Refused diagnosis

[Pringles]

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.

 

[Wolfnox]

If it helps. I got my official diagnosed with aspergers at a college. And if i may add its the opinions of two people. How many doctors do people who are sick have to go see before they get it right?

 

[Pringles]

At a college? Were you a student at that college? I'm not sure I understand what you mean.

And yes, I think I overestimated healthcare professionals again, God knows why. I just thought they would be more careful as I'm obviously vulnerable and was expecting a very different result.

 

[Autistamatic]

Sad to say that your story is one we hear all too often. There's far too many people making decisions on diagnosis that quite simply don't possess sufficient knowledge.

You mention NHS so I presume you're in the UK. There are official complaints procedures, details of which are linked HERE

In the event that goes nowhere your choices are to seek a private diagnosis, drop it or move to a different area with a different process and hope you see someone with more up to date knowledge. Unfortunately tha NAS still features the misleading "1 in 100" statistic on it's literature and online, despite it being years out of date. Current figures for diagnosed autistics are closer to 1 in 60 and actual figures (including undiagnosed) are estimated to be around 1 in 30.

In the meantime, you're still welcome to contribute to and learn from the autistic community here and elsewhere. There are a small number of up-themselves pillocks who reject self-diagnosed people, but you won't find them here

 

[Pringles]

Wow, I hadn't heard that 1 in 30 estimate! That's very interesting. I don't understand why they seemed so attached to that number and making sure they didn't diagnose more than 1 in 100 people! So ridiculous. Thank you for your help.

 

[Autistamatic]

What part of the country are you in @Pringles ?
There may be someone here from your area who can offer more precise advice.

 

[Pats]

All doctors need to learn to listen better. When my daughter was 2 I took her to the doctor because she was listless and her urine looked like coke. The doctor said it was probably a virus and sent her home - except I went to the emergency room where they found she was in renal failure and was temporarily put on dialysis. She would have died if I had just listened to the first doctor.

 

[Mia]

So women with autism can't be funny? Are we not allowed? Neither can we comprehend nuance?

Women with autism tend to 'fall between the cracks' within the medical community. We often learn social behavior and some cues early on and can hide many of our more obvious difficulties.

As well, there are diagnoses of schizophrenia and unipolar depression, ADHD, OCD, that are considered as it relates to females, before autism. There is a gender disparity when it comes to diagnosis of females, unless one presents with more serious and openly apparent traits and symptoms.

 

[Juliettaa]

How many doctors do people who are sick have to go see before they get it right?

Autism isn't an illness.



@Pringles - across the UK there are huge differences in NHS services and I'm really sorry to hear that you were let down.

As @Autistamatic asked, do you mind sharing where you are in the UK and if you are in a position financially to pursue a private assessment?

 

[the_tortoise]

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.

That is....strange. Surely there are such things as ethics and professional standards, whether you work as a clinician in the public or private sector?

 

[clg114]

When I got my diagnosis, I found a psychologist who specialized in autism. I needed a referral, so I got my GP to refer me to him. I went to three appointments and was diagnosed with Asperger's Syndrome. The old DSM-4 was the criteria used for my diagnosis. I have acutely talked about ASD with my GP because he was curious about it. The point of all this is that all doctors have a specialty and you need to see a doctor with the right specialty.

 

[Fino]

AHHHHHHH You got the worst kind of doctors possible!!!!!

I've talked to several just like that, and it's such an awful experience. Definitely see someone else. Don't let a couple of idiots ruin your life. I can imagine exactly how they were with you and it makes me sick! They're so massively ignorant and conceited and condescending.

I had one of those tell me "you're not depressed, you just need a girlfriend." I was too depressed at the time to answer, but there were a few problems with this:

1. I'm gay.
2. I had a boyfriend.
3. I was suicidal.

How do people like this sleep at night? They probably tell themselves they did a good job and sleep soundly. Naaaaasssty people.

 

[Autistamatic]

How do people like this sleep at night? They probably tell themselves they did a good job and sleep soundly.

Got it in one my friend. They are secure in the fallacious knowledge that they are the experts.

