I was also terrified of not being diagnosed because of the informant thing. My mum answered no to almost all of the questions and I still got diagnosed because they take your own experience into account, and I'd explained the relationship I have with my parents. I was so glad about that

i just had the same conversation with Tower Hamlets. I do not have family here, and the family i do have (abroad) are not able to help. I asked the same 'how do people totally alone in this world get the help they deserve' i said this with tears streaming down my face. This is absolutely insane.

Love how you self advocated throughout this 💪

Oh my… I feel this so hard. I’m three days before the first appointment of my diagnostic. And this is the only place where they’re willing to even talk to me without a family member. Because I just don’t have contact with them (for good reason!). I’m very stressed that my appointment could be witch such a backward „professional“ like you had to deal with. I hope I can stand up for myself and my boyfriend and father of our child will also support me. Fingers crossed.

Thank you so much for sharing this story! It's just outrageous how dumb blind so called "professionals" can be! How could anyone ever say that to you!?! How could anyone even say such a thing to anyone!?! Especially when the person is in such a vulnerable position! People are looking for help! And these dumbs are suspicious and they won't give you the diagnosis! It's just beyond humanity! You are so brave that in spite of all the horrible difficulties and unprofessionalism, you didn't give up and stood up for yourself! I am so happy for you that you were diagnosed! I wish you a lot of understanding and acceptance in your life from other people and less of these jerks! You are wonderful! Thank you for what you do! ❤

I was also diagnosed in the last year and it’s really interesting to learn how it plays out in other countries. Definitely related to all the anxiety of possibly not getting a dx, and parents having no idea what’s true about you. Having my mum be my informant was terrifying but somehow I got through it. Thanks for sharing!

I had the frog book for my autism assessment. I literally just described what was on the pages. I hated it. I also had to do it privately as my GP said that there wasn't enough cause for the assessment to be continued, even before she had met me!! She literally had met me once for an unrelated thing, was sent a form by my school, and decided I wasn't autistic. I am so sorry that your autism assessment was so awful. I had a nice assessor but I was still really anxious so I can't imagine how you felt. Also, in my write up, I was diagnosed with "mild" autism (which doesn't exist) and she also said that I didn't fidget with any of the things on the table, but I brought my own things to fidget with instead.

Thank you for taking the time to share this. I've just started to seek out a diagnosis, and knowing that things may not go as assumed or expected is incredibly valuable. But also, WTF?!!!

I totally get why you feel so frustrated! I have a provisional diagnosis of ASD from a pain management programme I went to in Bath. They wrote to my GP to ask him to refer me for formal assessment and he refused. They then wrote another letter to him to ask again that he refer me providing more evidence but he still refused. I'm still undiagnosed to this day. Xxx

The whole nhs is like ‘pls make it make sense’ to me

Wow-eee-wow-wah! I think I will record my assessments, if I ever get to them...

Good video. Continue on your road on getting the silver play button

Sorry, I’m from Transylvania and fascinated with words and accents, I just love how you say ‘book’ 😕

Thank you for sharing your experience, i'm really sorry they treated you so poorly, but glad that you did get your diagnosis in the end

