Worried if assessment came to wrong conclusion.

I’ve decided to join the online community to learn more about autism and ask for advice. I knew little about autism until I saw an NHS psychologist at the end of 2019. After a couple of sessions she said that she recognised signs of autism in me and an assessment was arranged. Then lockdown happened and I had to wait until August 2020 before I finally had my assessment. 

The ADOS assessment showed ASD levels of difficulty in my scores for Communication and in Social interaction and I scored above the cut off. Although, there was no evidence of hand/finger movements/other complex mannerisms, but there was some evidence of compulsions and rituals.

The ADIR was taken by my father as my mother had passed away 3 years before the assessment. I scored above the cut off scores for reciprocal social interaction and communication, as with the previous interview. However, I did not meet the cut off for restrictive, repetitive, stereotypes behaviours, with my father only indicating some difficulties with compulsions and rituals, and circumscribed interests. The assessors said that my father does seem to have a good recollection of your childhood and was able to compare your behaviour to that of my siblings. They concluded that there was no abnormalities present before 36 months of age.

The problem is that my dad was almost 79 years of age when he did the diagnostic interview and I know from talking to him about my childhood that his memory is poor and he does not remember problems I remember having. Furthermore, as my mother was my go to parent, he was unaware of many issues that I had.

Ultimately, the assessors concluded that the picture had not been as clear as I might have hoped. The symptom overlap of Autistic Spectrum Conditions and Borderline Personality Disorder/Emotionally Unstable Personality was highlighted as they believed I might have BPD instead os ASD and that there has been research to suggest that people with BPD may have as high levels of autistic traits as people with ASC. They concluded that this is possibly where I sit. 

Having now looked into the signs of BPD/EUPD ,I see it as less of a fit for me than ASD. It makes me wonder continuously whether I am on the autism spectrum after all. I just don’t know what to do. Has anyone got any advice?

Parents
  • If you can remember having problems as a child then they should be able to use that, and not necessarily focus on what your dad had mis/remembered. Is there perhaps anyone else who knew you as a child that could help out? Your siblings perhaps, if they were older than yourself?

  • hello!  Yes, I can remember having loads of issues as a child, I’ve always found life really really difficult. My siblings are older than me and I almost asked my sister to be interviewed instead of my dad, but I worry that she is not going to remember events the same way as me. I really was a closed book as a child, who had problems with food, socialising etc. It appears from my assessment report that they had no evidence of stimming etc and that affected my assessment conclusion. My sister is 10 years older than me and I’ve tried to surreptitiously ask her by mentioning autistic traits but she also has a lot of issues as well. Ideally I’d like a reassessment but the waiting lists are so long, I don’t get along with my GP, and the team that assessed me won’t reassess me. I have agoraphobia, too, and can’t go far from home. 

  • You could also have a search through this forum, there's been a few posts where people have been discussing their (late) diagnosis where parental input was not needed 

  • I would love to be able to give you a definite yes they are, I can only speak from the experience of my youngest son’s assessment and I found it to be very thorough without being too overwhelming. There was quite a lot of pre assessment form filling and many opportunities to submit anything you feel relevant as well via the portal. I had kept diaries and made bullet points of struggles and traits which I passed on. My son had an assessment on his own but with us present (we were not allowed to answer for him) and then 2 weeks later me and my partner had a 3 hour interview. Once that was done 4 weeks later we had a feedback appointment with their findings and this was also an opportunity to ask any questions. We should get a full detailed report any day now and to include any recommendations for the school along with any reasonable adjustments required. 
    Maybe you could give them a call and have a chat? I called them a few times regarding myself and found them to be very helpful and informative. 

    I wouldn’t like to influence your decision as I think you have to go with what you feel is right and comfortable but just wanted to share what we experienced. 

    If I can help any further please let me know? 
    Also happy to let you know how the report reads once we receive it.

    Good luck 

  • Hi Take5 and BeccaLovesBreakfast and Pixiefox and Number and all. 
    Got confirmation today from my medical practice that my GP is willing to refer me for a second opinion and that the required assessment documents are there for me to pick up!!! I’m surprised at this ‘cause I don’t think my doctor likes me at all. 
    Anyway, through the nhs right to choose program, I now need to tell them which mental healthcare provider/mental healthcare team I choose and in which region of England they are. As Take5 has suggested I may put Clinical Partners if it can be assessed using zoom or something like it. 
    Now that I’ve begun the process of reassessment I have, typically, began to see where the referral could fall down and the assessment not happen. They are justifiable concerns and could happen, but I guess I’ll just have to switch myself off and go through the motions as best I can. Do you think Clinical Partners are a good assessor to put down???

  • We used Clinical Partners. Like I said the experience with my son’s assessment was very professional but also understanding and a kind one. I have found out my referral made it through triage today and I’m now on my 10 month wait for assessment. 
    If you need anything else or want to know about the process I’m happy to help. I can only give information based on my son’s assessment as I obviously haven’t experienced this myself yet. 

    Take care

  • Thank you for all this information, it is much appreciated. If you could share the provider info with me that would be great. There is such a difference national between nhs areas and the amount of positive/negative results. 

  • I feel unable to go to see my gp to start the process knowing that he’s likely to upset me

    Maybe changing  your Gp might be an option? 

  • Hey Jonathan 

    I feel sad that you didn’t receive what you thought fitted you when you were assessed. I’m told by my son’s therapist that you can appeal a decision and you can submit additional information that you might think would strengthen your case. I guess that might be an option? Failing that like you stated you could use your right to choose. We have had a good experience with that process and my son got his diagnosis just over a week ago, furthermore it was all done via Zoom which may be good for you as you won’t need to venture out. We did all the pre assessment questionnaires which was quite a lot but without time pressure then my son had his assessment. Following that we had an interview and then 4 weeks later we had a feedback appointment with confirmation. Just waiting for the report now which we should have this week. 
    I am now waiting for my assessment with the same providers and as you have mentioned I am very apprehensive as I have internalised everything since a very young age but my goodness life has been tough going. 

