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Worried about autism diagnosis? (lack of)

As sweet as-pie

Well-Known Member
Hi all,
I posted here:
Vent: Psychiatrist doubting suspected diagnosis
not so long ago after seeing my psychiatrist. My ADOS is booked for tuesday, but it's becoming a huge stressor for me. Dissociation is a big problem for me, and due to the stress it's been causing me i've been dissociating pretty constantly since I last saw her. I'm very worried that I won't get the diagnosis even if I tick all the boxes, as she's told me that she doesn't think I am autistic anymore after diagnosing me with PTSD. The alternative diagnosis she's offering is social anxiety but I know that if I got treated for social anxiety it wouldn't help me as I have had issues with socialising way before I experienced anxiety in them, and I no longer do experience said anxiety but I still have the problems with understanding other people and socialising. I don't know what to do. If I don't get this diagnosis I will have to go private and pay up to £1500 which I just cannot afford. :( I've lost all faith in the mental health system and I'm pretty sure that no matter what I say or how I behave during the ADOS, they will do all they can to mark me down and be very strict with the assessment.
 
That, in truth, is why I am petrified to have my first psychiatric appointment, and worse still, in French, since I live here now, but apparently she does speak a bit of English.

Had to cancel, due to a bad cough and was, in truth, relieved, but it is still hovering in the background that I must see her.

I wonder: can you at all, seek another psychiatrist out? Because, I am being encouraged to not hint at aspergers, but concentrate on why I am there, since it is due to having chronic social anxiety.

Are you able to ask her, what her reasons are, for not diagnosing you with aspergers, despute ticking all the boxes? What about taking an advocate with you?
 
That, in truth, is why I am petrified to have my first psychiatric appointment, and worse still, in French, since I live here now, but apparently she does speak a bit of English.

Had to cancel, due to a bad cough and was, in truth, relieved, but it is still hovering in the background that I must see her.

I wonder: can you at all, seek another psychiatrist out? Because, I am being encouraged to not hint at aspergers, but concentrate on why I am there, since it is due to having chronic social anxiety.

Are you able to ask her, what her reasons are, for not diagnosing you with aspergers, despute ticking all the boxes? What about taking an advocate with you?
I am planning to discuss that at the meeting afterwards, fortunately I can still access special further education due to meeting all the critera without a formal diagnosis, and I think I will definitely seek out an advocate to get involved before I try to go private, but I just wish I didn't have to go through such a difficult process. My autism was recognised a lot sooner than most people, and yet now they're trying to take that away from me. I wish the system understood us better... there seems to be a huge normalcy bias.
 
This is why I don't have the slightest problem with someone who is self-diagnosed. But that's not much use if a diagnosis is needed to access services...
 
I've lost all faith in the mental health system and I'm pretty sure that no matter what I say or how I behave during the ADOS, they will do all they can to mark me down and be very strict with the assessment.

I don't know what it's like in other parts of the UK, but when I had my assessment last year, it was very informal. The psychologist who did mine just essentially had a really long chat with me, my husband and my mum about me from very early life, through childhood etc. He wanted to know how I'd developed, how I interacted with my peers and others around me and many other things, but I didn't feel it was a sort of strict or very formal assessment like I was expecting.

Are you taking anyone with you? Maybe that would help you to feel a bit better about it. I just wanted you to know that you could be thinking it's going to be worse than it is.
 
I don't know what it's like in other parts of the UK, but when I had my assessment last year, it was very informal. The psychologist who did mine just essentially had a really long chat with me, my husband and my mum about me from very early life, through childhood etc. He wanted to know how I'd developed, how I interacted with my peers and others around me and many other things, but I didn't feel it was a sort of strict or very formal assessment like I was expecting.

Are you taking anyone with you? Maybe that would help you to feel a bit better about it. I just wanted you to know that you could be thinking it's going to be worse than it is.

