I didn’t watch the documentary on the adhd assessments scandal last night. I had comments about it all over my social media so I fully got the picture despite not actually watching it.
Anyway, I’m here to discuss the whole process of getting assessed and diagnosed as a general issue not directly relating to any media item in particular. I wasn’t diagnosed with any form of autism until 16. I went through school with various people identifying that I was ‘different’ but not putting a label on it. Years later, after all the information in my notes came out when my son got adopted I found out that they had suspected that I had a form of autism at 10 years old. I went to CAMHS service for years but never got given a formal diagnosis. I saw a different professional, normally a psychologist or psychiatrist each visit. I was put on a list for speech and language therapy but that never materialised due to the long waiting list and I wasn’t diagnosed as a child so therefore never going to be a priority.
The services knew that I was struggling at school but never gave me a diagnosis. That resulted in me getting excluded permanently and not being able to take my GCSEs. I was given a few things that I could take for final exams like the English gcse and a test to get a maths pass. They had to do that for equal opportunities. I obviously couldn’t pass them because I had been kicked out of school several times. I had missed so much education. I also missed parts of my education when I had epilepsy. I had appointments at the hospital during school days when I was at primary school.
Eventually, the only way I got a diagnosis was through my father writing to the local MP. I had to be diagnosed by a team of professionals from Birmingham (the other side of the East Midlands, I live in Leicestershire). It was a forensics team because apparently that is how people are categorised if they’ve had police involvement for whatever reason. I had to fight to not be under that team after my son got adopted because I argued that if it wasn’t for my autism I wouldn’t be the type to commit a crime. I stick to certain rules religiously. I will lecture others for doing immoral stuff, e.g stealing, vandalism etc. I certainly would never steal or damage property. I had to fight all the information that led to me losing my son. If I’d have known what was written about me before I would have ensured I fixed it before having my son. I wouldn’t have been put on a pre birth plan before I even had a chance as a mum then, the criteria wouldn’t have been met. There are many benefits to getting a formal diagnosis. I had my diagnosis used against me. I also found it useful to get financial assistance in the form of benefits due to being unable to work so far in my life. There is no proper support available even for those with official diagnosis. It will sometimes help. There is no guarantee that there will be support for a disability even if a diagnosis is officially made. I was still labelled a criminal, sectioned and sent to a low secure psychiatric unit even though the system had identified me as having Asperger syndrome. The worse thing about that was I had agreed to go into the psychiatric hospital voluntarily. I met the psychiatrist who ran the specialist autism hospital a few months before they sectioned me officially. I wasn’t refusing help. I was struggling and I felt it badly. The psychiatrist that ran that place knew the psychiatrist in Leicester who was an ‘expert’ in autistic spectrum disorders. I didn’t like his attitude. There are many so called experts in the system that treat service users awfully. He seemed to be one of them. I had to see him as part of the court process because he had to write a report for the judge.
Nowadays, there are levels 1, 2 and 3 of autism (based on support needs, 1 is low support needs, 2 is medium support needs and 3 is high support needs). Asperger syndrome, the diagnosis that I received no longer is used as an official diagnosis. I still have the diagnosis on my notes but I don’t use the term. It was named after a natzi that did experiments on people to see if they were useful or not. I feel that the term autism is a much more appropriate diagnostic label. I am not sure about the labelling of levels but it does make it more easier to identify support needs if it’s been part of the assessment process.