Private ASD assessment - valid?

[ScarlettChaos]

I’m currently on an NHS waiting list for an ASD assessment, I’ve been on the list for around a year and was originally told to expect a two year wait but I’m now told it’s a 4-7 year wait.

My MH and ability to cope at work have worsened considerably over the past year and I’m currently on long-term sick leave.

My Mum has offered to pay for a private assessment - she believes I am autistic as there is a lot of evidence going right back to my toddler years but she knew nothing about autism and just thought I was an ‘odd-ball’.

I’ve looked at various providers of private assessments but the choice is overwhelming and quite varied in terms of price and method of assessment. How do I choose?

I don’t want to feel as though I’m ’buying A diagnosis’ but I do want to be seen quickly. I can have an appointment next week with a provider where you fill out questionnaires and basically speak to a consultant psychiatrist for 60-90 minutes. Is this as valid as providers who do multiple appointments including ADOS? I don’t know.

Any advice?

The assessment has to meet NICE guidelines and involve a range of clinicians.
When DD had hers I filled in a prescreening thing for the clinic to see whether it was appropriate to go for assessment. Then had an hour long prescreening session remotely going through the basics this cost £50 and was refunded / included in the full cost of the clinician thought further assessment was worthwhile. Then came the 2hr Developmental History, then the questionnaires, then the ADOS at the clinic. All in it cost £2.3k and had a 6 week wait for the ADOS session and report in my hand two weeks later.
Are you sure that what you are going to do is the full assessment and not just the pre screening bits.

The reason people talk about buying a diagnosis is because so many people who go private get one. But that is only because people don't spend so much money on something that they only have a vague concern for, by the time you go private and spend £££ then it's likely you do have it.

It’s Berkeley Psychiatrists and it does seem as though it’s just the one appointment plus the questionnaires. They do a more involved assessment if you are a child or young person - presumably this is needed for schools/services to accept the diagnosis. The psychiatrists are all NHS consultants and have extensive experience in the NHS.

Pyschiatry-UK seem to follow the same format of a one hour appointment plus questionnaires and they are also commissioned by the NHS to assess people through right to choose.

But like you say NICE guidelines say the assessment should be carried out by a multi-disciplinary team.

My main purpose for wanting the assessment is for my employer to understand me better/reasonable adjustments to help me sustain employment. I would also like to understand myself better. I’m not content with just thinking ‘I’m probably autistic’, I have a need for things to be accurate.

I was almost certain that I was autistic and wanted to get a diagnosis mainly because we were about to start trying for our first baby, and I didn't want to go into parenthood without that confirmation and without fully 'knowing myself' as it were. I didn't want to languish for years on the NHS waiting list so I sought out a professional who specialised in assessing adult females. 2 questionnaires (1 by me, 1 filled out by my mother), 2 telephone assessments and 1 Zoom assessment (it was mid-covid). DX received, and the whole process took a few weeks.

I contacted my GP surgery once I had the full assessment report with diagnosis in black and white, I ended up sending a scan of it over to them and it is now in my medical record. I wasn't questioned on it and had no problem getting them to accept it.

It's been great, as I'm now pregnant with my 2nd child and finding I'm able to get specific accommodations such as a note to have while I'm staying in hospital (planned caesarean) that details how staff should communicate with me, how to care for me etc. My employer knows I am autistic but has been absolutely useless in accommodating for that. That's more down to them though, rather than my diagnosis not being on the NHS. My employer didn't ask for any 'proof' of my diagnosis either.

ADOS isn't the be and and end all, my assessment didn't involve that at all and it was mainly a conversation with the assessor about my lived experience. A much better experience than what I feel the NHS would have provided.

I thought I would just share my personal experience and hope some of it was helpful. Please do seek out a diagnosis in whatever way you feel is best, good luck! The self-knowledge is invaluable.