Published on 12, July, 2020
Hi everyone.
I am new to the forum and have what I hope will be the third and final part of my assessment at the end of next week.
I was teased by colleagues at work about being autistic about 10 years ago (I am now 45), I read up on Aspergers on Wikipedia and it was like reading my life story. I never took this any further though. My wife did some training last year on working with people with autism, and identified that I had many of the traits. We did a simple 10 question test (10/10), then a 50 question test (47/50), so knew if was something to investigate. I have had an initial mental health type assessment, the first part proper of the autism assessment, and have the next one next week.
My wife has been so supportive and so have my children (aged 11 and 8) who we felt we needed to tell about the assessment. However on speaking to my father and sister (my mum is sadly no longer with us), they (and I appreciate it may have been a shock), pretty much just didn't believe me. When I went through the questionnaire with my dad he pretty much just said no to every question, although when I explained how I felt on some of the questions, his replies were that he felt the same (but that he was not autistic), or that "loads of people feel that way". I tried to explain that it was the number of situations that I looked at in that way, and the links between them that pointed towards me being autistic.
So I am wondering in this period before the next assessment, how others felt before and after? I am hoping that getting the diagnosis will be a positive thing, and will explain a lot of the reasons I feel and act the way I do, but I have also read about people feeling a sort of grief that they only found out so late in life. I wouldn't change my situation for anything, but I can understand I may feel something when I look back at life perhaps being more difficult than it needed to be?
Would appreciate it anyone would take the time to help me through this period, with their own experiences, thanks.
I got diagnosed in November 2014 at the age of 51 and found the process mentally exhausting and draining. My mother was unable to help because of her infirmity and dementia and my father had died in January 2006. When I finally got diagnosed after three months of assessments with the support of my MIND support worker, I was given my verbal diagnosis. I asked the assessor to write to my older sister to explain my diagnosis which they never did. They claimed in my short report that they gave me a social skills book which they never did. I was not offered post autism diagnostic support even though I asked for it because of my age as they only gave support from 18 to 30. I felt abandoned and lost after my autism diagnosis and found there was no autism specific support in Thurrock. I was unemployed when I got my diagnosis and was suffer from severe mental health issues which included social anxiety and OCD. I left school without any qualifications as I greatly struggled in school and college as well being diagnosed with epilepsy at the age of 7 which I still have. I have had a very poor employment record as my most of my life I have been going to admin office courses and work experiences that led to nothing and attending the job club. It took three months to get my post autism assessment and diagnosis short report which I only got after help of others who telephoned on my behalf to ask for my short report and it took a lot longer, just over a year to get my full report and it was only from the help others that even got my report. My GP health practice never knew I was diagnosed with autism as they were never sent a letter informing them of my diagnosis. I had to do it by sending them both of my reports and it only was three years ago that my autism diagnosis was put on my records at my doctor's surgery. Prior to my autism diagnosis I was having to be constantly scrutinised every two weeks to show the Jobcentre that I was applying for the right amount of jobs even if I was not qualified for and did not have any experience in and was too far me to travel to along with lack of qualifications. After my autism diagnosis my mental and physical health greatly deteriorated and I ended up with being diagnosed with fibromyalgia and I have just had a dyslexia assessment showing that I have considerable difficulties with spelling, grammar and comprehension. It took me from 2014 to 2018 to be accepted for autism social skills and anxiety management and it was only because I was referred to the local mental health outpatients that I asked for autism specific support. I am still struggling to make friends and there are no befriending schemes for adults in Thurrock as they only cater for children and those over the age of 60.
Sorry to hear how difficult it has been for you. I can sympathise with your situation. Many of us here have also encountered difficulties and delays due to admin errors and had to work really hard just to get an assessment/report. I hope you will be able to find some friends and companionship on this forum even though it may be hard to find a support group where you live.