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turtledoodle
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Joined: 21 Jun 2017
Age: 27
Gender: Female
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Location: UK

21 Jun 2017, 1:32 pm

Hello all.

I just made an account on here today (yay!). I suppose what I am looking for is to share my thoughts and experiences, as well as gather advice and input from others who can relate to what I am saying.

A brief introduction to me: I am 25, female, based in the UK, and for a few years have suspected that I have some form of autism. I also identify with a lot of aspects of ADHD. I won't bore you with all the nitty gritty details of how and why I think I may be autistic - at this point I really have no idea if I am or not - but here is an overview of some of my experiences. Some of them may sound familiar to you, some not.

- As a child I was very much a self-contained individual. Naturally quite outgoing and sociable, I enjoyed playing with other kids and wanted to be included in their games. At the same time I always had something very singular about me. I would create elaborate fantasy worlds populated by imaginary characters. Sometimes other children were included in the games, but I was often just as content playing alone. I was highly verbal but physically uncoordinated. I enjoyed collecting information (mainly about history, animals and the natural world), categorising objects and toys, and engaging in play/activities that consisted of repetitive movements, such as pulling books off a shelf one by one and then replacing them meticulously. I enjoyed memorising songs and poems, and then repeating them for hours.

- I had a number of habits that I have come to understand as stims, most of which I still do now. These included twiddling the tips of my hair, cracking my wrist joint and stroking parts of my face with one fingertip (the latter I normally do when I feel stressed or if I am concentrating on reading or watching a movie). Other kids used to make fun of me for doing this, when most of the time I wasn't even aware that I was doing it or why. I remember an incident from when I was around 7 where a parent became furious with me because I was rhythmically knocking a spoon against the edge of the kitchen table. Again, I didn't know why I was doing it, only that I liked the sensation and the gentle rhythm it generated.

- From around the age of 8, I began to get a creeping sensation of isolation from others. Despite being friendly and curious about getting to know my peers, they only seemed to find me weird, confusing and boring - or often a mix of all three. I couldn't understand why I only seemed to be met with awkward silences and smirks whenever I opened my mouth. What was it I was doing or not doing to warrant such reactions? I was an easy target for playground bullies, and over time I became socially anxious and withdrawn. The fear of being ridiculed has never fully gone away.

- In secondary school my social problems were only magnified, and were only compounded by my problems with self-organisation, executive function and motivation. In primary school I had been a good student and felt unchallenged by most subjects, but then my parents had always helped me stay focused and organised. Finding myself in a competitive grammar school was different. With less input from my parents, I found myself struggling to keep track of homework, and I was always losing things. Forgetting books. Mishearing instructions. For a year I had a small group of friends, but then a minor misunderstanding between me and one girl led to all of them cutting me off and ignoring me. Eventually everyone in my yeargroup began to ostracise me and this carried on for the entire duration of my time in grammar school. In retrospect I am grateful that it was mainly ostracism. Although there were plenty of instances of verbal bullying too, it was being ignored that really cut me deep. I became depressed, apathetic, desperate for positive attention and totally uninterested in anything around me. Over time I gave up on all my hobbies and special interests, preferring to chat to strangers online and play computer games. At 18 I was diagnosed with moderate to severe depression and anxiety.

- Despite mediocre grades I managed to get into a good university in London and began to study Drama & Theatre, but once again found myself socially isolated there. Although I did make a handful of close friends outside of the university campus (most of whom were similar to me in personality), I struggled with severe anxiety and often couldn't face leaving my room or going to lectures. I just couldn't motivate myself to complete assignments and felt like such a failure in every respect. As badly as I wanted to make things work, in the end the depression was too much and I ended up leaving after 2 years without completing my degree. I also had 2 serious relationships in that time which were highly toxic and abusive (one of them included physical abuse). Because of my poor social skills, I was not able to see how manipulative those boyfriends were, until it was too late.

- In the time since I left uni, I have been living at home with my parents, working at various jobs and trying to create some sort of life for myself. I am now in a very healthy, happy, stable long-term relationship with someone who really understands and appreciates me. I also have managed to make a few more good friends. However I am having serious issues with employment. Although I have a job that is a zero-hour contract and have managed to keep it for almost a year, I don't earn nearly enough to be able to afford to move away from my parents' place. Nearly every job I have ever had has resulted in me either being fired for mysterious reasons (or no explanation beyond "we feel you don't fit in here"), or me being forced to quit because of unbearable stress, workplace bullying, mental breakdowns and physical exhaustion.

