What can you do with a private diagnosis for asd?

[redhappy]

Just wondering for the future. ds is 3.5 and due to start school in sept 11. I went to visit gp last week to discuss for the first time, and already I'm sat here waiting for a response.

I really want to get diagnosis in place before he starts school, but I'm aware that for some people it has taken years. If that looks like the case for us then I will look into getting a private diagnosis.

So, my question really is- is there any point? Is there anyone who will refuse to recognise a private diagnosis? Will I be able to use it to get support for my son, or is it a bit useless in reality?

There is a caveat on one of the LEA websites stating that a private DX will not be accepted with regard to a statement as that's not fair, or some such nonsense.

It shouldn't take years - in our case it has, to be fair, but it isn't glaringly obvious and lots of other things had to be ruled out first.
Essentially, it took 3 hours - a 2 hour MDA in January, then a 1 hour ADOS in May. The waiting list was the biggest issue!

Yes, if you can afford it get a private dx. Make sure you pick someone with credibility and a reputation at stake. A NHS paed/clinical pyschologist who does private clinics is always a good one and hard for anyone to challenge, but you'll pay.

The argument that LA's can use is that you can pay anyone to say anything, but it is harder for them to say that if it is actually an NHS person making the diagnosis. It is also worth knowing that whilst the LA might say private isn't worth anything, ALL of the people who govern LA activites DO acknowlege it, i.e. Ombudsman, Tribunal etc etc. In addition, getting a private dx can push you up the NHS waiting list. They don't fob you off with endless assessment periods because there is no point, you already have the diagnosis, so they just kind of get down to it.

Do make sure that you tell the NHS that your private dx is a second opinion however, and that you still require the first one, even if it comes later.

hth

I got a private dx of ASD and I've never had the issues of the LA not accepting it that often seems to be reported. They have never disputed it at all.

I used a paed who also works for the NHS and I also had a second opinion from our local CAMHS later. As FNN says, the second opinion was fairly straightforward and they were happy to confirm the first dx without doing it all from scratch.

My private dx was done by a single paed (with input from private EP and school report). If I had to do it again, I think I would have preferred a multi-disciplinary assessment with paed, SALT, OT etc. This is what you'd usually get on the NHS (hence the waiting list). I have had to get SALT and OT reports anyway for statementing, so it would have made more sense to get it all done at the same time.

sugar, I insisted on an NHS multi-assessment though so I did have all of that. Not the OT though as they don't do OT for children with autism . I said that I wanted the detail to help identify ds' needs as well as dx. The paed was surprised but agreed thankfully.

In our case, by the time we saw CAMHS for our NHS assessment, DS had already seen a private SALT/OT for statementing so we didn't really need those on NHS. But they were done separately from the paed assessment (I didn't realise the importance of SALT/OT when I saw the paed). I would have got a much more coherent picture if I'd gone to a centre with paed/SALT/OT all linked.

my lea won't accept the private diagnosis, so we are going through the NHS procedure now. We had the private diagnosis last April (2009) and have the NHS appointments this month and June.

sugar an fnn i have no idea what your're talking about!

I know what SALT and OT means. But I don't know what sort of assessment is standard on the NHS, how is that different for multi-assessment, who is multi-assessment used for normally?

Also what is your local CAMHS and how do I go about finding mine? Is that who I'm waiting for the health visitor to refer us to?

Please assume I know nothing?!

I should say, we have a multi-disciplinary appointment now. We have seen CAMHs already who have confirmed the diagnosis without going through the whole assessment procedure again, but they haven't yet done anything with respect to a statement or organising any help for us. I hope that will come soon as we are feeling rather alone!

Sorry redhappy. I spend too much time on these boards!

The usual route to assessment on NHS seems to be a multi-assessment/multi-disciplinary assessment (MDA). Your child will be seen by SALT, paediatrician, perhaps a clinical psychologist or psychiatrist and OT. Only a paediatrician or psychiatrist can usually dx, but input from the other professionals is useful. They do structured observations and questionnaires, perhaps some standardised tests, and it can take several visits, plus observations at school/home.

CAMHS is Child and Adolescent Mental Health Services. They have clinical psychologists and psychiatrists. In some areas, ASD assessments are done by CAMHS. In others it is done at the social communication clinic, it depends on how things are run in your area. Your GP should know what the usual route is.

yes, If I were you I would go to see your GP - he may be able to refer you to CAMHS first/quicker. In our case the first appointment was just with the CAMHS psychologist - she has arranged the multi disciplinary appointment. We are seeing the SALT (speach and language therapist), Clinical Psychologist and someone who is "Associate Specialist Community Paediatrics". At separate appointment we are seeing the CAMHS doctor who is apparently a child and adolescent psychiatrist.

I suspect each NHS trust does it differently. I know you want to get this done quickly, but it does take a while I'm afraid. My ds is 11 now and we started this whole process when he was 2

Pollyanna, are you waiting for CAMHS to start the process for statementing?

Has anyone requested a statutory assessment by the local authority? You have a right to ask for one as a parent and it is usually much quicker to start the process yourself.

We went to see gp on tuesday last week. Tbh he didn't really know what to make of ds. Because he eventually looked him in the eye couldnt possibly be asd .

He agreed that he needed help with speech, and that normally picked up by health visitor so she would know who best to refer it to, and if needs to be referred for asd too. I kept talking at him until he could see that asd really was a strong possibility. He said that he would contact health visitor on my behalf and ask her to contact me for a home visit.

Hadnt heard anything by thursday so I popped in and got a phone number for her. Have just called and spoke to someone else who seemed helpful. Going in for developmental check tomorrow morning.

So....what do I need to push for? It seems really obvious to me that he needs some help/support, but if she says 'wait and see' can you tell me what she should be doing so I can ask for that to happen?

There is a special needs nursery in the afternoons at the school I want him to go to, that is by referral only, so that's why I really want to get things moving.

redhappy Ask for a referall to developmental paediatrician, and if you haven't already, a referral to Speech and Language therapist. If you get that far then also ask for an Occupational Therapist, but do them in that order and see how far you get.

we don't really need a statement at the moment sugarcandy as ds is at a private school so we aren't in a hurry for that. This would be useful though if we have to move him for any reason, so I was hoping that camhs will be able to help with this. We just need support with ds and advice really as we have felt rather stranded. I wasn't aware of the statutory process though and may resort to that if camhs etc fail us next week.