Published on 12, July, 2020
Just to say, I do mention about my depression, suicidal ideation below.
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I'm pretty new to the idea that I could possibly be autistic. But at the same time I can agree with a number of symptoms, I also worry that I don't have the 'right' symptoms to make a diagnosis.
First off, I've done a lot of reading, and there's a lot of signs that I can really connect to, but there's others I really don't. Part of this research is I did a few well-regarded tests, the AQ, EQ and RITVO. I've done them a few times, and gotten similar scores. Here they are:
My AQ was 34 out of 50. My EQ was 18 out of 80.
The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) score was 173. I exceeded the threshold on every part.
I also did the Aspie test and got 132/200 on the Neurodiverse, and 84/200 on the Neurotypical.
I understand this is not a diagnosis, but these and the connection to a lot of the signs listed on the NHS website were what prompted me to get an appointment with the GP and start a referral process.
My case is going to be compounded by a single thing: I'm hard of hearing. Given that I probably had a hearing defect since birth, which was undetected until a primary teacher notice I was lip-reading, this has possibly shpaed my development as much as autism probably would too.
Given my hearing difficulties, my early development was probably 'normal'. Nobody suspected anything was amiss. Apart from me being a quiet kid. I said my first word at 6 months, and everything else happened as expected I think. (I don't know, I can't recall much prior to the second school I went to).
I recall my parents telling me I mimic'ed other kids pretending to be Daleks from Dr Who (we didn't have a TV at the time), and I bottled up my anger/conflict issues from a very early age. I would often just go quiet when things didn't go my way, or something was overwhelming. I could travel from my home (near London) to Liverpool to visit relatives in my early teens because my parents knew I would not deviate from the schedule that got me there.
I had few friends at any one time - usually one or two, and during some parts of secondary school, I had up to four. My first 'relationship' with a girl was an intense, emotional failure. I was besotted with her, but after a while she was bored of my predictability. I never kissed her. Didn't know how to approach doing that. I was 17 at the time. I would be 32 before I met someone else, who I ended up marrying. She's super supportive of me getting a diagnosis, thinks a lot of the signs are there.
But I doubt. I guess it's my nature to analyze everything. Even the smallest thing that causes doubt in my mind will mean the possibility of a positive diagnosis is in jeopardy.
I've struggled with depression since the first time at college. I had the first thoughts of suicide. Fortunately, I have never gone through with any act in my life, but I've come very very close at times. I've struggled with anxiety, both from stress at work, and from social worries. I never felt as though I fitted in anywhere. I once thought about suicide on the way to a friends 18th birthday, I just didn't want to be there that much.
But doubt creeps in because I never considered myself to be overbearing, except in rare circumstances when I could talk and talk and talk. Often I just let everyone else talk, and I just watch. I'm not rude - even unintentionally. I keep a little distance from people because it's easier to lipread, plus if they're gonna hug, I can try and get out of it. I'm polite to people - I can say 'good morning' when I'm out with the dogs, or let my elderly client who can't get out of the house waffle on about something. Just don't expect me to make conversation much.
I've lived most of my life with this expectation that you're happy when you have friends, you go out and do things with them. I'm the opposite. Now I'm in a job (self-employed) where my contact with people is minimal at best - I'm actually pretty damn content. But that's hard for my wife.
And that's another thing - I've held a job pretty much all my adult life. When I look closer, it's plagued with poor performance, depression issues, and in one job, two nervous breakdowns.
Right now, I have one online friend, and that's it. No real people local to me. I'm not even that bothered to go out and look. I just don't connect with them. Well, that and I'm an alcoholic, and would much prefer to be sober than having to endure going to the pub (a very very common social activity where I live).
So tomorrow I am off to my GP. To me, it's the biggest thing I've ever done. More so than going about all the depression, anxiety, that I've had before. This is possibly life-altering for me. And I don't know if it's the right thing. There's part of me that doesn't want to waste the NHS's resources if I'm going to be a negative diagnosis. Part of me is scared because if I start this process, at some point my parents are going to know, and I don't know how they're going to react. I can't stand tension or conflict - I blame myself for it if I encounter it and find it very stressful. Even people arguing in the street, I just assume it's because of me. On the other side, I think my father would be understanding, and probably downplay it from autism. My mum is the wildcard - a sometimes fiery woman, sometimes soft and caring. If you were to ask me how she would react, I'd just have to shrug my shoulders.
Does anyone else have this doubt, even at this early stage? Is it normal? I'm aware that it's not a complete the tickboxes, but is the ability to 'function' day-to-day going to count against me?
