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Help needed desperately

NAS64600

Hi I had an ASD assessment a month ago. I was previously worried about my assessment as I did not have any real "proof" from childhood as I have no family members or friends to ask. In the assessment I made it clear that I was worried as any neurodivergence has never even been brought up by doctors or schools etc due to having childhood trauma on my files. I was worried as any concern I try to raise is ignored and this is what is focused on. It seems the assessor took that idea and ran with it too. 

I have two psychology degrees (one is a msc), my husband has worked with ASD clients for the past 10 years and I have a nephew diagnosed with ASD and a son that has ADHD and is almost through his own ASD assessment so feel I am fairly right in my feelings that I have asd as does my husband feel so too. I have the lives experience and the horrible impact it has had on my life (I'm 37). However I have obviously masked a lot which has caused be a lot of mental pain. 

I received the assessment report today which said I did not meet the threshold. I was completely shocked. It has triggered major panic attacks and what I would consider to meltdowns all day. I am completely distraught and (as I often get) suicidal now.

The worst part is that whilst reading through it my husband and I found at least 10 things that were misquoted or not true at all (neither of us said them) and a lot of relevant (dsm5 criteria) information/proof missing. It also states that whilst I have a lot of traits that do meet all the criteria's, she has said they are down to childhood trauma. Even though it was barely touched on and she does not even have the facts of what it actually was (her words in the report). She also said in one part of I have a diagnosed personality disorder, which I don't have so I don't understand why she would put that. I am absolutely shattered by it and want to gie up. 

I just want to know is there anything I can do to contest it? Surely they can't just write false reports about someone and then discharge you (which is what she has done)? She has said I can set up a feedback meeting which me and my husband intend to do, but will there be any point?

I feel like reporting them for unprofessionalism due to the innacurate reporting etc. I am just lucky that I have a very supportive husband who has been helping me calm down all day. I hate to think if this happened to someone else without that support, what would happen. 

I am very desperate for advice from anyone who had similar and if they were able to get a diagnosis after this?

I also had the assessment that sees to be aimed at kids rather than adults with the reading a book, tell a story etc stuff which just didn't seem like a valid way to assess an adult who has learnt to mask.

  • I do not have any advice on your next steps but I am currently fixating on my own probable 'non-diagnosis' when I get my assessment results on Friday. 

    I had the same type of assessment as you and I think my assessor is a specialist in child and adolescents which seems odd given I am 33. She already said to my mum that she believed it just to be social anxiety, so I did follow up with a long email about the misinformation that my mum had given. However, I just feel like she had already made her mind up. 

    This diagnosis really means a lot to me, as it would really help to explain my difficulties and I do not know what to do if (when) I get that 'no'. 

    What did you do next? Were you able to contest it? I hope you managed to get some answers.

  • in reply to NAS64600

    I am so sorry you have been treated like this , i have similar issues with diagnosis because they have decided i have cptsd and anxiety and depression , in order to get any hep with the ptsd i had to prove it wasn’t my brain tumour (inactive) causing it . I now know i am in for a fight again to get a diagnosis in 4 years when i might have made it the top of the list . I am now very doubtful i will get any diagnosis . (I’m 54)

  • NAS64600 said:
    told to try not to give diagnosis.

    That sounds like the arrow twanging in the bullseye!

    They want to see if you'll give up.

  • sounds like you're doing all the right things. You are so fortunate to have such a supportive husband. Your evaluator sounds like they were just phoning it in, as they say. Let's see how they do on the back pedaling. Will you go to the meeting with the mask loosened?

    Oddly, as a 1st grader in the 50s, my being autistic was talked about in front of me,  but being "just" a girl nothing further happened. Later in the 80s, on my own and never having managed to adjust to societal exigencies, I was mis-diagnosed with "simple schizophrenia with otherwise unspecified complications" ( I may have the wording a bit off). This was apparently common (see the book Neurotribes) for girls and women seeking an ASD* diagnosis.That mis-diagnosis felt like a stigmata I didn't deserve, wrong and isolating. It affected all my attempts to form trusting bonds with others until I got the autism tests back to see there was nothing ever wrong with me from the beginning.

    So I know this feeling of impotence and being dismissed as less than deserving. There's also the feeling of lost time, all the time I might have lived more fully, more openly my own authentic self.

    --

    Masking seems to be the the main issue for you. There are therapists who are trained to get past it, peel it off for you. good hunting!

    * toss "Disorder" from the  DSM-5 with regard to autism.

  • in reply to NAS64600

    I know exactly how you feel. I have been through the same for myself and for my brother. I become obsessed with having an outcome and that causes me anxiety. Sometimes i have to let things go for now until i feel strong enough. Its almost like needing a closure, its right or its wrong. 

