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Do i pay for a private ADOS or wait a year for NHS

(26 Posts)
CyrstalStar Thu 25-Apr-13 13:50:57

Hello
I am interested in your thoughts and advice....
We are currently awaiting ADOS test through the NHS but have been told it is likely to be approx. 1 year due to long waiting list...I am considering paying for a private test it would include the ADOS module 3, CARS2-HF and ADI.

We have already seen a private clinical physcologist we has told us that she is certain our DS has an ASD but she cannot officially diagnose.

The ADOS tester above has said that he can officially diagnose. We will continue to stay on the NHS waiting list.

Should we just go with the flow and wait a year for the official dx and to be 100% certain ds has ASD or go with the private ADOS.

I just don't think that school will take us seriously without the dx and also although I have suspected for sometime my ds is autistic and the private physcologist is agreeing I just want to be sure and I gather the ADOS test will do this.

Does anyone have any thoughts on this? thank you

zumbaleena Thu 25-Apr-13 14:46:10

go with private if you can afford it...or the whole year will be crazy for you

CyrstalStar Thu 25-Apr-13 15:49:00

Thanks.. I agree. I cannot afford it, I will have to pay the money back over time. I am not bothered by this though I just want to get my DS sorted.

I also don't know who would be best to see. Does anyone know if the ADOS test is the best way to be diagnosed. My DS can get the ADOS test done as early as next Tuesday or we could wait 6 months for Daphne Keen who is supposed to be amazing. I am a little worried that ADOS's stringent criteria may not be the best way round it for my son, our private phys said that it is possible he may be high functioning and not meet the scoring.

Can anyone recommend anyone else who specialises in ASD and is able to diagnose.

thanks

PolterGoose Argentina Thu 25-Apr-13 16:13:54

How old is ds?

Support in school should be needs led not diagnosis dependent.

If money is tight I think you'd be better waiting for NHS route which will probably be based on a multi-disciplinary assessment rather than the opinion of one clinician and limited assessments. Meantime you can spend the money you've saved on resources that may help ds right now.

It is important to remember that whilst diagnosis is almost essential to ensure that eg teachers and schools take a child's needs seriously and to legitimise our own concerns as well as often being therapeutically beneficial to the child themselves as they get older and more self aware, diagnosis doesn't actually bring anything in terms of resources or support for most of us.

CyrstalStar Thu 25-Apr-13 16:31:06

Hi PolterGoose, I spoke to you before on my other post.
I think the school may be supportive once I give them our private clinical physcologists report. I guess I want the official diagnosis to be sure that my DS is autistic although I guess I already know this. My ds has had WISC and WIATT and a full comprehensive assessment. I have been told we now need the ADOS to confirm the findings. My ds is 6 years old.

Handywoman Thu 25-Apr-13 17:23:21

I've been umming and ahhing over the same question for ages, but have pretty much made up my mind, now.

dd2 is at times subtle, and, at times, not-so-subtle in her presentation of her issues. Her NHS Paed thinks she is 'probably' on the spectrum but we expect to wait just under two years for a formal assessment and she will not commit to writing her opinion down. School are therefore very much in the dark as to what's going on and are often grabbing at straws, doing the odd psychometric assessment here, and coming up with initiatives which never happen. dd2 also has hearing loss. I am going to get dd2 privately assessed. Hopefully a diagnosis will be given this way and then we will all have a 'framework' for her problems and stop guessing what the problems are all about, quit with the ???? and move forwards.

Poter is right that no interventions will naturally 'follow' from a diagnosis. However, school like to put children in 'boxes' and often need to be spoonfed in terms of how to support chilren with SEN (I have two girls with additional needs). I would like dd2 to come out of the box marked '???' (which to be frank she's been in since the age of 4... she is now 8) and finally into the box marked 'ASD'.

That's my take on it.

