Published on 12, July, 2020
I have posted here before. I am 35 male.
I spoke to my doctor and they said I should do an assessment for autism and they put me forward to a clinic. I did the autism assessment form with my mum. I filled in everything and totally packed out the extras page.
The clinic I was sent to has terrible reviews on how they say you're not autistic if you're chatty etc. they denied someone instantly for pulling out their chair for their wife.
Anyway I didn't hear off them so I rang the doctors and another doctor said my application was denied because I didn't give enough information. It honestly baffles me because I packed that page out. The doctor then said after talking to me I am too sociable to have autism, which annoyed me.
My uncle has autism and has never worked due to it and has a carer but is the most sociable person. At the time I was like ok but over time I feel more wound up.
It really disappointed me. I'm tired of being told that I don't need to be diagnosed or there's no cure for autism. I don't want to be cured but when I looked into it so so much made sense for me. Now I feel like I am a liar with anxiety that's my own fault due to not having perfect diet etc.
Getting diagnosed would have been like my brain had finally been pieced together and I could have guided through life knowing this.
I am considering paying over £2000 for a private assessment but if I do that to be told I just have anxiety I will be real stressed. I work full time but saving the money would be hard.
Has anyone else had experience like this or has advice?
So true.
Honestly that sentence about getting the clearest perspective is making me tear up because that's how much it means to me.
I used to think I have the worst anxiety out of everyone I've ever met. I know that isn't true now and as everyone's anxiety is so personal I bet we all think ours is the worst. Thinking I have ASD makes me think oh yeah it isn't the severity of the anxiety it's just how my brain works in this scenario which makes it ok.
I honestly can't believe how dinosaur some professionals views are. It's scary to know you're miles ahead of some doctors in terms of understanding certain mental health areas. I have no medical academic background but just not being ignorant and treating people one by one regarding ASD puts you ahead of a big % of professionals. Why they got to make it so hard??
Sometimes I think it's because they think you're going to claim disability benefits and it's as if you're cheating the system. It's not the case and I work full time. I actually work as a debt adviser for a charity. We also help with benefits. Fun fact ... Up to 75% of PIP disability benefit applications only get accepted on the appeal of a first rejection. They don't want people claiming PIP it costs too much money so they initially deny a huge %. Depressing but true.
The doctors make you do this tick box and form for the clinic then you post it the clinic. That one form was it and I was rejected. They didn't even tell me I had to ring the doctors again myself. I get the eye contact. I am 100% aware of eye contact whether it's not looking at someone or locking on for too long trying to do normal eye contact.
Yeah I agree. I sort of am sure I have ASD. I just want the diagnosis. I feel like even though mostly my kind family members are so super nice they still think I can do normal things and I am constantly having to be super open and vulnerable about things.
For example my sister is getting married. Made up for her but she is doing a proper lads type stag do in Europe and she's going too. No problem with that but that is autistic hell for me. I never did the lads holiday stuff when younger. It's just so intense and awful I can't contemplate it. I had to send this super vulnerable message to her. She was so so nice and I'm actually going the hen do in the UK but again people just don't click that I can't do these big social things (maybe they wouldn't if I was diagnosed though?).
I actually don't think I'd have been diagnosed as a child. I think since I hit 16 and sensory overload sort of exploded I was more obvious from then on in. Now looking back I definitely had traits as a child but like I said I was too sociable to be diagnosed I think. That shouldn't be the case but I am just being realistic.
Totally! They will be really snowed under but they pushed it to one side. They should look at my medical records and see I've been searching for an answer for years. I've considered a written complaint to say how much they disappointed me.
Ok great thank you. It's good to know there's options. I will Google it now.
Just to add... There's an autistic group in my local area. The woman they have working there is autistic. She meets people for dog walks and coffee to talk about autism. Super cool idea and nice person... But surely that would make her wayyyy to social to be autistic by the doctors standards.
