Refused diagnosis

[Autistamatic]

@Pringles
Progress report. I posted a plea for assistance on Twitter last night along with a screen grab of your story from your OP. It's been retweeted a few times, several shocked comments and a few people have got in touch privately.

Everyone advises a strong, accurate letter of complaint, which we knew anyway, but it seems that many people have succeeded through that alone. The good/bad news in that this is a persistent problem in Bristol, particularly for women. There is even a Facebook support group specially for women who have been treated the same way as you by BASS (Bristol Autism Spectrum Services). I can point you to that if it's any use/interest to you.

FWIW I'd be happy to help you with your letter/complaint if you want it. Obviously I can't say for sure whether you'd get a diagnosis or not, but the fact you're being prevented from even going through the process by such blinkered ideas, fair boils.my blood.

 

[VAW]

Hi everyone,

For context, I'm a 31 year old woman.

I posted a few weeks ago about my upcoming pre-diagnosis screening on the NHS and my worst fear has now been realised... I met with two clinicians (I can't remember exactly what they said their jobs were), answered questions for 45 minutes and they decided it's very unlikely I have autism so sent me off with no further help.

I'm really angry about it as I think they were patronising and completely ignored what I was saying, claiming that I used humour, responded to their questions and described my partner in a nuanced way, therefore couldn't be autistic. I had written pages of information for them when my GP referred me, which then led to being invited for this pre-diagnosis assessment, so clearly my written experiences gave the impression that I could be autistic.

They stressed how rare autism is and that only one in 100 people are autistic, described autism as being "popular" right now, asked me why I needed a label, told me that everybody is masking all the time, it's just a human social trait. I found it all so inappropriate and cynical of them, like they didn't want to diagnose me to prove a point.

I am (or was) 99% sure I am autistic. I've been obsessively researching it for the last few months and, as many others describe, it explains everything whereas nothing else did over the years of self-exploration and absolute misery. I am completely at a loss now. I told them I would get a second opinion as I didn't agree, and I know I can do that, but I don't think I can handle another rejection because I'm clearly an excellent masker... They also stressed that I shouldn't go private because they'll just tell you what you want to hear and it won't be a real diagnosis.

Sorry if this is rambly. I'm just very lost and feel like any hope I had left has been shattered and I want to die.

Has anyone had a similar experience, or can anyone potentially give advice on coming to a place of self-acceptance without a formal diagnosis, but after being told by a professional that you're not autistic? I realise many people here are self-diagnosed, and I now wish I'd just left it at that because I'm ashamed and embarrassed about how the meeting went and keep obsessing about it and getting more and more angry.

Any help or suggestions for making a complaint would be welcome, too.

Thanks in advance.

I think it is rather hard to get a diagnosis, My son's Gastroenterologist told him he thought he had ASD since he had two son's with it he could spot the signs, His Neurologist told him he thought he had ASD, his PA told him he had ASD, so they referred him to a councilor who specializes in working with Autism, she was certain he had ASD but she couldn't diagnose him only children under the age of 18 so then he had to go to a Neuro -psychologist for a formal diagnosis. After spending a few hours with her and many written tests she just wasn't sure he had Asperger's or was in the autism spectrum. I was also called in for a few minutes (my son at that time was about 28) She wrote a full report on just about everything that was said in that room, and made me sound like I didn't know what i was talking about when trying to describe why i thought he had ASD. She said he had some traits but not all of them, and was very skeptical of saying he was in the autism spectrum...but in the end when we received her final diagnosis she wrote high end ASD, Avoidant personality disorder, and High Anxiety disorder.... the way she talked I really didn't think she was going to diagnose him with ASD at all. Really because he didn't rock back and forth, he didn't do the same things over and over like only play with only super hero's or one kind of thing, he didn't have outbursts, he kept his inside. Those are the things I guess she looked for, ALL the other stuff he did do , but i guess she was looking for EVERYTHING. After I told her of all the specialists who were certain he had ASD I think that may have persuaded her some??? Not really sure!

 

[Pringles]

@Pringles
Progress report. I posted a plea for assistance on Twitter last night along with a screen grab of your story from your OP. It's been retweeted a few times, several shocked comments and a few people have got in touch privately.

Everyone advises a strong, accurate letter of complaint, which we knew anyway, but it seems that many people have succeeded through that alone. The good/bad news in that this is a persistent problem in Bristol, particularly for women. There is even a Facebook support group specially for women who have been treated the same way as you by BASS (Bristol Autism Spectrum Services). I can point you to that if it's any use/interest to you.

FWIW I'd be happy to help you with your letter/complaint if you want it. Obviously I can't say for sure whether you'd get a diagnosis or not, but the fact you're being prevented from even going through the process by such blinkered ideas, fair boils.my blood.

Wow, that's interesting. I would appreciate any help with the complaint; I don't really know where to start and which avenue to go down. Could you point me towards the FB group? Thank you!

 

[Autistamatic]

Here's a couple of replies from other women who've had similar difficulties, copied in full:

"Perhaps try calling the helpline of the National Autistic Society and asking if they have advice of where to go. I got my diagnosis from a psychologist at a university. My brother's partner suspected I had AS she'd worked with people with it, so we investigated.
The local society up here in Norfolk (they're helpful with forms and the like but I wouldn't recommend them for general support) mentioned there was a study called the PAsSA trial where it was possible to get a diagnosis if you didn't have one but if you volunteered to take part. The alternative was going on a waiting list for goodness knows how long and it's possible I may have had a similar response to this had I gone that route. I'd start by asking the National Autistic Society and see if there are other options. There was also a study with the Newcastle university. I forget the exact title of the study but it was something like Autism Cohort. And I took part in it. That study is finished now I think, but I'm sure they mentioned something about another. Maybe the NAS can point you to some. You need to see someone who actually specialises Autism/Asperger's in my opinion. I was 25 when I got my diagnosis and been accused numerous times that I'm either faking having it or use it to make excuses because it does not present obviously in me, and so I was told, the majority of females are much the same. I finally had a reason for why I'd struggled so much with people over the years. Don't give up getting a diagnosis. You just need to keep digging to find the right route to getting one."

Personally I'm very wary of the NAS but they are a good source of information.

Here's another suggestion...

"Does she have any MH issues as well? I got put on an NHS psychiatric pathway because of ADHD and OCD. I'm not sure what a psychology pathway would be like but going on an alternative pathway might be a way to go if her doctor could refer her again? Different team of medics"

Here's the link to the FB group:

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If you want to work on a letter together then PM me on here so we can discuss it in more detail.