Distressing assessment and diagnosis

I received a negative ASD diagnosis this week and it’s left me feeling very upset and confused. It’s not just that I disagree with the diagnosis (as do my family and long term partner) but the way I was treated has left me feeling very distressed. I spoke with a GP and was referred for assessment in Jan 2020. This was after I started reading numerous articles and watching videos by women with a late diagnosis - it was like they were all describing my life and experiences back to me, for the first time it all clicked. 
The first assessment I had was with a doctor who I later found out is studying to be a psychiatrist, so not yet qualified. We were both wearing masks and sitting two metres apart, with the doctor looking at her screen and typing loudly for 95% of the 2 hour session. She often misunderstood what I said and I’d have to try and explain again, and when she went over previous comments I realised she had recorded details incorrectly - as if she was applying her own subjective personal experience to my life rather than trying to understand me. The interview marched on at pace and because I often lose access to information recall when I’m anxious, I found it difficult to answer the questions in the timeframe I was expected to (I mentioned this at the time) - I had provided a detailed list of difficulties I have to my GP which this doctor had a copy of and I assumed would be taken into account. I was often in tears when I was talking about very difficult times in my life (including when my mother died from a heart attack) and so I asked if I could have a tissue but was told there weren’t any in the room. I then asked if she could please get me one from somewhere. The doctor reluctantly got up from her desk and stood by the door and said she could get one from the loo if I really needed one - I had tears streaming down my face and my nose was running - she eventually left and came back with some paper towels which she handed to me without a word. I felt totally vulnerable and humiliated and wish I had just walked out but I stayed for the rest of the assessment because I thought it was my only chance to get a diagnosis. When I got home I couldn’t do anything but lie on the sofa under a blanket crying for the rest of the afternoon. I still feel upset thinking about that assessment now.
The next session was only 45mins and once again with masks and socially distanced. At least this time the assessor (an occupational therapist) was sitting looking at me and there was also a student observing (I wasn’t given any notice of this). I was asked to do what seems to be the standard childish tests - place rubber blocks on a shape printed on paper, describe what’s happening in a picture book about flying frogs, talk about a holiday, act out brushing my teeth, and creating a story from objects from a bag… All of which I did but once again I struggled with recall because I felt anxious.
The report I received this week is such a factually inaccurate record of my family and myself it would be laughable if this experience hadn’t been so distressing. There are so many inaccuracies and misquotes that I would need to go through the document line by line to point them all out. It reads as if the report was written weeks, if not months, after my assessment when there was no longer any recollection of the session and only sparse notes to base it on. Even my age, date of birth, and date of assessment are incorrect. Apparently because I sat in my chair for the entire assessment, showed no signs of echolalia or repetitive movement, but did make eye contact, display signs of empathy, creativity, and humour (I ‘laughed on at least one occasion’) I do not meet the criteria for ASD. However, the report does describe (what are to me) so many clear behavioural indicators of someone with ASD. I’m a 45 year old woman and an expert masker, I can’t stop it - it just switches on as soon as I’m with people and I start going through my scripts and memorised behaviours. I have even changed my laugh and used decades of meditation and yoga to train myself to sit still and not fidget in front of people. I can look people in the eye because I make myself do it, and every time I’m guessing how long to do it for because I don't know what each individual person expects. There was no attempt to even try to assess me beyond the most obvious and physical traits of ASD. There appears to be no awareness at all of how ASD can manifest in women. They also didn’t take into account the only person I have to provide details of my childhood is my sister who is 6 years older than me - she was a child herself so her recollection will reflect that. They didn’t ask for any information from my partner of 12 years.  
Sorry this has become very long! I haven’t been able to sleep for the last few nights and I’m posting here because I’m hoping someone has some advice as to what I do next. I don’t want that report attached to my medical file because it’s so bizarre and inaccurate. My mental health has deteriorated over the last few years to the extent I’m struggling to work and pay the bills - they did conclude that I’m suffering from anxiety, depression, and OCD and should seek help (ie. add myself to another waiting list). I had hoped a diagnosis would help me get the support I need with social and communication issues and to find employment that I can cope with but I've been left feeling vulnerable, humiliated, and dismissed.
  • I've seen on here a few people have recommended the Lorna Wing Centre. I wish with hindsight that I'd taken more time to pick where I paid to get assessed!

  • You are entitled to a 2nd opinion. I had a screening apt locally in 2019, I was so anxious that they just told me I was anxious and did not fit the criteria to be put forward for an autism assessment. Other reasons were that I did not have developmental delays as a child, and my routine was not rigid enough (They knew this before I attended the screening apt). My GP obtained out of county funding through my local clinical commissioning group in early 2020, and I had an assessment at the Lorna Wing Centre in Chigwell, Essex on 25th January this year (delayed because of covid). I got my diagnosis at the age of 57. I wish you luck in getting a 2nd opinion.