Handywoman Thu 25-Apr-13 17:25:08

Polter, I mean. Sorry confused

PolterGoose Argentina Thu 25-Apr-13 18:27:21

S'alright Handy I get called all sorts of things much much worse grin

I totally understand why anyone would want to pursue a private assessment but remember you are paying for an assessment, not a diagnosis! Be aware that some people spend thousands on assessments and still get no provision. Be very clear what the benefit of such an assessment would be and whether it would be seen to be legitimate by those you need it to be.

Handywoman Thu 25-Apr-13 18:45:47

I know. I totally get it, this has taken a lot of thought. For us the assessment process is crucial. We have selected someone with oodles of experience whom we have on good recommendation. Someone who will be able to tell us more about dd2 with or without dx. This is more for us than for school (about 60/40). If this assessor feels dx is appropriate, school are happy to take this on board (I have checked) with the obvious proviso that there is a limit to what can be provided in terms of support. I am under no illusions about this and have spent a LOT of energy already for my eldest (dyslexic) daughter post diagnosis. A big long report is not a panacea but we've been on this journey for four years now and it's time for an ASD-specific assessment. We are already working with a private SaLT who is brilliant.

Cailinrua Thu 25-Apr-13 18:47:56

Op, if you have not already done so, make sure to apply for DLA. This could help you with paying for your assessment. If he has greater needs than a typical child his age, he may be entitled to receive it now even without a diagnosis.

CyrstalStar Thu 25-Apr-13 21:54:52

thanks for all your comments. it seems like we are all in the same boat one way or another.

School have recoginised social difficulties but are saying they are getting better.My ds is not a problem at school he is as good as gold.Has been having a little hlp with his learning but they have been very vague about it.

The private assessments we have had to date told us that DS lacks theory of mind, abstract thinking, poor receptive language skills and does not understand emotions. Can you really not pay for a diagnosis? can a real diagnosis only be given by the NHS? i am confused. i have spoken to another phys we can do the ADOS test for my ds and he said he can officially diagnose. I would rather go to Daphne Keen as i have read good things and she must be officially diagnosing but it wont be until sept.

Our private phys we did our recent assessments is going to call our NHS Paed and tell her her findings to see if it will make any difference with waiting times as NHS have said that when a case is more clear or more information is provided a child can be fast tracked.

I think for us to have an specific ASD test and then be told that DS has ASD that would be much better than being told it without the ASD test which is where we are now. I understand that it will make no difference to school help now, thank you MN mums. It will make them listen though. I will wait and see what our Phys recommends in her report with regards to school help etc. She verbally said that DS should have an autistic trained teacher in but that will never happen not at my ds school.

Surely if i have a report from a physc and the ADOS both stating ASD then we will be understood.

i am going to look into the IEP and statement route, again thanks MN mums. I too will apply for DLA. I am guessing i will need to wait for the report first though so i can prove what i am applying for?

If anyone knows of any specialist that can diagnose ASD please let me know, we do not need any other tests done now other than one specific to ASD.

I have paid £600 t0 date plus about to spend another £500 getting the ADOS/CARS2 and ADi done....really hoping that the NHS move with us on this at our next appointment and I dont have to then go to DK in Sept and pay another £700.

Good luck everyone and thank you so much for advice I love this site it is full of real knowledge that i havent been able to find anywhere else.

CyrstalStar Thu 25-Apr-13 22:02:54

opps forgot to say also that the private assessment scored ds at 16% for verbal skills (non verbal were average). Do you think that alone would ring alarm bells? The assessments we had done were the WIATT and the WISC plus a full comprehensive test. so its pretty reliable stuff.

PolterGoose Argentina Thu 25-Apr-13 22:11:27

Sorry, I wasn't clear. What you actually pay for is an assessment. Which may or may not lead to diagnosis. Paying for private assessment does not guarantee diagnosis, and it worries me a bit that in your opening post you say The ADOS tester above has said that he can officially diagnose when that 'tester' hasn't met your child.

