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
  • My own later in life autism diagnosis journey started in 2019 via the NHS, then Covid intervened and my assessment was carried out online via zoom, via a provider that was outsourced by the NHS on thier behalf in 2021 and the final diagnosis report was then sent to me via email - the therapist even admitted that as she was carrying out the assessment via zoom, rather than face to face, that she was not entirely sure that her assessment was entirely accurate, as the interaction of the assessment was limited to what she could see and hear via Zoom once any connection issues were sorted out in advance - aside from using possibly outdated models for diagnostic purposes in the light of latest research which the NHS seem either unable and/or unwilling to take on board, due to possibly incorrect perceptions regarding increased costs/funding issues, these facts as stated above, including given the fact that the diagnosis was outsourced to a provider outside of the NHS, further emphasise the need to have proper post-diagnosis reviews and assessments, which must be conducted face-to-face, which must become a basic legal entitlement of the person diagnosed and a basic legal requirement on the relevant providers, in this case the external provider and the NHS, on an individual “case-by-case” basis - this must be properly done to (properly) assess level and type of autism (and any other related Co-conditions) and to (properly) identify any relevant and appropriate levels and types of supports going forward, again on a “case by case” basis, not a “one size fits all” model that seems to be currently applied - and very often, this would result in significant cost savings for the NHS in the short, medium and long term, without requiring any additional funding (public funds - taxpayers money) as outsourcing NHS services to private providers is at much higher costs and higher risk of inaccurate diagnosis 

Reply
  • My own later in life autism diagnosis journey started in 2019 via the NHS, then Covid intervened and my assessment was carried out online via zoom, via a provider that was outsourced by the NHS on thier behalf in 2021 and the final diagnosis report was then sent to me via email - the therapist even admitted that as she was carrying out the assessment via zoom, rather than face to face, that she was not entirely sure that her assessment was entirely accurate, as the interaction of the assessment was limited to what she could see and hear via Zoom once any connection issues were sorted out in advance - aside from using possibly outdated models for diagnostic purposes in the light of latest research which the NHS seem either unable and/or unwilling to take on board, due to possibly incorrect perceptions regarding increased costs/funding issues, these facts as stated above, including given the fact that the diagnosis was outsourced to a provider outside of the NHS, further emphasise the need to have proper post-diagnosis reviews and assessments, which must be conducted face-to-face, which must become a basic legal entitlement of the person diagnosed and a basic legal requirement on the relevant providers, in this case the external provider and the NHS, on an individual “case-by-case” basis - this must be properly done to (properly) assess level and type of autism (and any other related Co-conditions) and to (properly) identify any relevant and appropriate levels and types of supports going forward, again on a “case by case” basis, not a “one size fits all” model that seems to be currently applied - and very often, this would result in significant cost savings for the NHS in the short, medium and long term, without requiring any additional funding (public funds - taxpayers money) as outsourcing NHS services to private providers is at much higher costs and higher risk of inaccurate diagnosis 

Children
No Data