  • Thanks. But sadly mine was a private diagnosis. I’ve sold my car to pay for a negative diagnosis… Argh! 

    Waiting for the full report which better explain things better than the terrible online feedback session I had. It feels like the lead clinician formed a view within seconds of seeing me on our first zoom call and twisted everything I said to form the non-diagnosis. But I’ll have to see what the report says.

  • I'm so sorry, I know how devastating and heartbreaking this is. Be kind to yourself, your mental health is so important and the way we're often treated during assessment is so damaging. You need time to heal after this experience and then decide how you want to proceed. Is self diagnosis enough or is it very important to you to have a formal diagnosis? I know that for me, I would prefer to have a formal diagnosis, but I'm not subjecting myself to that brutal process again on the NHS. Those that know and love me believe that I'm on the spectrum and are trying to understand and provide the additional support I need. At some point in the future, if I have the funds, I might pursue a private diagnosis but I'm parking this for now. We're living in a time when we are being assessed based on outdated criteria and often by people lacking the necessary qualifications and experience to assess masking adults. I'm sure there'll be a public outcry in the hopefully not too distant future about the extent of the mistreatment of adults with ASD trying to access a diagnosis.

  • Just to update on this, I’ve been told I don’t meet the diagnostic criteria. Devastated

  • Well my concern is I worry I might’ve paid for the privilege of paying for an assessment which doesn’t recognise the more subtle masking form of autism. Like the conversation about my childhood centred on bullying and whether I coped with exams (neither of which were an issue for me, fortunately). And I feel like if I’d not sent pages of stuff in afterwards with all my innermost thoughts and concerns, there’d be no chance they’d conclude I am. And it might not be enough even when I have!

    I’ll try and remember to post on here when I finally get the answer either way!

  • that in the end she’ll be fine in life because she’s ‘pretty’

    That is just out right sexist and that one comment DEFINATELY needs a complaint.  Good God! Which century are they living in?  Moreover 'pretty' ASD kids can be super vulnerable to sexual predators later in life.

  • Trouble is, no other MH channel can help if you are autistic.  ANY therapy will be useless to you unless it is autism informed.  They are massively letting people down by not holding ASD at the heart of all other therapeutic approaches for us.

  • I’m so sorry you’re going through this, my heart really goes out to you. Unfortunately I don’t know what advice to give you because I don’t know what the best next steps are for a teenager in your position, but I’m sure someone here can help you with some ideas of what options are open to you. Though I would recommend you go back and talk with your therapist about how your parents and school counsellor have reacted and hopefully they will have some advice for you too. Perhaps your therapist could talk with your parents about this too and help them to understand why you need an assessment x 

  • I feel the same way - that a diagnosis will help to make sense of my life and why I struggle with things that other people sail through. I hope you get the diagnosis you’re seeking but don’t give up hope if it comes back negative. I posted about my experience on Sunday and I’ve learnt so much more about the challenges trying to get a diagnosis since then - it seems like for most adults (especially those holding down jobs and in relationships - no matter how successful either might be) it’s a journey to diagnosis and a matter of finding an assessment centre/professional that can look through all the masking and not focus purely on how you present on the day. 

    And thank you for the advice about the complaint - I’ll be taking a factual and to the point approach instead of saying what I really think about the experience… (though that would be so much more satisfying!)

  • Thank you, your support means a lot to me. I’m so grateful to have found a community with such kind and generous people x 

  • This is my biggest fear. I know I’m autistic. I’ve taken a million tests online, interacted with many autistic people online who I relate to, I have a binder of all my autistic traits, I watch shows and listen to podcasts, etc. but Im very sure I have ADHD too. The comorbidity rate is very high. I’ve done the same thing with ADHD. I knew my parents wouldn’t give me being autistic any thought so brought up ADHD to them. They were hesitant but I talked with my therapist and she told me to speak to my school counselor, which after doing I was brushed off. It hurt so much. All because my grades weren’t that bad and when I “apply myself” I do good. Yes! Because I’m not stupid!!! I CAN’T FOCUS YOU IDIOTS!!! Sorry lol. My dad got upset at me because I don’t try hard enough in school and told me “You don’t have ADHD, you don’t have a learning disability. You just need to actually put in work.” And it hurt so bad. I know what I have to go through. And I know that I have to wait till I’m 18 to seek the diagnosis I want. I just want confirmation. I seek for that confirmation. 

