Guidance for Adults for Assessment & Diagnosis through the NHS

Here is information on what to do to get assessed:

http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx (NAS also have a helpline)

Here is a shortened version of the AQ50 (a validated test by Simon Baron-Cohen et al used in ASC assessments) which GP's should use as a screening tool prior to referral:

Link to AQ10 (autism quotient screening questionnaire): http://docs.autismresearchcentre.com/tests/AQ10.pdf (complete and take to GP).

Please note, your GP cannot fob you off with comments such as "there is no support for adults" or "we have no facility to assess locally" etc. You are entitled to an out-of-area assessment if there is no local clinic.

Your right to a second opinion on the NHS.

NHS choices regarding treatment, hospital, clinician etc. Here is NHS Choose & Book.

NHS statement on referrals entitlement here and here.

Check (and leave) reviews of your clinic or hospital before you choose. You may also read and leave reviews here by selecting your place of treatment from the menu.

Here is a quote from the Department of Health:

"Patients currently have the right to choose the organisation that provides their treatment when they are referred for their first outpatient appointment with a service led by consultants, and to information to support that choice. Any choice beyond this is at the discretion of the individual primary care trust (PCT).

You may be aware that the Government has made a number of commitments relating to extending the choice of treatment and provider in the vast majority of NHS-funded services. Views on implementing these commitments were collected in the subsequent public consultation Greater choice and control. The formal responses to the consultation are being published on the Department of Health website at www.dh.gov.uk and can be found by typing ‘Greater choice and control’ in the search bar.

The NHS Standard Contract states that providers must accept referrals for any patient who chooses that provider and whom it is within their clinical competence to treat.

I would suggest that patients contact the Patient Advice and Liaison Service (PALS) at their local PCT, which can be found through the NHS Choices website at www.nhs.uk. PALS will be able to contact and investigate this issue with the chosen provider."

NHS statement on referrals entitlement: http://www.nhs.uk/chq/Pages/1094.aspx?CategoryID=68&SubCategoryID=153

and

http://www.nhs.uk/NHSEngland/AboutNHSservices/doctors/Pages/gp-referrals.aspx

NHS NICE guidelines here: http://www.nice.org.uk/CG142

Autism Strategy here:

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/151844/dh_122910.pdf.pdf

If you need to complain to the NHS about their failures, here:

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

Anyone facing trouble getting their GP to listen, contact your local councillor here:

http://www.writetothem.com/

If you do not get sufficient help from them, go to your MP here:

http://www.theyworkforyou.com/

There is also the Lords but they have no duty to reply to members of the public:

http://www.writetothem.com/lords

(Mods: please could this be made into a sticky?)

Parents

Former Member over 9 years ago

I'm currently in the process of getting a diagnosis sorted out but I've found it to be extremely stressful so far: not because anybody has been difficult, unhelpful or at all unpleasant, far from it, but there are so many steps and none of them seem to have been planned with autistic people in mind, rather ironically: all have often vaguely defined and ambiguously explained requirements, most need to have the ability to use the phone, travel and function socially, and so on. Even when I have asked for clarification about certain questions, the answers are pretty much along the lines of "write what you feel". But I need guidelines! Fortunately by the age of 48 I've finally started to figure out maybe possibly sorta kinda what they might want me to say but I do feel like I'm fumbling about in the dark.
So far I've seen my GP, done the questionnaire, seen my GP again, been referred to the local autism support group, filled in more questionnaires, been sent to a specialist counsellor for review, been referred back to the local autism group, been referred to the local (and historically unhelpful) psychiatric hospital where I've been sent more questionnaires which I've now returned and I'm now apparently in the queue to see a doctor. At some point. About something. Apparently the appointment may be long: "bring food". Having been a guest of the hospital in the past, they actually do very good food, but with the caveat "if you can get it". So I'll bring my own concoction.
I'm not even sure what the diagnosis will be, to be honest. I've "scored" (is that the right word? It seems inappropriate given the context) very highly on both the informal Aspie Quiz as well as RAADS-R; my education history is mixed, and I'd say overall I'm an underachiever compared to what I know my potential to be; I hold a driving licence (which is apparently relevant) although my driving is, ahem, "fraught" and I suspect along with most other road users and potential passengers I prefer not to drive; I have worked but suffered very badly with stress, especially when commuting, and can no longer work as a result of the knock-on health effects; and have got to know the local police rather well after a series of rather messy meltdowns.

So with that in mind I imagine I'll be prescribed an aspirin and told to lie down for half an hour (IIRC, that was Spike Milligan's recollection of the Army medics' answer to everything that could possibly ail you).

Reply

Former Member over 9 years ago

I'm currently in the process of getting a diagnosis sorted out but I've found it to be extremely stressful so far: not because anybody has been difficult, unhelpful or at all unpleasant, far from it, but there are so many steps and none of them seem to have been planned with autistic people in mind, rather ironically: all have often vaguely defined and ambiguously explained requirements, most need to have the ability to use the phone, travel and function socially, and so on. Even when I have asked for clarification about certain questions, the answers are pretty much along the lines of "write what you feel". But I need guidelines! Fortunately by the age of 48 I've finally started to figure out maybe possibly sorta kinda what they might want me to say but I do feel like I'm fumbling about in the dark.
So far I've seen my GP, done the questionnaire, seen my GP again, been referred to the local autism support group, filled in more questionnaires, been sent to a specialist counsellor for review, been referred back to the local autism group, been referred to the local (and historically unhelpful) psychiatric hospital where I've been sent more questionnaires which I've now returned and I'm now apparently in the queue to see a doctor. At some point. About something. Apparently the appointment may be long: "bring food". Having been a guest of the hospital in the past, they actually do very good food, but with the caveat "if you can get it". So I'll bring my own concoction.
I'm not even sure what the diagnosis will be, to be honest. I've "scored" (is that the right word? It seems inappropriate given the context) very highly on both the informal Aspie Quiz as well as RAADS-R; my education history is mixed, and I'd say overall I'm an underachiever compared to what I know my potential to be; I hold a driving licence (which is apparently relevant) although my driving is, ahem, "fraught" and I suspect along with most other road users and potential passengers I prefer not to drive; I have worked but suffered very badly with stress, especially when commuting, and can no longer work as a result of the knock-on health effects; and have got to know the local police rather well after a series of rather messy meltdowns.

So with that in mind I imagine I'll be prescribed an aspirin and told to lie down for half an hour (IIRC, that was Spike Milligan's recollection of the Army medics' answer to everything that could possibly ail you).

Children

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