- In April I managed to get a 2nd job, alongside the zero-hours one, but last week I was fired from the newer one. This has come as something of a surprise to me as I was really under the impression that things were going alright and that the managers liked me. I was aware that some of my colleagues didn't like me and I am now wondering if perhaps they talked to the managers about me. To be honest I don't particularly care if people don't like me at work, as I am used to being an outcast or looked on as "weird." I'm never there to make friends, but I always do my best to be polite, friendly, respectful and communicative wherever I work. I am aware that I am not always the quickest when learning new procedures, particularly when it comes to physical things. Verbal instructions can be tricky for me, and I sometimes have to ask colleagues to talk me through things several times before I fully understand, and if I am not 100% sure I am doing something right, I will always verify with someone more experienced than me. Purely because I hate making mistakes and I would much rather swallow my pride, ask for help and deal with appearing foolish than actually make a slip-up and then be blamed for it anyway.

- I do consider myself an empathetic person. In many ways too empathetic. Emotions easily overwhelm me, both my own and other people's. If I see a person or animal in distress, I feel physically hurt myself. At the same time I don't really understand what I am feeling at any one time. I can only identify and analyze them once they have passed. When I was a teenager my emotions were much more unstable, but nowadays most of the time I feel sort of blank. Like a clean canvas.

- Although I have got much better socially in recent years, I am still acutely aware that there are a lot of things I do not pick up on from other people. Whether they be verbal or non-verbal cues, I still don't always know how to "read between the lines". I used to struggle with humour and sarcasm a lot. I was always the last to pick up on the punchline or point of a joke. Also others would often think I was joking when I wasn't, or that I was being serious when I really was joking. I am often told that I have an intense, even overwhelming presence. My interests in drama, acting and psychology have helped me become more socially aware and adaptable to other people's body language and tone of voice. Through sheer determination and habit I have forced myself to develop a social persona. Sometimes that persona takes me places and helps me foster good relations with other people. But it can only take me so far. I do sense that sometimes people can see through it and then come to the conclusion that I am a "fake" person. Either that or the exhaustion of "keeping up the act" catches up with me and people begin to see how I actually am... and of course, they don't like that either. :?


As yet I have not taken any steps towards seeking a diagnosis, partly because I struggle to begin new things in my life, and also am daunted by the prospect of a long NHS waiting time. I have tried to approach the topic with GPs before but they have been very dismissive (despite hardly knowing me at all), and I cannot afford to seek a diagnosis privately.


In many ways I have sort of made peace with how I am. I am learning to see my "oddness" as an advantage, even though it really doesn't feel like one at times. I believe I would be 100% comfortable if I was diagnosed as being on the autism spectrum, as it would at least give me a feeling of vindication. I would feel more empowered and able to advocate for myself. It would be a means by which I could quickly and easily explain myself to others.

What do all you guys think about diagnosis?
Has anyone ever received a diagnosis they felt was wrong or that they didn't agree with?
What about Aspies (is it okay to use that term?) who haven't been formally diagnosed but who nevertheless strongly feel themselves to be on the spectrum? Is there a strong division between those who feel self-diagnosis is legit, and those who don't?
And for anyone who has been diagnosed with autism in adulthood... how did you feel afterwards? How has it made life easier or harder?

Sorry for the barrage of questions.
Oh, and the wall of text.
I haven't written anything in a long time so it all came out in a bit of a rush.
If this is far too long to read, I'm so, so, very sorry.



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21 Jun 2017, 2:27 pm

turtledoodle wrote:
What do all you guys think about diagnosis?


Saved me from homelessness.


turtledoodle wrote:
Has anyone ever received a diagnosis they felt was wrong or that they didn't agree with?


I could quibble with a few details, but no, largely I concur with the DX. After all, I requested the evaluation, because I was already certain I fit the diagnostic criteria to a tee. And I did.


turtledoodle wrote:
What about Aspies (is it okay to use that term?) who haven't been formally diagnosed but who nevertheless strongly feel themselves to be on the spectrum? Is there a strong division between those who feel self-diagnosis is legit, and those who don't?


