Published on 12, July, 2020
Hi everyone.
I've been reading this forum for a few weeks, and have just plucked up courage to actually join in! I'll try to keep my post as concise as I can. I am a 55 year old male.
Back in May, I decided to read up more about autism, as I didn't know much about it. My sister works one-to-one with children with autism as a teaching assistant, hence my wanting to find out more about the subject. I came across the AQ test, and out of interest, completed it. I was astonished to find my score reading 40. I also discovered and completed the RAADS test, and this too showed me above the threshold. I tried re-taking the tests, but each time getting similar scores.
I spoke to my sister about the results, and she surprised me further by confiding to me that she has suspected for some time that I might be "on the spectrum". My RAADS test score suggested it might be worth speaking to a health professional, and with support from my sister also, I spoke to a GP about my concerns. I should add that I did a lot of research online, and found several websites (including the NAS one and others like help4aspergers), which were revelatory for me - describing a whole list of AS/autistic traits that I recognise in myself, including many positive ones. I explained my concerns to a locum doctor at our local practice, and she was excellent, referring me to the MHU of our local hospital (I understand that getting a referral is sometimes the hardest part!). In the Initial Assessment, they told me that I did indeed present with several autistic traits, and I received a letter soon after confirming I will be referred for a Full Assessment. The downside is that, in our area, the waiting list is 18 months to 2 years! Self diagnosis is not an option for me - I only feel comfortable with an official diagnosis.
At this point in time, and for some time to come, I'm going to be in the middle, not knowing where I stand. I'm aware that people can show some autistic traits without actually having an ASD. I also find that I'm less affected by some traits, yet others affect me considerably more so, and from what I can gather, everyone with an ASD presents differently - hence the "spectrum"...?
I know at this point I shouldn't necessarily jump to any conclusions as to whether I am on the autistic spectrum or not. I should add that I don't feel wary of it either - I would feel quite comfortable with a diagnosis of ASD if it did happen, as it would answer so many questions as to how my life has progressed (or not). As mentioned earlier, the last 3 months or so has been revelatory for me.
It's going to be a long wait for the Full Assessment, but being part of this forum I'm sure will provide support and friendship in the meantime - and after, too - whatever the outcome!
Hi Classic Codger,
Many thanks for your reply. I've read your replies to many other new posters on this forum, and your comments in answer to my post make perfect sense. Your post has indeed been interesting. I've read a reasonable amount about ASD now to know what are the main traits to be aware of - it was reading these that enabled me to realise how many I recognise in myself. But now I feel the best thing would be to listen to other people here on the forum, and read the relevant blogs, to gain more of an insight from all sides - those like me awaiting Full Assessment, and those like yourself who have been given an Assessment of ASD.
I can completely understand the idea of "finding out who you are", as, even with only my limited research, some things seem to have become quite clear to me. The two consultants who were with me in my Initial Assessment said that they could appreciate my wanting a "label" to attach to my feelings, but not to worry too much about that at this time.
As you say, it must feel a bit strange to get the diagnosis, even if one has an idea of it beforehand, but then this is where communities like this one really prove useful.
Hi CherryBlossomTree,
Many thanks for your reply. I very much relate to your feeling of being "in limbo". It's good to hear you've been referred too, but it's the waiting that can be so unsettling. I hope you get an appointment for your Initial Assessment soon - even though it can be a long wait for the Full Assessment, at least you know that you are "in the system". Thank you for the link to your blog - I'll bookmark it. It's good how we can all share these common experiences.
Hi Telstar. Hope you find this interesting...
I was diagnosed at 59. At 58, it was suggested to me that I may be autistic and I was asked to fill in an AQ test that went off somewhere. I was then told that the test indicated a full assessment, which I got 1 year later.
At the point where it was first suggested to me, I was astonished and felt exactly the same as you do now about so-called self diagnosis, as I feel that it can be dangerously misleading. For me, only the facts will do, so I avoided reading anything about ASD because I wanted the assessment to be 'honest' and that meant going in without the possibility of traits being implanted in me by suggestion or recognition. You are right, and we often discuss it, that whilst we have a commonality, all ASD people present various aspects slightly differently.
This is a nervous time for you - wanting to 'get on with it' but at the same time trying not to get too involved untill you have a definite, independant opinion that you can trust and rely on. I'd encourage your approach because it was also mine, and looking back I'm glad that I made that choice. It means that I couldn't have adopted or exagerated any of the diuagnostic criteria during my interview - it was important to me that the assessement was of the 'real' me. I look on my diagnosis as the uninfluenced and genuine professional view, and I can rely on its' being true for all those good reasons. This is something that is glaringly missing from 'self-diagnosis', and I support your being wary of it.
The experience has been revelatory for me, I describe it as finally finding out who I am. I only got the diagnosis a few months ago, since when I've found my community here (never felt I had one before) and the more I talk, the more I understand who I am. I simply cannot express the impact of being given the diagnosis. Like you, I wasn't afraid of getting the diagnosis, I found it intellectualy interesting, if anything, but when it was confirmed - it was 'strange' in the extreme (I have spoken with others about this one and it appears that it's a known reaction) and I'm still finding my feet, thanks to the help of this, my community of other AS people.
I'm reasonably new to the forum and am awaiting initial assessment - I'm a 30 year old woman. Only last month I felt able to take my suspicions about a diagnosis to my GP, and she agreed to refer me. I completed the referral form and returned it straightaway, but am awaiting further contact, which is not helping my anxiety greatly and I feel very much in limbo. I don't want to start saying, "I'm self-diagnosed Asperger's" and have people be disbelieving or thinking I'm attention-seeking... but I do genuinely struggle with some aspects of day-to-day life far more than others. I'm hoping for help, support and friendship on this forum too. I've started blogging my thoughts too in the hopes of helping others who may be on a similar journey. (http://iammyownexperience.com)