Been told no diagnosis without an informant

I disagree it is a matter for health ministers and MP's, they regulate how things are done in private clinics as well as NHS ones.

However if you're doing this privately then my advice would be to go to another provider, why should you pay to be ignored? They don't seem to be taking you or I'd argue other ASC adults seriously, I suspect that quite a few of us don't have any informants and have lost documentation over years of house moves etc. It also assumes that we were given our own school reports etc to keep, I know I wasn't, my parents spirited them away never to be seen again.

Ah right. If you don’t want to go down the NHS route, you have two options: 

Contact the assessor who advised you you not to proceed. Quote the evidence of why you don’t need an informant (eg quote NICE guidelines and NAS website assessment information) and ask them to reconsider.

Or as Stuart333 and Expecto_Patronum have suggested -

pick a different autism assessor who will assess without an informant. 

Because this one is telling you that you won't get a diagnosis without an informant. Other clinics may run a different policy. My autism diagnosis was with a private clinic and I did not need an informant - they completely understood it wasn't possible in my situation. You can question this before deciding to go ahead. 

All the GP does is make a referral. I did go to GP for my ADHD diagnosis. She ran through the standard questions needed for a referral to be made. Was happy I met the criteria and put in the referral. GPs do not decide whether you should be diagnosed or not. They simply have to tick a box in order to put through the referral.

But then why be wary of one private clinic but go with another? I’ve had 2 10-mins appointments since 2019 with different GPs. I don’t think I’ve ever seen the same GP more than once. I personally think that is a more unreliable judge than the initial hour interview with a clinical psychologist. 

I'd be wary with a private clinic. It's a heck of a lot of money to spend if they're saying it's unlikely. Is there another private clinic you could use if going to GP doesn't feel like an option?

I’m doing this privately so it’s not a matter of the health minister etc. 

No with a private clinic and at the initial assessment they said there were enough markers to proceed, but now say that it is very unlikely that an assessment can do anything without an informant. As noted above, I’m in the same boat as everyone else now, I haven’t had any one-to-one GP appointments except for essentials since pre-pandemic!

I self referred. I haven’t seen a GP in person since about 2019! 

Yeah I wish I had that stuff but I don’t. I have about 10 photos from childhood and nothing else. 

Yeah I’ve only very occasionally seen any GP and although I live and work in the U.K. now I don’t have old medical records.  I don’t even think any childhood records even exist: I even just had to get my MMR redone because my childhood doctor didn’t keep records. I’ve also moved country and city a lot (it’s work related). Anyone I’d ask would be on max of 5 years knowing me through work or casual friendship. Or as you noted, I have a few relatives who are a bit older and very anti-diagnosis who, unless the assessor wants to hear the words “a load of nonsense” said repeatedly, won’t be any use. I’m not doing a GP referral because I’ve barely had access to any GP since 2019. I have about 10 photos of me as a child and no other documents as others have suggested, eg school records. 

This is an edited copy of part of the email I sent to one clinic that would not assess me without an informant. They came back to me saying they had a meeting and could now do the assessment. The NHS in my area does adult assessments without informants. A few private clinics near me offered assessments for adults without informants. 

”I do hope we can proceed with an assessment as I would be extremely disappointed if it could not go ahead. 

As I have already mentioned in my email of 00/00/00, my GP has referred me for an Adult Autism Assessment. Unfortunately the Anytown NHS Health Trust waiting time is over four years and I feel that at 00 years of age, it is too long to wait, especially since I have struggled through life feeling different as long as I can remember. 

I made contact with Autism NI and the National Autistic Society to see how to go about having a Private Adult Assessment and to see that if diagnosed as autistic, it would be accepted by my GP and other services, the same way as an NHS Adult Assessment. I was told that if a multi disciplinary team was involved in the private assessment and it followed NICE guidelines, it should be accepted by the NHS. They also said that in an ideal world a family member or somebody who had known me well should be involved, but if the person was older and might not have someone, an assessment can still go ahead.

I also made contact also with one of the team at the Anytown NHS Health Trust Referrals (where my GP had referred me originally), to confirm that if diagnosed, they would accept a private assessment. They said that age would be no barrier to an assessment and that of course not everyone has family or friends who are still alive or who they are still in contact with. Any assessment would still be completed within NICE guidelines.

I understand that being a private clinic, you may have your own policy or way of doing things, but I would feel sad if an assessment could not be offered”. 

(Assumption: you live somewhere with healthcare provided by the UK NHS.  If you are outside the UK, maybe the notes might at least give you some parallel lines to explore in your own territory).

Four observations:

1) "or use documentary evidence" - I wondered if your NHS medical records might include some references applicable to supporting your Autism diagnosis?  I have heard of people accessing their medical records in this manner.  My understanding is you should be able to access your GP records stretching back 10 years.  In an era of tending to have appointments seeing different GPs at different appointments - your medical records might help tie things together a bit more than the latest GP you happen to see.  Here is the NHS England introduction to the subject (I mention it as it can also include your NHS records with your dentist and optician - they deal with you and accommodate your presentation too):

www.england.nhs.uk/.../

2) When it comes to the whole "informant" business, I understand that the key phrase to have in mind here is:

"where possible".

as per guidelines from NICE (National Institute for Health and Care Excellence).