Hi inula,
Thank you for taking the time to reply. I definitely have imposter syndrome but I also think why am I so obsessed about proving I have ASD? If I was neruotypical I wouldn't be searching. Like I said before I actually don't mind if I have autism it's pretty cool. I just really want to be told I am. It would help me navigate life better.
Since I was 16 I have been the doctors at least 10 times for being confused about anxiety. I 100% know it's not a normal anxiety disorder. They always just offer anti depressants and beta blockers. I don't really have panic attacks it's just an unnatural obsessing over stuff. The doctors don't care they just want a quick in and out.
I have also paid for 2 psychologist's and had a NHS therapist over the years. They mainly just push what they're into onto you. Suc as tapping or CBT that does absolutely nothing. I really stuck with CBT as I despise hair cuts. It did nothing because if I am autistic that's how my brain works. I never told them I may be autistic because this is more recent realisation.
I feel your pain though. Even my dad says ... But if you are autistic there's no medicine for it. I don't care about that I enjoy that I can get deeper and more obsessive about subjects I like than a neruotypical person. It would vastly help with socialising as I burn out real hard sometimes. Most people in family and work are nice already though.
Thanks for listening it's nice to feel heard!
Really sorry to hear you were treated so shoddily. It seems like there are still some scarily outmoded notions about what an autistic person mustn't ever be seen to do to be the real deal. I hope you're doing OK, and don't give up on pursuing a formal 'diagnosis'. The private assessments are unavoidably costly, but well worth finding a way to save up for if, like me (I paid in 2022 after being told there was otherwise a 4 year wait), you need the external validation of a professional coming to a skilled conclusion and outlining it to you. Even in your feared situation (that there's not a clear cut 'you are autistic Level X'), you'll very likely still be told of significant traits and other conditions that you have that will help you get the clearest perspective on your life you've ever had. But it could well be that you do get told you're autistic, and as you deserve to know it's worth finding a way to make that happen. Best of luck...
They made you write a form? Wt--? What? My diagnostic took hours, I was still a minor, so the doctors had to speak to me and my parents. I don't know about you all, but they SPOKE to me, how I interacted in public is what they were trying to analyse. My diagnostic specifically said I have trouble making eye contact (along with other things, duh), are you telling me that this ONE written form concluded with an autism diagnostic?
You should convince YOURSELF that you are autistic. Sure, having your family say you possibly not, sucks (trust me I know, and the person who says that is a psychologist... but she is also my mom) but, what is important is that YOU know... I mean you can still get help, read books... but I understand the importance of diagnostics. I know the relief, I felt it even though I had known for years
Real question though, if not I'll make a post about it, but can an autistic diagnostic be different from when you are a teenager to an adult, do any of you redo a diagnostic?
ehh... even if they say your too sociable it could be adhd then for all they know. do they not have duty of care to investigate whether it could be something else? ...ofcourse the real reason is because they are just snowed under with referrals, so they are blanket rejecting everyone i think.
Try PsychiatryUK, it's free and recognized by the NHS. I have no idea about the current waiting times, but they are better than the NHS queue
Hi
I'm sorry you've had such a negative response to your attempts to get an assessment for your autism.
The bit about the doctor saying you're too sociable to be autistic is utterly ridiculous! I was married for 34 years (in fact my late husband enabled me to appear neurotypical as I just kind of coasted along on his coat tails!) And even though I'm now diagnosed I still get folks denying me because I can be sociable (fake and leaves me utterly exhausted)
I've realised that it's perfectly acceptable to self diagnose (as most of us do a very deep dive into the ins and outs of how autistic brains work and see ourselves reflected back) but having that official stamp of approval can be important - especially if (like me) you have imposter syndrome
I didn't go to my doctor because I thought that at my age (62) I would get laughed out of the surgery. My private assessment didn't cost anything like £2000 (and is now officially on my medical record) so be sure to look around.
Don't give up. Good luck
Inula