  • If it’s any consolation to you on this, I recently paid to go privately and had the same toothbrushing and frog story tests. Not got my results back on it yet. But there’s a possibility I could get the same outcome as you. I really don’t know how it’ll go. I’ve held down a job and I’m married (although struggling in both for years now). Most NTs wouldn’t guess I’m autistic. But it’s been the internal struggle I know I’ve experienced since childhood which has led me to seek a diagnosis. And I’ve identified with so much on this forum since finding it. It’s like everything makes sense of my life since identifying with what lots of others say on here!

    I’ve been telling myself that if I get a “not autistic” result, I can still try and take what I’ve learnt from researching it over recent months. One of the main ones is Environment + Autism = Outcome (I might not have remembered it perfectly, but it’s something like that!). In other words, if the environment is right then we can fit in and appear fine; if it’s wrong we’ll struggle no matter how much we others think we should be able to cope. So, believe and trust yourself, even if others don’t believe you. 

    But, all this might be easier said than done. I know I’m probably going to struggle if I’m told I’m not, as thinking I’ll get a diagnosis is the only thing giving me hope for making sense of my whole life right now. So I can see it must be really tough for you having gone through what you’ve just gone through.

    With the complaint, it’s best to keep it short, polite and factual if you can. I work in complaints in another field, and that’s the best approach in 99% of cases. You can always follow up with something more detailed once later on.

  • I'm so sorry that you had to go through this awful assessment. You must have had to experience so many painful emotions all over again, only to begiven this negative diagnosis. Remember that you are worth so much more, and that this will pass. You will get through it and you will move on, it does not define you. Take care of yourself.

  • My niece had a similar comment made after an assessment, that in the end she’ll be fine in life because she’s ‘pretty’ (she has ADHD, ASD, and dyslexia). It's unprofessional and a totally subjective opinion. My report made comments about my appearance but just that I was ‘dressed casually but kempt’ - though I did have a mask on so would have been even more bizarre if she had said I was pretty! What does conforming to a physical ideal have to do with whether or not a person has ASD? Wonder if boys and men are given a similar evaluation of their physical attractiveness.

    I'm hoping I can be referred to a centre more equipped to assess me because unfortunately it will be quite some time before I'll have the funds to go private as we're still trying get back on our financial feet after the pandemic.

  • Well, I’ll just pipe up here and say that I disagree with your non diagnosis. I can tell from how you wrote your post that you are on the spectrum….!

    Anyway, that aside, you are not alone. My daughters assessment was a joke, and the report was ridiculous. Things were written that I did not say, and they mentioned things about her being likeable, and pretty….that she shrugged her shoulders, smiled etc etc… as if people with autism can’t do that??!

    I think it’s simply down to poor professionals, and a lack of funding. They see your age, and that you are married, therefore you get by well enough and cope, and don’t need a diagnosis. I think the very fact that the assessor was rude and dismissive is partly because she DID see your autism, but knows she has to fail you. Seen it all before.

    If you can fund your own assessment, it’ll be quicker. You don’t have to pay the fee in one go. There’s no point in asking your GP to refer you somewhere else, as the NHS process is exactly the same, and you’ll get the same outcome. You want to find a clinical psychologist who specialises in autism, or at the very least has it as a special interest, that is key. Many don’t follow the ridiculous regime of story telling and toothbrushing, and will look at you entirely, how you think, what deficits you may have, what qualities and strengths you have as well as everything else trait related.

  • Hi Leah, Sorry to hear that you and your child are having a tough time regarding mental health.

    You might find the mental health section of our website useful - it has links to information and advice about a range of mental health issues: https://www.autism.org.uk/advice-and-guidance/topics/mental-health  

    Best,

    SarahMod

  • Hi,
    I have also found that they believe mental health issues don't exist. I'm not autistic, however I have a teenager who is. It is becoming apparent that the 'professionals' think me a neurotic mother, and that mental health issues are not separate from the ASD diagnosis.  The local CAMHS team refuse to begin dealing with the issues my teenager with mental illness before the formal diagnosis is made of ASD. In the meantime, my child is struggling on a daily basis even so far as to have taken a massive overdose a few weeks ago... still CAMHS don't want a thing to do with it.


    It's shocking that it's this difficult to be appropriately assessed and treated - as a previous comment says, there is more than enough literature surrounding masking and diagnosis in general, that it shouldn't be this hard to get the help and support a person is entitled to!

    I've gone off on a bit of a tangent, so I apologise. However, I agree that the system is horrendously flawed. 

    Lx

  • No problem! Slight smile glad to help. 

    L xx

  • OK,  thanks for the advice x

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