("We produce useful and usable guidance for the NHS and wider health and care system.  Our recommendations help practitioners and commissioners get the best care to people, fast, while ensuring value for the taxpayer").

Autism diagnosis in adults has its own NICE guideline.

National Clinical Guideline Number 142

(Often referred to as: CG142)

Autism spectrum disorder in adults: diagnosis and management
Clinical guideline
Reference number:CG142
Published: 27 June 2012
Last updated: 14 June 2021

www.nice.org.uk/.../evidence

The full guideline document is titled:

"Recognition, referral, diagnosis
and management of adults on
the autism spectrum"

In several places, including within; Summary of recommendations, the following phrase occurs:

""where possible involve a family member, partner, carer or other informant or use documentary evidence (such as school reports) of current and past behaviour and early development."

https://www.nice.org.uk/guidance/cg142/evidence/full-guideline-pdf-186587677

3) "carer or other informant" - if there is not someone who has lived with you long-term, like a life partner, is there maybe someone else - who has been involved in supporting your care in some way over a number of years - who has engaged with you on your good days and your not so good days?

4) as others have said - discuss the assessment provider's apparent pedantic "informant barrier" with your GP.

Personal Footnote:

Not all older adults have a suitable "informant" available - indeed, my personal opinion is that some of the apparently entrenched outlooks expressed by some adult Autism assessment providers feels very close to (effectively) age discrimination. 

It is not our fault we slipped through the assessment safety net until we were older adults. 

I also kick against the "informant" approach also risking denying adults their right to autonomy and confidentiality - by trying to force an adult to disclose their potential Autism status to other relatives (in the quest for identifying an "informant").

Write to your MP and Wes Streeting the health minister, and whoever is responsible if you live in a devolved region.

BBC news and Newsnight under the aegis of Your BBC do stuff on people having problems such as this and will ask on your behalf why as an adult you can't have a diagnosis.

I wouldn't have been able to be diagnosed either, I was lucky and didn't have to provide any informants.

I think this is something NAS should be agitating about too.

I also can't provide any informant. I have old photos related to my interests in my childhood, including a photo of an old tram model that I made myself. I also have school certificates and I recall well, what I've been told by my family members about myself, my untypical development etc. I don't know if it would be enough evidence for my case. Maybe you can look at clinics, where it's not required, maybe you could also collect similar evidence of how you were as a child.

That is very disappointing, especially since other clinics say that while having a person who knew you well in childhood is the preferred option, not having an informant should not be a barrier to a diagnosis. It is increasingly recognised that older adults may not have an informant.

Seahorses said:

I also don't have a friendship where I've lived with someone or overlapped with them enough that they'd be capable of doing this. I actually don't know how to proceed, other than not to proceed. Any advice?

Some suggestions:

Arm yourself with literature illustrating why you don’t need an informant. (There are books and online references specific to adults on this topic. I don’t have the details to hand, but I can search for them if you require? Just respond on this thread and I’m happy to do this)

Make an appointment with your GP and show them the referenced sources on adult assessments without an informant. Ask for a new referral. 

Choose somewhere that can assess you.  (I emailed several clinics enquiring if they did adult assessments without an informant)

If the above options are not an option, you could email the clinic that refused to assess you, asking them to reconsider. Insert the referenced sources about  not needing adult informants in the body of your email. 

Don’t give up hope, as things are changing all the time.

I second this question. If it was your GP I'd probably go ahead and then explain you don't have an informant. Plenty of people including myself get diagnosed without one. If it was the service you were referred to to get diagnosed, I'd look into raising a complaint. You shouldn't be denied a diagnosis because you don't have someone to support you. 

Who is it you had the initial consultation with, your GP?

The tests on Embrace Autism are good. They include a lot of the standard tests and there is no need to give any personal details to take them. You could start with the very short AQ-10 test or the longer AQ test.

Thanks! I am beginning to keep a little diary of the things (endless, ridiculous things) that are stressing me, which is helpful to get a picture, because when I get asked some questions I go blank or can't think of an answer, but when I pause when I am stressed and note down why, I spot things that might be relevant. It's tough having grown up in an age where everyone just decided you were a bit weird and left you to it!

Seahorses said:

I think it's possible but not absolute that it's autism

A fairly effective way to improve your certainty is to do a web search for "free online autism test" - there should be plenty to choose from (they are mostly the same test so you may decide to try a few) and at the end the test score will tell you if you are above the threshold to be considered autistic.

If you just want confirmation then this can provide it. If you want a formal diagnosis then I would suggest doing the tests, printing the results and then documenting your autistic traits.

For this last step, have a look at the long list of traits here:

https://thespectrum.org.au/autism-diagnosis/checklist-adults/

Then make a one sentence note beside each one you identify in yourself with how it presents.

Building up this comprehensive documentation should make it clear that you have done the research better than an informant could and that you are taking it very seriously so they have little reason to doubt you.

Many people also freeze up in the assessment or "mask" and try to make out that the traits don't really affect them much. This is a defence mechanism we often develop to avoid bullying or being seen as weak and the documentation will stop this from getting in the way.

More food for thought for you.