The comments made during @Pringles experience do worry me though, coming ,as they are, hot on the heels of the nasty and damaging "opinion" piece published in The Guardian a week or so ago. The guy who wrote it is a known agitator and bully who wishes to be a gatekeeper, determining who is and who isn't allowed to call themselves "autistic" and does everything he can to undermine any progress towards neurodiversity.

I hope "professionals" aren't listening to the likes of him.

 

[Kalinychta]

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.

Definitely get a second opinion and DEFINITELY find a behavioral analyst or psychologist who thoroughly understands autism in WOMEN. Very important. Last year, I told my neurologist (I have temporal lobe epilepsy) that I was diagnosed with autism (I’ve read that TLE increases risk of autism), and the fool sat there and told me that I’m not autistic but just have anxiety (he clearly has no understanding of the subtleties and intricacies of autism or masking and isn’t qualified to countermand a diagnosis made by the person who diagnosed me, who specializes in autism diagnoses).

So yeah, get a second opinion from someone who knows about autistic women!

 

[Wolfnox]

Autism isn't an illness.



@Pringles - across the UK there are huge differences in NHS services and I'm really sorry to hear that you were let down.

As @Autistamatic asked, do you mind sharing where you are in the UK and if you are in a position financially to pursue a private assessment?

I know. I meant that sometimes it takes more then one doctor to get it right diagnosis.

 

[Pringles]

I'm in Bristol and went to the Bristol Autism Spectrum Service so they should be specialists, right? Not in women but in autism at least. I did respond to their comments about humour etc. telling them about women commonly hiding it well and they claimed to know all about masking and camouflaging already so brushed it off.

 

[Juliettaa]

I'm in Bristol and went to the Bristol Autism Spectrum Service so they should be specialists, right? Not in women but in autism at least. I did respond to their comments about humour etc. telling them about women commonly hiding it well and they claimed to know all about masking and camouflaging already so brushed it off.

Yes, they should be specialists in ALL elements of autism, including the differences in how it presents in males/females and the often excellent abilities women have at masking, often to our detriment; but based on your post, they made a pretty swift judgement and were dismissive of some of the things you said which is not how an assessment is supposed to be.

If you're able to fund an assessment yourself and being as you're south of the UK, the Lorna Wing Centre may be an option for you. I have read lots of information to support that they have an excellent understanding of how autism presents in females.

Diagnostic services - National Autistic Society

If you're unable to fund the assessment yourself, it is possible to be referred to the Lorna Wing Centre via the NHS as well which you'd need to discuss with your GP.

The NHS does have a complaints procedure which you may wish to give consideration to. In the past, I have used the PALS service several times (non autism related) and have found PALS to be very effective in assisting to achieve the desired outcome on every occasion.

 

[Progster]

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.

Saying that autistic people can't use nuance equates to saying that they can't use humour, sarcasm, understand metaphors, appreciate poetry and literature, etc. One look around this forum demonstrates that this clearly is not the case. Also... what did they mean by 'nuanced'? Because in my experience, I'm often misinterpreted when I give a fact - for example, I might say, "my partner always forgets to take the trash out" and then other people interpret that as being a jab at him, a nuanced statement or judgement when it isn't, it's just a statement of fact. Happens to me quite a lot. People assume the presence of ememes.

And also: you're not autistic because you responded to their questions??? Do they imagine that all autistic people are non-verbal?

Sounds like those 'experts' are drawing on case studies in outdated textbooks, and not actual experience of working with autistic people. Or perhaps have limited experience with adults and females on the spectrum, haven't done research into how it presents in women, etc.

I would get a second opinion.

 

[Autistamatic]

@Pringles
Bristol eh? Bristol area or S.Glos? I happen to be not far from you and know quite a few autistic ladies from these parts on Twitter. Do you have a Twitter account?

 

[Noba Loney]

Even 1/100 doesn't sound all that "rare" to me.

So, pre-diagnosis screening? That means you haven't actually had a proper assessment and been diagnosed either way, just triaged away on what sounds like hopelessly spurious grounds.