Hello - Autism Non-Diagnosis

Hi,

Last August I started seeing a councillor and after about 30 minutes she asked me if I'd ever considered that I may be Autistic. I'm 34 and I've been to CBT and seen quite a few councillors over the years and none of them had ever asked this. I've never had any diagnosis of anything related to my mental health, but I've been on antidepressants in the past and have definitely suffered with depression all my adult life. Although I've spoken to lots of different people, I've never felt any of the sessions really helped me understand me.

I didn't know anything about Autism when it was suggested to me last year. So I researched a lot and for once I could actually relate to the experiences of people I was reading about and watching on YouTube. I've seen people talk about self-diagnosis being important because of how hard it can be to get seen for a diagnosis. I always found this kind of uncomfortable and I thought the only way I could feel comfortable saying I'm Autistic was to get an official diagnosis. Because the NHS waiting list was so long I was very lucky that my parents said they would pay for a private psychiatrist for me to be assessed. 

I went to that assessment this week. The psychiatrist has told me that, although I do show lots of traits, he does not think I'm autistic, but he does think I may have Emotional Dysregulation Disorder also known as Borderline Personality Disorder, he didn't actually diagnose me with this either though. He also told me I'm welcome to disagree with him and come and speak to him again or seek a second opinion. I've heard of EDD/BPD before, but I don't know that much about it. I've not looked into it yet because I've been so overwhelmed and confused by the non-diagnosis. 

So I find myself in a position where someone who's qualified to diagnose me has said I'm not autistic after speaking with me for just over two hours. But my councillor who's spoken to me nearly every week for at least an hour since August disagrees with him, but in her own words, "I'm not qualified to diagnose you, so who am I to disagree?". She also says she doesn't think I've ever displayed EDD/BPD characteristics in our sessions. I'm more confused now than I was before the assessment and part of me wishes I never went.

I'm not entirely sure why I'm posting this. I just kinda feel lost again. It feels wrong for me to disagree with someone who's an expert, but it also feels like what he's saying is wrong. 

Is there anyone else with a similar experience? Should I just accept what he's said and move on? Should I get a second opinion or talk to him again?

Any help is greatly appreciated and thank you in advance to anyone who takes the time to respond. :) 

Thom

Parents
  • Hi Thom,

    I'm sorry to hear you're having to deal with all this.

    I'm not exactly sure what you're asking for or what answer you're looking for, but hmm, it sounds to me from what you've written that the problem lies with your counsellor and not the assessor. What your counsellor has done by building you up to think you have autism is really unsound professional practice. There's a reason why some people are qualified to conduct assessments and some people are not.

    I would say to you to follow the advice of the Psychologist and go back to see him for a follow-up appointment where you can discuss his findings and their implications for you going forward. 

    If you don't want to go back to see him, then you could ask for a second opinion, and to see someone else. 

    Your counsellor has acted wrongly by putting forward her own opinions ahead of the assessment, knowing how disappointed you would be if the results came back negative. After all, that's why she is your counsellor, and not your psychologist.  I can't believe how incredibly unprofessional she has been. And the result is clear: you're now confused because of her unqualified mis-diagnosis.

    I've said this a lot, because it's true. The worst thing you can do when you go for any medical assessment is to go in with your own diagnosis (or one that someone else has put in your mind). When you do this, you're sticking two fingers up at those conducting the assessment and saying you know better than they do. Which could be true, but then why bother going for an assessment if it's just to rubber stamp your own diagnosis?

    I definitely think that it is the actions of the counsellor that has lead to your confusion. If she had not put the idea so firmly into your head and you had not gone for the assessment, you wouldn't be feeling as confused as you are now. 

    Much love, and keep us updated on what you decide x

Reply
  • Hi Thom,

    I'm sorry to hear you're having to deal with all this.

    I'm not exactly sure what you're asking for or what answer you're looking for, but hmm, it sounds to me from what you've written that the problem lies with your counsellor and not the assessor. What your counsellor has done by building you up to think you have autism is really unsound professional practice. There's a reason why some people are qualified to conduct assessments and some people are not.

    I would say to you to follow the advice of the Psychologist and go back to see him for a follow-up appointment where you can discuss his findings and their implications for you going forward. 

    If you don't want to go back to see him, then you could ask for a second opinion, and to see someone else. 

    Your counsellor has acted wrongly by putting forward her own opinions ahead of the assessment, knowing how disappointed you would be if the results came back negative. After all, that's why she is your counsellor, and not your psychologist.  I can't believe how incredibly unprofessional she has been. And the result is clear: you're now confused because of her unqualified mis-diagnosis.

    I've said this a lot, because it's true. The worst thing you can do when you go for any medical assessment is to go in with your own diagnosis (or one that someone else has put in your mind). When you do this, you're sticking two fingers up at those conducting the assessment and saying you know better than they do. Which could be true, but then why bother going for an assessment if it's just to rubber stamp your own diagnosis?

    I definitely think that it is the actions of the counsellor that has lead to your confusion. If she had not put the idea so firmly into your head and you had not gone for the assessment, you wouldn't be feeling as confused as you are now. 

    Much love, and keep us updated on what you decide x

Children
  • Hi Michael, 

    Thank you for responding. I can see how you have come to your conclusion, but I respectfully disagree with most of what you've said.

    I don't think my counsellor has acted wrongly in putting forward her opinion, as it was only an opinion and not a diagnosis. Even if I'm not Autistic I've started to understand myself better through learning about Autism. She has always pointed out things that I do that may be autistic traits, but at the same time has reiterated that she isn't and can't diagnose me. I have done my own research into this and came to my own conclusion. I thought that I can see enough traits in myself and feel I have shared experiences with autistic people I've read about/watched on YouTube that I wanted an assessment for myself. 

    I do agree that going into any assessment with your own diagnosis when you're not an expert can be harmful. I didn't go into the assessment with my own diagnosis though. At times since last August I've been thinking that an assessment is pointless as I didn't think my traits were enough for a diagnosis. Then other days I'd feel like they were more than enough. I did however feel that not being diagnosed would be the worst outcome for me as so much had started to make sense since last summer and if all that was false then I'm just as lost as I was then. In the end the psychologist has agreed with one of my thought patterns, just not the one that makes things clearer to me.

    I feel my confusion is coming from the psychologist saying I do have lots of traits, but not enough that he'd give me a diagnosis. I understand that this is possible as most autistic traits are human traits. NT people can have a couple of traits and that doesn't make them Autistic. I think that some of the traits I believe I have he dismissed for reasons I don't agree with. I mostly disagree with the reasons because I don't feel I explained myself fully, or at all, in the assessment. Along with him introducing BPD into the mix as something I could be diagnosed with, without really giving any detail as to why. 

    I'm still undecided about going back to see him or not. I only got his full report on Saturday, so I'm still digesting that. I am on the waiting list to be seen with the NHS and I'm not going to take myself off of that list at this point.