Hello,
I'm new to the community and have come here seeking advice on what to do after a bad experience with a NHS contracted private autism assessment provider... I am an adult in my 40s. I am sorry that this is so long, it's just I've tried to fill in as much detail as possible.
I received a letter to say that I was being referred to the private autism assessment provider after having been on the waitlist for about a year (and a year prior to that while I was bouncing about between GPs and closed lists). I was pleased, although nervous and checked out the company - they had really good trust pilot reviews and all seemed good.
The assessment came in two parts, ADOS and ADI both over Zoom on different days, weeks apart. The session with the assessor during the ADOS session went well and I felt comfortable and reassured.
For the ADI, both me and my mum were present and generally was ok. But the lady didn't really leave me feeling confident as she made a couple of slip ups, said things that weren't from what I had written down about myself prior to the session. I can't really remember what they were but they were incorrect when she mentioned them during the session and I corrected her. The other thing that gave me a bit of a red red flag was that I was told to prepare for a 3hour interview but the lady only took about an hour. When I questioned her about this she said that I had answered all the questions. So I left it at that and thought well they are the professionals.
Some weeks after, my feedback call was arranged. The call was with the lady from the ADI and she started the opening of our conversation with 'you are clearly autistic' and made reference to 'we have given you the autism diagnosis'. To be honest, I felt that I could have gone either way (because I am ok with some things and was not sure if my traits would be enough to make the threshold) and told her this. She then went on to talk about being able to access reasonable adjustments at work and PIP and other stuff. While this was happening I was trying to connect my airpods to the call (because I find it easier to talk on the phone this way). She was asking me if I had any questions and I was trying to ask her if she felt in her professional opinion I should follow up on ADHD traits that had been spoken about throughout the process. However, she couldn't hear me, I was trying to connect back to my phone from my airpods, but she ended the call.
She immediately called back and I immediately got to ask my question. But the moment I did everything changed she started saying that she 'would have to re-write the report' and that I would need to get a referral from the GP. She said that guidelines had changed and that ADHD needed to be assessed first to rule out traits before they can give an autism diagnosis. I felt very uncomfortable and upset because everything had changed and I didn't understand why. I didn't even know if I wanted to go for an ADHD assessment. I was saying to her that I didn't know how long that it would take and didn't want to have to go through that process and the autism process again. She said she has another person to call later, who already has an ADHD diagnosis and that they have done it the right way. She went on to talk about something called 'your right to choose' where you can request a private referral and said that I may not need to do the autism assessment again depending on how long it took, I should just call her organisation up once I'd had the ADHD assessment. I actually felt very vulnerable at the position that she was putting me in. I didn't want to be left without a clear understanding of what was going on, so I clarified with her that she was going to put in the report that they do believe me to be 'autistic but feel it necessary to rule out ADHD traits' , she confirmed yes. I felt very confused and upset but she was insistent to get off the phone.
The feedback call was meant to last 30mins, however first part of the call ('you are clearly autistic' / 'we are giving you the autism diagnosis') lasted around 7.30 minutes and the second part (my question followed by you need to get an ADHD diagnosis) 2.30 minutes, so 10 minutes altogether. I was left feeling upset and super confused.
When the report came through, it bore no resemblance to the feedback call. It said that I do not have a diagnosis of autism, although have some autistic traits. It made a one line mention of checking out difficulties that I have with organising, focus, prioritising through an ADHD assessment. I felt really sick reading the report because this is not was discussed during the feedback call.
I emailed the organisation when I read the report delivered via email. No one got back to me, after a few hours I phoned them. I got to speak with a lady who took brief notes ('the report doesn't reflect the feedback call') and said someone from the NHS team would call me back and took note of my availability.
About an hour later someone called me and I explained the situation to them. They seemed confused about the ADHD thing and said that they needed to check it with their clinical lead/ manager. It was late on Monday afternoon and I had already made them aware that I would be on holiday from Wednesday.
On Tuesday I expected some contact but there was none. Come Wednesday I needed to leave early, so sent an email saying that I hadn't heard anything but would pick up when I returned in a week (as didn't have access to receiving calls). However, later that day I received an email saying that the manager/ clinical lead had spoken with the assessment lady and that she apologies for any confusion but the assessment captured traits of autism but that I did not meet the criteria for diagnosis.
This is not what happened during the feedback and I was not given any kind of support relating to not getting a diagnosis.
This situation has really stressed me out and left me feeling vulnerable and confused. I have gone over the call in my head and why would the lady do that, it doesn't make sense... The only conclusion that seems to make sense to have clicked with me is that she mixed me up with her other client who 'already has an ADHD diagnosis' and only realised when I asked my question because that's when everything changed. So I believe she made a mistake, which has gone onto mean that I don't get the feedback support that I need and lead to upset, stress and confusion on my part because the report is totally different. I am also internally questioning the lady's competency over the assessment too especially as it was so short, a third of the time of what I was told to expect.
I have asked for a complaint to be raised and emailed them my theory about mixing me up with someone else, which they have acknowledged.
I am back from holiday now and need to pick it up, which I am struggling dealing with ( I'm really not great at this type of thing 
). How they have treated me surely can not be right? I do not understand why this happened to me 
Any help or guidance would really be appreciated 