I have to go alone into the assessment, so I can't take my dad with me to back me up on anything as they have to observe my behaviour without any outside involvement. I appreciate what you're saying, but I don't think it's a case of me thinking it as my psychiatrist has attempted to cancel it multiple times and told me she doesn't think I'm autistic despite spending hours talking to my parents about my development and having 2 sessions of informal conversation with me about my experiences and thinking I was likely autistic beforehand. She's definitely biased at this point and that's my concern. I know for a fact I would've gotten my diagnosis no problem if it wasn't for me bringing up my PTSD, something I now regret. They definitely shouldn't consider it to be an alternative but unfortunately they'll use any excuse possible in order to keep diagnosis's down for some reason. :/
 
I have to go alone into the assessment, so I can't take my dad with me to back me up on anything as they have to observe my behaviour without any outside involvement. I appreciate what you're saying, but I don't think it's a case of me thinking it as my psychiatrist has attempted to cancel it multiple times and told me she doesn't think I'm autistic despite spending hours talking to my parents about my development and having 2 sessions of informal conversation with me about my experiences and thinking I was likely autistic beforehand. She's definitely biased at this point and that's my concern. I know for a fact I would've gotten my diagnosis no problem if it wasn't for me bringing up my PTSD, something I now regret. They definitely shouldn't consider it to be an alternative but unfortunately they'll use any excuse possible in order to keep diagnosis's down for some reason. :/

It seems weird to me that they don't want your Dad there with you, because when both myself and my husband had our assessments, they specified that it would help a great deal to have a parent there. I couldn't have given any information as to my very early life, so that's why I took my Mum.

Is the assessment being carried out by the psychiatrist who's doubting ASD? I have no idea why a professional in this area would actively try to stop you from having an assessment done, but maybe someone else here can answer that.

I really hope that you get the answers you are looking for, and I wish you the best for Tuesday.
 
I don't know how it is in the UK, but here (Wisconsin, USA), generalist counselors are really reluctant to give out adult ASD diagnoses. Providers with more ASD experience are better at recognizing a broader variety of autistic presentation. (The latter can still rule out that diagnosis, but are not bent on doing so.)
 
Can you ask to change psychiatrists?

I would trust my own diagnosis over anyone else's, and if they are ignoring obvious aspects it seems fair to ask for a second opinion, or change.
 
I spent the first 60 years of my life wondering why I didnt fit in. During my teen years this fed into my self-esteem which I carry to this day. Spent a fortune on psych bills and drugs in the days before AS was recognized. 2 years ago I researched and realized I have the same symptoms as millions of others. I discussed with my doctor and tho he has reservations he is treating me with meds that have helped my mind with racing.
I dont want to be "cured"; this is the only life I have known. Just yesterday I posted on FB about AS and have over 80 likes with many telling me to never change. I have never kept that a secret either
I dont care what the medical community thinks. I plan to get assistance with Cognitive Behavior Therapy as I have a tendency to drink to deal with the feeling of not fitting in, but embracing the Zen that I have AS and am welcomed in community such as this is comfort to this weary old soul.
That and seeing a holistic nutritionist to get me on the correct dietary path, including supplements.
I hope my perspective gives you spirit.

Chris
 
I have to go alone into the assessment, so I can't take my dad with me to back me up on anything as they have to observe my behaviour without any outside involvement. I appreciate what you're saying, but I don't think it's a case of me thinking it as my psychiatrist has attempted to cancel it multiple times and told me she doesn't think I'm autistic despite spending hours talking to my parents about my development and having 2 sessions of informal conversation with me about my experiences and thinking I was likely autistic beforehand. She's definitely biased at this point and that's my concern. I know for a fact I would've gotten my diagnosis no problem if it wasn't for me bringing up my PTSD, something I now regret. They definitely shouldn't consider it to be an alternative but unfortunately they'll use any excuse possible in order to keep diagnosis's down for some reason. :/

It seems to me, that your psychiatrist believes you are wanting to be autistic ie trying to fit your "symptoms" around autism.

Your age probably goes against you and being in the uk too, perhaps it is a case of: young lady doesn't want to go out to work, so attaching herself with autism.

I am understanding that the uk is really trying to cut down on the amount of money going out to disabled. Which also would explain why she doesn't want your parents there, because she feels they are trying to encourage you pushing for aspergers.

Not accusing you here, because I don't know you and thus cannot pass judgement, but what does stand out, if a young person is trying to get benefits, it will be seen in a negative light.
But, of course, this apparent professional, is doing a lousy job, as it appears she is being personally involved in denying you. Plain ridiculous to keep cancelling.

They see so many "strange" people, they probably need help from aspies lol
 
Can you ask to change psychiatrists?

I would trust my own diagnosis over anyone else's, and if they are ignoring obvious aspects it seems fair to ask for a second opinion, or change.

