Hi,
Completely new to the forum and looking for some help.
For most of his adult life my partner has suspected he is autistic and age 47 finally decided to seek a diagnosis.
A bit of background, he displays many autistic traits and has struggled all of his life with social interactions, sensory overload and processing information, to the point he also suffers with anxiety and depression. He was able to work with his father in a joint business for a long time but now his father has retired he is not able to continue the business due alone to his difficulties. He has many other traits which I won't list here but he fits into ASD in all areas.
As for me, I worked with autistic kids for over a decade and strongly suspected he was autistic from shortly after I met him (many moons ago now). But when someone is so close to you, you fall into mechamisms that make it less obvious, so I never pushed the subject.
So with my support he self referred to the local adult autism service. The main reason for this was that he wanted a name for the issues he experiences and wants to get help to get into work, ongoing support and ideas of coping strategies. He would also like to meet other people with the same issues, so he can start to explore his identity and hopefully ease the depression he experiences due to being what he calls a 'weirdo failure'. He's not obviously, he's an amazing person with many gifts, but years of being 'different' have taken their toll.
We were told there were three possible stages to the diagnostic process and following them receiving his application form and having an informal appointment, they said he met the intial critera for a diagnosis of autism and they would like to assess him further. Firstly it would be an interview with a clinical psychologist and specialist nurse. If this wasn't sufficient to diagnose, they would interview me and one of his parents. Again if this was not sufficient he would be called for the ADOS.
We ended up completing all of the stages. My partner found the process exhausting and very anxiety inducing, it's been a tough journey.
We asked at the very beginning, if it's not autism, would there be support to found out what the issue is and get help - we were assured on three occasions that the results would be collated and discussed at a multi agency meeting, so if it wasn't autism, we would be signposted to the correct support and diagnostic service.
On another pertinent note, his family are not supportive of him being diagnosed, despite his parents admitting to me years ago in a moment of honesty they suspected he was autistic. There is a family attitude of any disability being stigmatic and a severe embarrassment to the family name. They have never supported him with his difficulties, laughing it off and calling him the black sheep.
So it was his father who was interviewed to ascertain whether my partners traits were present during childhood. My partner recalls this being the case, strongly, however from the get go we were concerned his father would essentially lie during the interview to cover this up. He is an intelligent man and will have likely researched autism assessments prior to attending the interview to talk about his son's childhood.
A month or so after the ADOS, my partner was invited for his diagnostic results. The letter stated the appointment would be with the clinical psychologist and specialist nurse. We expected to receive the diagnosis report and be given the opportunity to ask questions on the results, and either arrange support services if it was autism and be signposted to other appropriate services if not. For context we wondered about adult mental health services or learning disability services, we never assumed it would be autism, just strongly suspected.
As it turns out, we were in the diagnostic results appointment for 8 minutes. The clinical psychologist was not present, neither was a copy of the report. The specialist nurse appeared unusually flustered and told us very quickly that although he has 'many' autistic traits, he does not meet the threshold for a diagnosis of autism. When we asked questions on which traits he has and which he does not have, we were rebuffed and told the report would be emailed and we could reply with any questions. When we asked what our next steps would be to seek a diagnosis of something else, we were told to access 'talking therapies', we asked where we could access this and the nurse threw her arms up and said 'dunno'. It was a shambles and in all honestly we were both speechless.
We don't have the report yet and the nurse was not able to tell us when this will be ready either, so we both feel a little bit lost at sea. In fact he told me that evening that if I hadn't been with him, he would have found the nearest bridge and jumped off it. Not what you want to hear from the person you love.
I know we will have to await the report, we are guessing he doesn't meet the criteria because his father's testimony doesn't support his traits being present in childhood, or maybe my testimony showed he doesn't have enough traits, or even the ADOS, we don't know yet. Or he isn't autistic, just has many traits of autism and we will have to find support elsewhere - but where?
Can we challenge the diagnosis? Does anyone else have any experience of this sort of diagnosis issue? Any advice, ideas or suggested support services would be gratefully received. We just don't know where to turn or what to do right now.
Thanks in advance