CyrstalStar Thu 25-Apr-13 22:31:46

ok i see what you are saying. I think I aas not clear not you...after we had the initial assessments I looked into another phys that i had looked into previously who has been mentioned on here. I told him what our assessments had produced and that the clinical pyhsc is confident that our child has an ASD but she cannot give us an offical diagnosis without an ADOS. This is what the NHS are going to use when they test our DS (NHS Paed said this) so this makes sense and i gather it is the most used test for ASD assessing. I asked him if the scores from the ADOS came back as fitting the ASD criteria is he able/qualified/in a position to be able to give us a official diagnosis. He said he was but obviosuly it would have to be only if this was actually the case. What I am trying to say is that i do not want to pay anymore money for tests and be told that my child has an ASD unless they can give me a official diagnosis not just a working one. does this makes sense or am i being overly cautious.

iAutism Thu 25-Apr-13 22:37:46

Yes indeed it is only an assessment…
ADOS Dr Bonny ..
www.meetup.com/AutismUK/about/

CyrstalStar Thu 25-Apr-13 22:40:08

also the physcologist who will do the ADOS will be seeing the report from the previous assessment. However he will be meeting my child for the first time and spending 3 hours doing the ADOS/CARS & ADI and that is it unless we wish to use him in the future for anything else.
I understand that a child should be seen more than once and time spent covering thing, observing prior to any diagnosis. This is the way i would assume the NHS would do it. My ds has been referred to a SALT via nhs which is good. The clinical phyc who we have already seen went to my ds school and observed him and we had 3 appointments with her over 2 hours long where she observed and assessed my son. I am sure that DK only has one meeting with the child, discusses issues, observes, checks out any prior reports, gets reports from school (if nec) then makes her case from that basis alone. All the MN recommend her. Do you think i am making a mistake.

iAutism Thu 25-Apr-13 22:40:12

You are entitled to the NHS diagnosis I would push for that…

CyrstalStar Thu 25-Apr-13 23:01:34

thank you iAutism that link was very interesting to watch...I will def be be pushing for NHS diagnosis maybe i should push a little harder.

I would like my ds to have the ADOS test it would be very interesting to see what the outcome would be from that. Maybe this alone is worth also paying for it privately aswell as waiting for NHS. I have read all about what the module 3 involves which is the module he would have and i know that he would struggle with some if not most of it.

iAutism Thu 25-Apr-13 23:08:37

We were in this boat. The best advice we got was not to go out and spend lots of money specially if you have none. Going private often means what you are paying for is someone to listen to you. They are only as good as the last child (Dr bonny video) and may need to do lot more observations etc and question is…will this be accepted by the NHS and schools.

Is there a local support group near you?

Rgs

iAutism Thu 25-Apr-13 23:13:53

I do have a consultant’s questionnaire used for parents. Useful as a focus point. PM and can email

Rgs
Autism Resource Centre – Early Intervention
www.meetup.com/AutismUK/

CyrstalStar Thu 25-Apr-13 23:14:19

yes you are right, very right.

i havent managed to find any support groups yet but i am looking i am sure there must be some.

this is the link to the private guy for the ADOS, etc -

http://www.flowerassociates.co.uk/#/dirk-flower/4534911300

CyrstalStar Thu 25-Apr-13 23:16:10

thanks iAutism...i need to work out how to PM you...lol...i am a newbie here

iAutism Thu 25-Apr-13 23:25:53

PM i think is called Message poster towards the right...

.....leading Chartered Psychologists in the UK, having gained his Masters and Diploma of Educational Psychology in New Zealand.

Well if you go for private you might as well go for one who is world famous and someone who thet wont argue with smile

CyrstalStar Thu 25-Apr-13 23:31:01

I found the message bit thank you...did u get it?

So you think he should be reliable then. I've read a few good things about him on here when I searched him but not with regards to diagnosis just tribunal help and report writing I think.

iAutism Thu 25-Apr-13 23:41:13

No not him...i was thinking of the world leading authority and works in the NHS.

But i would still hold off and talk things through local support groups as they know what your system is like...

Sent Email

Rgs

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