his new swimming coach). But I have felt no need to tell anyone else, nor to take DS through the diagnostic pathway of GP, Paediatrician etc.

I feel that I have reached some sort of major decision making time. And for some reason I am very reluctant to pick up that phone and call his GP :(.

Perchin Sorry to drip feed but it's as much about life as an adult as now. It's amazing the pickles people can find themselves in without support at times. the police only accept a pead issued officlal diagnosis & yours is unofficial so wouldn't be counted.

Noone wants their son spending unnecessary time in cells. Also our kids are more likely to be victims than perpetrators of violent crime. The local police can actually be a fantastic help in protecting them if they are aware. They do need official confirmation of vulnerability in certain circumstances. I've witnessed how they treat adult melt downs or perceived rudeness etc and trust me it can be like night and day.

The ex hadn't disclosed his diagnosis to anyone till he had a hospital stay a few years back. It helped him no end when he was in pain and scared that the nurses knew his rudeness wasn't intentional but simply cos he's AS iyswim. He'd turned 40 at that point. I doubt he'll need to tell anyone again for a decade or two (including employers etc).

In education for statementing etc LA's only accept the "official" and ignore all other evidence as often as they can.

He is 5 and in Y1.

Reception went really well for him. His teachers were great. They "got" him and he was very, very happy.

This year started well but by half term he had stopped eating :(. I got him back on track over half term, but when he went back he developed bladder issues (needing to go to the toilet all the time and feeling he always needed to have a wee). Both cases were symptoms of his extreme anxiety although he masked it very well at home until the food refusal started.

The communication from school this year has been shocking but I am slowly unpicking the pieces and it seems he is having regular meltdowns at school and he isn't coping. I suspect his teachers expect too much from him (sitting still and not fidgeting for example) and he is constantly told off or told to "sit still, don't do this, do that" all day. His OT sensory diet program is not being implemented. And he now tells me he is being physically removed from lessons/situations where he is getting upset. I could go on.

I have of course jumped up and down and put in a complaint in writing and things are being actioned/changed as we speak. But I have lost faith and confidence and worry that things will not change significantly for DS. (His OT, SALT and EP are wonderful however). I'm thinking ahead as to what to do next, hence my question regarding diagnosis and further help I suppose.

Yes I am at the scary stage and feeling very lonely.

Thank you bochead.
I do worry about the future for my DS and you have given good examples of where an official (paed) diagnosis is so important.

I probably should pick up that phone and speak to his GP. I'm just so reluctant to for some reason :(

If it helps any DS's Granny and his Dad have official diagnoses. Gran is primary school teacher & Dad a qualified engineer. Both married, had kids etc. I've also met the odd hospital consultant on the spectrum - proof that IF they can access a good education many can go far.

An official diagnosis is not a barrier to a good life long term, (I know many are scared that a "label" will limit their child's life chances).

polter. I have already got a prospectus for another school and have made arrangements to go and look around next term :). I also have details of a local SN school that has opened up. I have one other school to get details from too.

I have been pretty quick to act as soon as I realised there was a big problem for him. One thing I am so very cross about is that the school did not communicate any issues with DS at all and it has taken me jumping up and down and shouting to try to get things changed. I feel so guilty too that I didn't realise until he had such severe anxiety and stress that he stopped eating :(.

He had 1:1 in reception for 1 hour per week of extended work - and he loved it.

Currently, he attends a small social skills group (4 children) for 1 hour once a week. He sees a SLT in school for 1 hour once a week, and the OT for 1 hour per week. He has a 1:1 music lesson for 1 hour per week. And he is supposed to spend time 1:1 with the Senco once a week.

He is in a very small class which is what I felt he needed (and has been recommended and confirmed by all the specialists).

There are only 8 in the class. I really thought with such small numbers provision could be made for him :(.

Sorry, those should all say 1/2 hour. All his extra sessions are for 30 minutes (sometimes 45).

You sound like you are doing great for your boy zzzzz. And I haven't ruled out HE if I feel I have to either.

One to one support in class is something I have suggested in writing. And yes I suspect we will have to pay for it.

I have a meeting on Thursday, so I'll see what their response is to the whole sorry situation.