    Hope I have perhaps given you some options to explore. 

    I am happy to share the provider for the assessment if you like? 

  • I'm afraid I can't help much with the Right to Choose as it's not something available in Scotland so I didn't use it. I went through the mental health team at my GP surgery and said I wanted to be referred for diagnosis as I felt it could be an explanation for why I had suffered with depression/anxiety for my whole adult life.

  • Yes, I feel the same way about the need for a “rubber stamp” as I struggle with accepting anything as valid ( including myself) without firm evidence, and even then I rarely have solid views about anything due to the amount of data there is in the world. I too beat myself up and I feel beaten up by the NHS, leaving me scared of my doctor and easily manipulated from getting what I feel I need. This is why the whole nhs “right to choose” scares me; I feel unable to go to see my gp to start the process knowing that he’s likely to upset me, and I don’t see any other way of starting the process. Do you think I should send my surgery an email saying that I want to utilise “right to choose” and that I need their help to choose what areas of the nhs can help me with a reassessment? 
    I get afraid of rejection replies or anything I feel is dismissive. 

Reply
  • Yes, I feel the same way about the need for a “rubber stamp” as I struggle with accepting anything as valid ( including myself) without firm evidence, and even then I rarely have solid views about anything due to the amount of data there is in the world. I too beat myself up and I feel beaten up by the NHS, leaving me scared of my doctor and easily manipulated from getting what I feel I need. This is why the whole nhs “right to choose” scares me; I feel unable to go to see my gp to start the process knowing that he’s likely to upset me, and I don’t see any other way of starting the process. Do you think I should send my surgery an email saying that I want to utilise “right to choose” and that I need their help to choose what areas of the nhs can help me with a reassessment? 
    I get afraid of rejection replies or anything I feel is dismissive. 

Children
  • I would love to be able to give you a definite yes they are, I can only speak from the experience of my youngest son’s assessment and I found it to be very thorough without being too overwhelming. There was quite a lot of pre assessment form filling and many opportunities to submit anything you feel relevant as well via the portal. I had kept diaries and made bullet points of struggles and traits which I passed on. My son had an assessment on his own but with us present (we were not allowed to answer for him) and then 2 weeks later me and my partner had a 3 hour interview. Once that was done 4 weeks later we had a feedback appointment with their findings and this was also an opportunity to ask any questions. We should get a full detailed report any day now and to include any recommendations for the school along with any reasonable adjustments required. 
    Maybe you could give them a call and have a chat? I called them a few times regarding myself and found them to be very helpful and informative. 

    I wouldn’t like to influence your decision as I think you have to go with what you feel is right and comfortable but just wanted to share what we experienced. 

    If I can help any further please let me know? 
    Also happy to let you know how the report reads once we receive it.

    Good luck 

  • Hi Take5 and BeccaLovesBreakfast and Pixiefox and Number and all. 
    Got confirmation today from my medical practice that my GP is willing to refer me for a second opinion and that the required assessment documents are there for me to pick up!!! I’m surprised at this ‘cause I don’t think my doctor likes me at all. 
    Anyway, through the nhs right to choose program, I now need to tell them which mental healthcare provider/mental healthcare team I choose and in which region of England they are. As Take5 has suggested I may put Clinical Partners if it can be assessed using zoom or something like it. 
    Now that I’ve begun the process of reassessment I have, typically, began to see where the referral could fall down and the assessment not happen. They are justifiable concerns and could happen, but I guess I’ll just have to switch myself off and go through the motions as best I can. Do you think Clinical Partners are a good assessor to put down???

  • We used Clinical Partners. Like I said the experience with my son’s assessment was very professional but also understanding and a kind one. I have found out my referral made it through triage today and I’m now on my 10 month wait for assessment. 
    If you need anything else or want to know about the process I’m happy to help. I can only give information based on my son’s assessment as I obviously haven’t experienced this myself yet. 

    Take care

  • Thank you for all this information, it is much appreciated. If you could share the provider info with me that would be great. There is such a difference national between nhs areas and the amount of positive/negative results. 

  • I feel unable to go to see my gp to start the process knowing that he’s likely to upset me

    Maybe changing  your Gp might be an option? 

  • Hey Jonathan 

    I feel sad that you didn’t receive what you thought fitted you when you were assessed. I’m told by my son’s therapist that you can appeal a decision and you can submit additional information that you might think would strengthen your case. I guess that might be an option? Failing that like you stated you could use your right to choose. We have had a good experience with that process and my son got his diagnosis just over a week ago, furthermore it was all done via Zoom which may be good for you as you won’t need to venture out. We did all the pre assessment questionnaires which was quite a lot but without time pressure then my son had his assessment. Following that we had an interview and then 4 weeks later we had a feedback appointment with confirmation. Just waiting for the report now which we should have this week. 
    I am now waiting for my assessment with the same providers and as you have mentioned I am very apprehensive as I have internalised everything since a very young age but my goodness life has been tough going. 

    Hope I have perhaps given you some options to explore. 

    I am happy to share the provider for the assessment if you like? 

  • I'm afraid I can't help much with the Right to Choose as it's not something available in Scotland so I didn't use it. I went through the mental health team at my GP surgery and said I wanted to be referred for diagnosis as I felt it could be an explanation for why I had suffered with depression/anxiety for my whole adult life.