    I wonder if you wrote or emailes all your concerns and sent it, you would feel better. You then have a paper trail and you should get a response. Maybe then you would feel a little better. 

    Childhood trauma and ASD often go hand in hand due to the very fact that there is autism present. 

    My brother went for a private assessment at aged 60, was formally diagnosed. When i asked him, if he felt relief, he replied, you will never know how much. 

    People with autism are being failed, and we need to raise awareness of this. I hope you can start to feel better soon x

  • in reply to Tulip52

    Thank you. It is hard. I just feel like giving up. I know what you mean, that confirmation would mean so much to me too because I know it is but when you are tarred with the "trauma" brush from a young age you just get told everything about your existence is that. It's exhausting and dehumanising. It took a lot for me to ask for an assessment and I am just regretting it now as I'm so tired and fed up with it all that I don't know if my mental health can withstand any more fighting to be heard. Thank you for your advice, it really has helped x

  • in reply to NAS64600

    I think it would stress me out too. If she has offered you a follow up for feedback then that may help. I diubt she is going to like you correcting her but i would need to express my thouhts. Then if nothing changes  maybe seek a private assessment? Then report her if you are duagnosed autistic. 

    Like life isnt hard enough and then have to deal with things like this, upsets me, particularly for those that have no family support. You will kniw uf you are autistic, but for me that confirmation is very important. 

    I used to believe that all my struggles were as a result of childhood trauma, now i know different. 

    My brothers and my nedical records make reference to a petsonality disorder. Its wrong, we dont, we are autistic. X

  • in reply to Caelus

    I will have to ask my doctors but unless it was under 16, which they don't have records for, I really can't think why they would have diagnosed me with something and not told me Disappointed

  • in reply to Tulip52

    Sorry I forgot, it was NHS. It did make me wonder if they have been told to try not to give diagnosis. I could understand if I didn't have the traits but she says all the way through that I clearly do, then attributes it all to childhood trauma. Which I didn't even really say anything about. She acknowledged I have lots of sensory issues, relationship and communication issues, she didn't really listen when I mentioned some behaviours and unfortunately if I'm not prompted I don't remember to say things. I think I did mention some in a follow up email I sent but she didn't mention it in the report. I really don't know what I'd war in regards to being assessed again. I feel like it was traumatising and I don't know if I could go through it again. 

  • in reply to NAS64600

    it depends if autistic traits overlap with the other disorder they have on file.
    alot of conditions overlap... so that means if you get diagnosed with 1 disorder it usually blocks the others due to so many overlapping traits and not being able to isolate any trait from the one diagnosed to any new disorder you go for.

    thats why you need to know what this is, that is the main block to your diagnosis.

  • in reply to NAS64600

    Im suprised that she didnt ask about reoetative behaviours. 

    Would you want the same person to re assess you or have a different person assess you? 

    You didnt say if it was a private assessment? I ask this, because i wonder if some medical proffesionals (mainly NHS),  avoid giving diagnosis for autism? 

    Did she ask about your senses, smells, textures, noise, music etc?

  • in reply to Tulip52

    Hi yes I am the same. I have those too, but she didn't asky about them. And the ones I do have (which she even said she noticed in the report) she seems to say are anxiety from trauma. The whole thing seems very vague and doesn't really correlate with other things she has written in the report. And things my husband said, she completely got wrong. Would I have to start the whole process again or is there a way to contest it so that they re look at it? Thank you 

  • Was a a private assessment or xarried out by the NHS? I suffered childhood trauma, but realised recently that my repetitive behavious like stimming, rocking, involuntary grunting sounds and facial grimacing are related to autism. I have always done these things but never atributed them to autism. Im saying this to check that you didnt overlook any "behaviours" that you have that you dont realise that you have, and just put them diwn to just being you? Its just that sometimes maybe we miss things.

    I would seek a second opinion. X

  • in reply to Caelus

    But if I did as a child, which I doubt as the records she has for me docs wise won't go back that far, she shouldn't overlook the clearly autistic traits I have surely? And just discount them all. I just don't understand justification for that. I was told I have anxiety. Could it mean that? If so, the anxiety I have comes from social issues.

  • NAS64600 said:
    She also said in one part of I have a diagnosed personality disorder, which I don't have so I don't understand why she would put tha

    this is the important part.... you need to ask them about that and investigate that bit...

    have you been diagnosed as a child by your parents when you was too young to remember perhaps? you need to look into that, there maybe alot of stuff on your medical record you dont know about.