Argh I wish I could shut my brain off sometimes and just be spontaneous, but then I wouldn't be needing to see the doc!
Your' post sounds so familiar. I am 60 years old with 30 year old daughter. I have been trying; since she started school to have a diagnisis for her to receive help for her symptoms; there have been various reasons given by "the Professionals" why this has not or cannot be done. She has had numerous medications that have had varying degrees of helpfulness. This has mainly been by zombifying her.
She has had various jobs since leaving school, none have really been chosen by her, just circumstance. I had to collect her from one (a GP Surgery !!) when she (thankfully) phoned me to say she was going to jump infront of a train). The bullying manager had been constantly picking on her. She was trying to do what she thought the patients needed not what service manager procedure was. Unfortunately because she has been able to hold down a job; however fleetingly, she cannot possibly have autism. Same argument for tenancy agreements; all she says she wants is stability but you don't get that with many landlords.
She has now had a referral through for an assessment which includes a lot of forms about her developmental history. She has asked me to complete one of these forms as she thinks I know her best; especially from young age. I'm ok with it except I am concerned she will take everything I put down as a criticism and decide I hate her. She has always had a belief that she is not good enough especially for such a smarty pants mother. This is not true and I am scared that she will take it as a personal slight and I won't see her again. She is actually a beautiful person without malice. She just seems to not fit in with general public and I believe "misunderstood".
I think if your mum is anything like me she will want whatever it takes for you to be supported by the world as you are. My daughter is not the easiest to be with because at times she is black and white and very determined when she believes she is on the right course.Even when I am not she believes any negative thing I say is referring to her. I am not the most patient person and she has accused me of bullying in past when I have tried to explain why certain behaviours are not acceptable to other people. You say your mum is fiery; me too. my daughter has said she does not come to me because she is scared. she believes I am an angry person. Where she is concerned I AM. Life has dealt her a very poor hand; but she tries so hard and ends up exhausted.
Mostly I believe other people have the problem not her. She has said that she thinks I am autistic too. I did those tests you spoke of and it indicated I definately was; this would explain a lot !!
Try your' best to be open; maybe ask your' mum to help with early years (were you different to your' peers and in what way). There are parts of you that no child shares with parents but other people can fill those gaps in.
If you have it or not the people that matter will always have your back anyway. "The world is a stage" ever heard that expression? I grew up with that in my head and spent nearly all my life showing the world the person I had discovered people liked (a lot). I believe my daughter does that to a degree. Very few people know the "real" us. If you do that; try not to do it for the professionals. It is a kind of camouflage which I believe girls are/were better at than boys at portraying. This was one reason autism tended to be a boy thing years ago.
I am so glad you have someone to share your life with.
Good luck. Whatever the outcome.
Thank you for taking the time to read/respond. I since had a discussion with my wife about the doubts. She laid a few to rest.
You mentioned a few things that stood out to me:
"Unfortunately because she has been able to hold down a job; however fleetingly, she cannot possibly have autism." - this is a doubt of mine. I've been able to have jobs, although I've not had a career. My jobs, like those of your daughter, were more out of circumstance.
"She has always had a belief that she is not good enough" - oh this is me all over. Never been good enough, never will be is pretty much how I've lived. It's annoying as I know I can be articulate when I write, I can really care for those around me, etc. I can grasp highly technical abstract concepts and ideas (especially in programming/web development) very well, but it's not enough in my opinions.
"She just seems to not fit in with general public and I believe "misunderstood". " - I totally relate to this. Being someone with such niche interests, dismissive of pretty much everything conventional and popular never made me lots of friends at any stage in my life, from early school onwards.
My concern with my mother is that she will blame herself. Given that mental health issues have affected my mum too (my father had a serious bout of depression for a couple of years, his brother is going through the same), she's probably sensitive to those - however with autism being lifelong it may be something she feels she has given me. I hope that makes sense.
"Very few people know the "real" us. If you do that; try not to do it for the professionals." - this is sound advice. I've tried my hardest to be as open as I can, but I'm not a loud, meltdown kind of person. I'm the one that clams right up, doesn't say a word, etc.
Part of me really needs a diagnosis so I can say 'Thats it. Thats why I am the way I am.' and plan/adjust/get on with my life. I'm glad my wife is here with me to help me do that. Doubt makes me feel that it's not right, not worth it. I never really wanted autism, but if that's why things are the way they are with me, then that's what I have. I just have to be 100% sure it is.
Hopefully I'll present my case well enough with the GP that I'll get the referral, and tomorrow I'll have a little relief knowing the first stage is out of the way.