(edited for spelling 😢) I remember experiencing this with a BPD diagnosis, rather than an autism diagnosis, where the psychiatrist said to me “I do think you have BPD but I’m not sure if it would be helpful to diagnose it” and I was like “What the hell does that mean? Like if I need treatment, the nhs and private therapies say I need a diagnosis” and the psychiatrist replied “Well you wouldn’t be able to get help from our community care anyway because we don’t have the resources to treat BPD as it is too complex and time consuming.” And I remember just staring at her and then bursting into tears because I felt like anytime I’d tried to access NHS help they said you needed a diagnosis, and yet the NHS itself seems to be adverse to diagnosing people? So, essentially, blocking entire groups of people from getting help?! I know it probably might not even be done deliberately, but as a cost-saving measure- another therapist on the NHS said to me that anything the mental health teams cannot throw a short cbt course at and deal with in six weeks is regarded as too consuming of resourses. Which is not to say that CBT isn’t helpful, but that it can’t solve everything! I ended up with six weeks of trauma therapy (retraumatising as I couldn’t unpack or face a horrific event in just six weeks) and then six weeks of “self-esteem therapy.” After ten years of seeking help I’ve had to seek private therapy to undo all the damage, and I am privileged to have a family how can support me in paying for it. I cant imagine how difficult this process must be, and I empathise so much! Especially as it seems completely biased and outdated! The not-being-able-to-go-to-your-own-assessment part just makes me terrified that maybe there are parents who go these assessments and don’t want to see their child diagnosed and can easily manage that. It just fits into that awful stereotype of autism=bad and life ruining. Whilst Autism does cause a person to struggle, I do feel like the majority of struggle comes from having a different way of viewing the world and then being forced to try and fit in at every angle to the neurotypical way, or being forced to fit into the outdated stereotype of autism- based on research conducted on a small group of cis-boys!! (Apologies for the long message, I often just start typing and cannot stop when I get angry!)

You should blatantly make a complaint about this dr, this is fucked up af.

This is my nightmare about seeking out a formal diagnosis. I'm certainly not cis, or a dude and I don't have parents that I am close to or who understand me well. I'm worried I'll end up with an assessor like the one who did yours. He sounds HORRIBLE. I'm so sorry the process was belittling and you had to fight so hard for advocating for yourself.

Look after yourself too x

I've been referred to clinical partners and I'm absolutely terrified. Don't know how I'll get through it :(

Thank you so much for this video, I'm so sorry this happened to you. I got referred 3 years ago and the GP didn't even want to refer me originally until I just broke down needing answers. I've now started my assessment filling out forms and all sorts to send back and then they'll give me an appointment, mine is with the NHS. I refused to use the other partner they offered me as I was given no information on who they were, what they stand for and how they would do the assessment so I remained on the original waiting list. I did think some of the questions asked were in the forms were a little outdated and I definitely relate to feeling like the research behind it is lacking because I too am not male. I feel like for years I've been overlooked and ignored because I was doing alright in classes and don't fit a stereotype. My question is how have you been able to accept being autistic? I'm really struggling with this as I often feel like I'm hopeless and that no one wants the burden or dealing with me especially when things get really hard

Put ‘Adult’ in your title too perhaps x

Yuck! What a horror story. Make a part 3 our experience While obviously you got jacked around way beyond necessary its what happened and so at least anecdotal and on the face of it noteworthy and revealing .What motivates a clinician to withhold a diagnosis even when warranted must be exposed, to pay to be lied to is right up there in the realm of unreason.

I went to a psychiatrist who was the same, trying to bait me and my dad to say that I was late in my development, but I started speaking when I was 7 months-old and reading at 3 yrs-old. And this was a private clinic as well (not in the UK, tho), and we got out of there so pissed. Now I'm going to another professional who is doing a huge number of tests, taking her time to listen to me without implying anything, or try to bait me into having a different response. But it is so tough... why do these people work with autism, then?

I’m shocked by this

That makes me so angry and afraid for my own progress. 😢 So sorry for you that it was so stressfull for you and the people there treated you so badly... Big virtual hug!

It’s essentially this ‘bewk’ 😛

omg this is so painful

Thank you so much for speaking up

I can understand why your assessor said that you were autistic but didn’t know whether to diagnose. It wasn’t him being difficult or not wanting to. My brother was diagnosed as a child with ASD as an adult he was reassessed and the assessor said whilst he clearly did still have autism he no longer met the criteria for diagnosis. To meet the criteria you have to of shown that autism has / is significantly impacting your life in many areas

Wow I got angry for you watching that. I’ve got an NHS assessment but it has kinda got me worried slightly. Especially because they told you we don’t do aftercare. I’m nearly 40 and I only found out that I have autism 3 years ago.