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High Functioning Autism Private Diagnosis

(17 Posts)
CyrstalStar Tue 30-Apr-13 22:17:23

Can anyone help with how the nhs go forward when you have a private diagnosis. My DS was referred
to Paed by GP and Paed put him provisionally on the waiting list for CDAC with regards to suspected ASD. We were due to see the Paed again in sept this year with a year long wait for CDAC if Paed agreed in sept that this was the right path to take still. In the meantime I had my DS seen by a clinical physcolgist privately who carried out lots of objective and comprehensive tests, observed him at home and at school plus i got another private physcolgist to do the ADOS, CARS2, past history and observation forms to see if he fits the criteria for autism. Immediately after the ADOS and all the scoring had been worked the private physchologist told me my DS had ASD, HFA. He scored highly over the cut off points for autism in all sections. Both seperate private physcolgist have confirmed DS is autistic.
NHS have agreed to put our appointment forward from sept to July. Do you think that nhs will not wish to spend the money on further testing now we already have had all the necessary tests done and just rubber stamp what we already know, give us the choice to continue or not or possibly ignore it. Either way we need the NHS diagnosis to open doors if not now def further down the line. Has anyone ever been through this order of things ?

Schmedz Tue 30-Apr-13 22:35:47

My DD was diagnosed privately as we had huge issues even trying to organise a referral through our GP.

Did discover problems when trying to use a non-NHS diagnosis for gaining support etc... So finally was referred to NHS psychologist and she was reassessed. Same diagnosis! But now we have access to support services.

NHS may not 'rubber stamp' but carry out own testing, or may choose to use results and info from your private psychologist. Ether way, it is worth going through the process IMHO.

Good luck!

bunnybb Wed 01-May-13 07:29:00

Had private diagnosis in 2012 for then 2.5 yr old dc; definitely speed up process and got all the relevant support, esp statement by 2013-

eggandcress Wed 01-May-13 08:44:50

We had our ds diagnosed privately at 2.4 years as we were told there was a one year wait to see the nhs specialist. We were able to get support and access services with our private diagnosis but we still went ahead with the nhs appointments and they did more tests and clinics and finally just photocopied our private diagnosis one year later!

CyrstalStar Wed 01-May-13 10:49:42

Thank you all for your responses, really helpful. I'm glad to hear that it is possible to get help through a private diagnosis alone in some cases however we will continue ploughing through nhs system.

StarlightMcKenzie Wed 01-May-13 12:31:09

I got a private dx but stayed in the system for the nhs one.

They wanted to discharge as they agreed with the dx but I told them that it was a second opinion I sought, and being private it came first, and that I stiil wanted the information that an extended multi-agency investigation would give us. They did it but brought the dx forward.

CyrstalStar Wed 01-May-13 20:56:07

Thanks Starlight. Maybe you can help with another thing that I'm worrying about. Both the private physcolgist's have said that my ds needs one to one help in the classroom and playground from an autistic trained teacher/person. They will address this in their reports but the school do not have to obliged it. The only way they would have to action this request is if my child was statemented but my ds will prob not get statemented( we are in herts) as he is HFA with average intelligence levels. So it's a catch 22, my ds goes without the most beneficial support because he won't have a statement and I can't get a statement. I feel I have nothing to lose in trying thinking the best I will get is an IEP. Perhaps I'm worrying to much as I haven't even told the school yet as I'm waiting for my reports. Maybe they will surprise me.

StarlightMcKenzie Wed 01-May-13 21:06:12

How old is your ds and what makes you think you can't get a statement?

Are you aware that my child is HFA with above average IQ and has a statement issued by herts?

CyrstalStar Wed 01-May-13 21:30:56

Really that's great to hear. Glad your child is being supported (hopefully).
My ds is 6 years old and in year 2. The first physchologist told me that she has seen much less able children than my ds not get their statements, second one said that it will be tough especially in herts and Paed blatantly said he won't get statemented coz he can write!! I'm going to give it a blimmen good go. You have inspired me. Thx

StarlightMcKenzie Wed 01-May-13 21:47:44

Well we left herts for its shite autism support. Sorry.

But it is possible to get a statement.

And ffs, the argument that there are worse children!? So what? If the teachers care about them then they should jolly well get the ball rolling for them too, otherwise you can assume that they don't NEED a statement to access essential help, whereas you know your ds does.

CyrstalStar Wed 01-May-13 22:04:02

True starlight
Thanks again. I'm def going for the statement.

Handywoman Thu 02-May-13 10:12:24

I am in Herts also, CrystalStar. I wonder if we are under the same CDC?! Good luck with applying for a statement (I have not been that brave yet). PM me if you like.

climber21 Sat 25-May-13 19:12:53

Hi, I am going through th same process right now with my son. He has quite bad dyspraxia but that is all the nhs has said. He has gotten off and on individual a d group therapy through the past year since reviewed, attention was an issue then but told it was not asd, or ADHD at the time, just on the one visit with a paed. A year on, and at a new school where he is now very happy, but not accessing the curriculum, we have been told the school are going to pursue getting a statement for him.

On news of this we decided to get him properly assessed as our paed has the wait and see attitude. We have gone private and it is expensive! We are still getting specialist testing done, one on sensory processing disorder, one movement, motor, and asd as well. After a lot of research, and thoughts from the paed, we are looking at spd, dyspraxia, and quite possibly hf asd. Maybe ADHD as well. I am overwhelmed, but hopeful these tests will back up the nhs Ed psych visit that is coming up in june.

Do people think the Ed psych will take the results of these tests we are getting done, or want to carry out there own?

Thanks for your help.

climber21 Sat 25-May-13 19:15:21

Also, can they take these results as is to apply for a statement? I really want one on me in place for sept, what about getting funding before the statement?

climber21 Sat 25-May-13 19:18:34

And I am in herts as well!

beautifulgirls Sun 26-May-13 21:15:12

You'll be unlikely to get a statement in place by September, but do apply now for one and use the evidence you have in your application. Check out the IPSEA website for letters and advice on how to apply. Don't be fobbed off by people who tell you that you won't get one. If you believe your child needs support that the school can not provide without a statement then you are doing the right thing in applying. You may well have to appeal along the way however so be prepared for the LA to turn down your request to assess and/or issue a statement etc.

climber21 Sun 26-May-13 23:13:54

Thanks for your advice. I am ready for a fight if need to. Do not think it is fair, if my son is not coping, that should be enough. At least I feel ready if denied, not to accept it. Fingers crossed.

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