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Worried if assessment came to wrong conclusion.

Jonathan

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

  • By the time I was due to be assessed my mum was dead, and my  father was living in the States. He couldn't see much that indicated I had autism. However at 88  , he may have been comparing me  to a much more severe group of autistic persons. My sister, who is 3 years younger than me provided evidence . As did my 'daughter' who had known me at the time for  36 years.It was reckoned that on the evidence provided the symptoms would've been present at <36 months

  • in reply to Deleted User

    I do not recognise the need for 'symptoms' having to occur before 3 years of age being valid. Diagnostic manuals recognise that autistic traits might not be recognisable before social pressures - such as starting school - exceed the ability of the autistic child to cope with them.

Reply Children
  • in reply to Martin
    Martin said:
    I do not recognise the need for 'symptoms' having to occur before 3 years of age being valid. Diagnostic manuals recognise that autistic traits might not be recognisable before social pressures - such as starting school - exceed the ability of the autistic child to cope with them.

    I agree Martin

    My son did not show much in terms of visible signs of autism before year 4. When social and academic pressures came into play he could no longer hide his anxiety. He got diagnosed 2 weeks ago. 
    Im glad he doesn’t have to fake life like I did now. 

  • in reply to Martin

    I think this is true. If you are above average intelligence then much of life and school can be ok and you can appear on the outside to be coping. This was me, until I hit A levels and university and employment. Life for me then became very very hard, and it continues to be so. Especially since my late thirties and forties I found that I had given so much previously and now had nothing to give.