Yes, but self diagnosing doesn't get the appropriate help or support.

I totally agree with you, for if it where not for recognising that help on comes to those of are formally diagnosed, I would be quite happy to not get a diagnosis.
 
It seems to me, that your psychiatrist believes you are wanting to be autistic ie trying to fit your "symptoms" around autism.

Your age probably goes against you and being in the uk too, perhaps it is a case of: young lady doesn't want to go out to work, so attaching herself with autism.

I am understanding that the uk is really trying to cut down on the amount of money going out to disabled. Which also would explain why she doesn't want your parents there, because she feels they are trying to encourage you pushing for aspergers.

Not accusing you here, because I don't know you and thus cannot pass judgement, but what does stand out, if a young person is trying to get benefits, it will be seen in a negative light.
But, of course, this apparent professional, is doing a lousy job, as it appears she is being personally involved in denying you. Plain ridiculous to keep cancelling.

They see so many "strange" people, they probably need help from aspies lol

Ironically, I'm not trying to get benefits at all. I'm trying to get a diagnosis so that I can go to a specialist college, progress to university with the right support and go onto full time work so that I DON'T have to seek job seekers allowance and other benefits.
I didn't even go to the mental health services seeking a diagnosis, but the first time they met me, 2 separate psychiatrists suggested autism straight away. But now that they have an excuse not to give me the diagnosis, they're trying not to. Luckily I don't need a formal diagnosis to go to said college, but it would make my life much easier.
 
I am understanding that the uk is really trying to cut down on the amount of money going out to disabled. Which also would explain why she doesn't want your parents there, because she feels they are trying to encourage you pushing for aspergers.

This is 100% true. My husband is registered blind, and will lose money when he is switched from Disability Living Allowance to the new Personal Independence Payment. He also has to go to be reassessed...like his eyesight will have improved since he was born.

I didn't even go to the mental health services seeking a diagnosis

I had a hard time even getting a GP to refer me to the mental health team, who in Cardiff are the only people who can refer you for an assessment.
 
This is 100% true. My husband is registered blind, and will lose money when he is switched from Disability Living Allowance to the new Personal Independence Payment. He also has to go to be reassessed...like his eyesight will have improved since he was born.



I had a hard time even getting a GP to refer me to the mental health team, who in Cardiff are the only people who can refer you for an assessment.

I understand your struggle, I tried for years to get referred for other mental health issues and only got noticed after a suicide attempt. It's absolutely ridiculous the state the NHS is in.
 
I think you are utterly correct to be worried. Document your concerns and see if you cannot leverage someone else to do the diagnosis.

I went to a great deal of trouble to find someone with the right credentials to diagnose women with autism. Which is a tricky thing. And it is outright absurd that they are not getting input about your early years; that's vital.

You can tell she's going to do a lousy job. She already told you she would. Act on that fact!

Because a failed diagnosis is going to cause you trouble down the road.
 
Hi everyone! I just got back from my ADOS.
I am slightly embarrassed as I found it really hard, I couldn't complete part of it where I had to make up a story with 5 objects, I just froze for around 20 minutes and she said we could move on. I'm pretty sure I failed (or passed, depending on how you look at it), with flying colours, and I have nothing to worry about. Now I know that if I don't get my diagnosis, there's definitely something weird going on. I overestimated my ability to act neurotypical it seems. (lol) Found the whole thing extremely awkward, but at least it's over now. I find out in 3 weeks. Thanks for your messages. :)
 
If they decide not to diagnose you, try to get them to explain what makes you not autistic. By the way, is it better to try to pass as NT or to be fully AS during the test? I believe being fully AS makes it more likely you'll get a diagnosis, but it also could make you worry that you were faking it and make you feel like an impostor...
 
If they decide not to diagnose you, try to get them to explain what makes you not autistic. By the way, is it better to try to pass as NT or to be fully AS during the test? I believe being fully AS makes it more likely you'll get a diagnosis, but it also could make you worry that you were faking it and make you feel like an impostor...
I think I'd rather be able to pass slightly, I was quite disappointed in myself for some reason, but I tried my hardest throughout it and I think that showed. I was clearly frustrated several times, I think that's better for them than me just not trying to act NT or understand them at all. I honestly think that it was harder than my final exams, I'm still trying to come up with a story with those objects! :tearsofjoy:
 

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