Adult autism assessment

[Calanthoe]

I asked my GP to refer me for an adult autism assessment. I spoke to the preliminary assessor who said yes it looks like autism and I will be put on the waiting list for a full assessment in about two years time. Fine by me.

But now the mental health team have sent me two appointments. One to speak to a case worker and one for blood tests and an EEG. I spoke to them about it this morning. They said the blood tests are to establish a physical baseline in case they later prescribe medication. And the case worker will want to speak to me on a regular basis to make sure I’m ok while I’m on the waiting list.

I said I don’t have an illness that requires medication, autism isn’t an illness, I don’t want medication and I won’t consent to take it. So the physical tests are unnecessary because I will never take medication. And I’ve managed on my own for 40 years so I don’t need regular appointments with a case worker wasting my time and sticking his nose into my business while I’m on the waiting list. I literally just want to know if I have autism so I can access reasonable adjustments at work, and I find it very intrusive that they are requesting additional appointments that have nothing to do with the actual autism assessment.

So it’s looking likely that they’re going to remove me from the waiting list for autism assessment, which is really upsetting because I want to know if I have it. But mostly I’m scared that they won’t let me go and will continue to harass me, maybe get social services involved and try to force me to engage with these regular appointments. I’m scared. None of this was mentioned to me when I requested autism assessment.

That sounds awful.

That's really weird - I've never heard of this for autism assessment. It sounds like they think you have anxiety or they've mixed you up with someone who has.

Could you speak to your GP and find out exactly what they referred you for and what they existed to happen? I'd also be asking the MH team/team you were referred to for assessment exactly what their processes are.

Four years ago, when DD was referred as an adult for an NHS autism assessment, the process was :-

See GP and explain why she thought she was autistic and what benefit a diagnosis may have.

Complete a checklist form like a very simple AQ test and return it to the surgery.

Phonecall to say the referral for an NHS autism assessment would go ahead only IF DD passed an assessment by MH services, they are 'gatekeepers' for whether someone has MH issues they can treat, or if they should be given the autism assessment.

MH assessment took about an hour, lots of questions about suicide, drinking habits, depression, self-harm, OCD, behaviour issues and anxiety. I was there as her advocate (because she's autistic and has communication difficulties) and explained that anxiety can be a driver for autism as the gatekeeper was only trained in MH issues.
It sounds as though you've had a similar appointment.

After a few weeks, found she's 'passed' that hurdle and was on the pathway for an NHS autism assessment, waitlist was 2 years then, managed to get a cancellation at 18 months and a formal diagnosis.

She never had any blood tests or an EEG, nor any contact with anyone between the gatekeeper assessment to rule out MH and the actual autism assessment.

I'd definitely query why you are supposed to have all this contact and what the blood tests are for, have you been referred for ADHD where meds may be one of the things on offer?

@BlankTimes thanks for that detailed info. The process has been the same for me: Speak to GP and complete AQ test, referred to MH Services and passed a “gatekeeper” assessment, then placed on the 2 year waiting list for autism assessment. I didn’t expect to hear from them until I reached the top of the waiting list and was invited for my assessment.

These immediate requests for blood samples, EEG and meeting with a case worker for regular monitoring are unexpected, unwanted and intrusive. It’s made me scared that they intend to try to medicate me when I don’t have an illness, and they’re attempting to place me under supervision when I’m perfectly functional and don’t need or wish to be supervised. I literally just want a diagnosis for legal reasons at work.

At the initial gatekeeper assessment I asked if they would diagnose any other issues or just autism. They said just autism, your GP would have to make a separate referral if they thought you had any other MH issues. So this is solely related to the autism referral.

At this point I’m so worried about this intrusive behaviour and the threat of being put under supervision that the only course of action seems to be to withdraw my request for autism assessment and cease all contact with MH Services. I find that very upsetting because it took a lot of guts for me to begin the assessment process in the first place.

It sounds like the assessment highlighted some concerns and MH services feel you might benefit from additional support. A caseworker doesn't supervise you, it's just someone to check in with, see how you're doing and get you more immediate help if you need it.

Mental health services are very under resourced, they would not be offering support if they didn't see a good reason for it.

If you're only wanting a diagnosis, are you able to afford a private assessment?

I am absolutely not going to be “checking in” with someone. I’m an independent adult in my 40s and neither want nor need to be monitored. I just want to know if I have autism so I can request reasonable adjustments in the workplace and have legal recourse if I’m discriminated against. I can’t afford a private assessment which costs thousands of pounds, hence why I approached my GP. But if they’re going to harass me with further intervention beyond just the autism assessment then I’ll be forced to withdraw from their services completely.

No, no no no no Don't drop out, you've got this far, it's worth hanging on, honestly. I'm sure it's a mistake that cn be sorted out.

That is so strange. I think you need to contact your GP in writing and copy in the MH services who are doing this and ask them if they could explain what's going on, because it appears to be outside the standard procedure.

I've suggested contact should be in writing, firstly you've explained the situation very eloquently. Secondly you'll not get flustered like you would if it was a face to face meting or over the phone. Thirdly it creates a paper trail so they'll not be able to fob you off.

Your own words are more than adequate to do this, you've got the whole context as clear as could be in your post above,

"At the initial gatekeeper assessment I asked if they would diagnose any other issues or just autism. They said just autism, your GP would have to make a separate referral if they thought you had any other MH issues. So this is solely related to the autism referral."

and

"These immediate requests for blood samples, EEG and meeting with a case worker for regular monitoring are unexpected, unwanted and intrusive. It’s made me scared that they intend to try to medicate me when I don’t have an illness, and they’re attempting to place me under supervision when I’m perfectly functional and don’t need or wish to be supervised.
I literally just want a diagnosis for legal reasons at work." [so that I can request reasonable adjustments are made for me in order for me to do my job to the best of my ability]

Emphasise that there's no medication given for autism, it's a neurodiverse condition not an illness that can be "monitored" or "cured" and that you want an explanation of their actions because they don't appear to relate to autism at all.

My guess is someone ticked the wrong tickybox on a form and that's sparked this medical and monitoring response from them but you need to know exactly what's going on and what they are going to do to correct this.

These checks are normally done for adhd prior to the prescribing of medication.

Sounds as though the stupid sods have got muddled up. You'll need to phone and check.

I spoke to the case worker and he said it’s routine to do a physical health check for all new patients in case they prescribe meds in future. But he accepts that there’s no medication for autism so I don’t need those checks. He also said that while I’m on the extremely long waiting list he’s required to ensure I don’t deteriorate, simply as a tick-box exercise because they’d be held responsible if anything happened to me while I was waiting. But it will only be a phone call once every six months.

So I’m happy to remain on the waiting list as long as there’s no further intrusion into my life beyond a six monthly phone call. Part of this is my own paranoia about MH Services; as a child my parents would tell me to hide autistic traits because They would take me away and lock me up. And of course I’ve read news articles about people being sectioned or having their kids taken away due to MH difficulties. It’s really difficult for me to engage with them because I’m afraid they’ll interfere in my life.

I understand your concern, but they won't interfere with your life and it'll all be fine. Lots of people are being assessed for autism and adhd now 😃