I like the term "Aspergian," but I can't say it's caught on yet. :mrgreen: Depends entirely on who you ask. I generally don't look down on those who are self-diagnosing, although I would encourage them to keep in mind that the entire purpose in seeking diagnosis is because we are amateurs, not trained experts.

That said, I've heard enough horror stories here on WP to realize that many "professionals" with no practical experience working with autistic adults are unqualified and incompetent to see through years of coping mechanisms and recognize adult autism when they are confronted with it. So even getting a fair shake from a Degreed Mental Health Professional can be a crapshoot.


turtledoodle wrote:
And for anyone who has been diagnosed with autism in adulthood... how did you feel afterwards? How has it made life easier or harder?


:lol: Speaking of walls of text, there's the $64,000 question. I'll try to encapsulate as brief an answer as possible (but I tend to bloviate). Personally, I suspected my autism as early as 20, was confronted with the whole notion of Asperger Syndrome or HFA at 45, and officially diagnosed at 49, through a sheer stroke of luck - and it was very lucky for me, as my career was finally tanking for good, and at 50 I reached the age at which my AS qualified me for SS disability.

So the (hopefully) short answer to your question(s):

How does one feel afterwards? Well, the most common reaction seems to be a mixed one:

At first, a sort of euphoric excitement, as one learns more about the disorder itself and begins to understand just how thoroughly and completely it has affected your life, from the time you were a small child, right through to the present. There's a catharsis, as one realizes that all the psychological abuse and bullying one has experienced, all the stress and pressure to be something you knew you weren't and could never be - all that was not, as you had been told for years, the result of a defective personality, nor stubbornness, nor laziness, nor obstinance nor insubordination - but the result of a neurological dysfunction - a set of miswired neurons in the brain, over which you had no control. It's not your fault. There's a freedom, and a righteous justification that comes with that. Screw you, world, you were wrong about me! I told you I couldn't help being this way,and I WAS RIGHT! :wink:

Then, a few days, or weeks after that, a sense of melancholy seems to set in for a lot of us, as we come to terms with a truth that we've already known for years in our hearts, but is now spelled out in black and white on some psychologist's stationary - we have a permanent handicap in our brains and it's never going to go away. There is no cure, and only limited hope of developing coping mechanisms to deal with it. In fact, if you're already an adult when you're diagnosed, chances are you've already taught yourself to cope with it about as well as you ever will. It simply is, as they say, what it is. We are permanently handicapped, and that's that. Again, it's not like we didn't already know that, it's just different when you confront it as a concrete, objective, wall of reality. It can be very depressing.

Those are the common emotional reactions. Then there's the weird realization of just how autism is actually affecting you in real-time. This is not so much emotional (though it can trigger many emotions) as more purely sensory. It's sort of like when the ordinary schmuck in a comic book movie discovers for the first time he has superpowers. Only a lot less fun.

Things you've experienced your entire life suddenly take on a sort of hyper-reality. All those background sounds that have always subtly distracted you - the human activity and mysterious social cues going on around you - the sensory phenomena that always felt weird and uncomfortable - now that you understand WHY they affect you the way they do, you will notice them even more acutely than you did before. Not because they're any more intense than they ever were, just because you're AWARE of them now. Before you may have felt the increase in stress they were causing you, without understanding what was causing it. Now that you know what's causing it, you won't be able to NOT notice it.

And so it begins...


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21 Jun 2017, 2:42 pm

Welcome to Wrong Planet! :)


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25 Jun 2017, 11:39 am

Always seek a diagnosis, if not then you will regret it.



jamesthemusician
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26 Jun 2017, 10:15 am

For the longest time, I ran away from a diagnosis. I really wanted to try live this life without a label, like every other neuro typical person. In fact, for the longest time, I felt the word "autism" was a curse word to me, and that I didn't want it: I didn't want to be associated with other people with autism.

However, earlier this year, I lost my job after like the 4th or 5th time, and remembering the history of how I was bullied in school, and how I found it so difficult to make friends (and becoming really upset and depressed about it), watching Julia on Sesame Street was the last straw - I decided to be assessed.

That was back in April; and just last Wednesday, my doctor has written me a memo stating that I am being assessed for ASD, while I am waiting for a full assessment. That is in effect a confirmed diagnosis for me.

And now, I volunteer in the autism ministry at my church every Saturday - now, I am honored and blessed to be considered alongside these very special children - children and individuals with autism, just like me.

I really wanted write more about my past, but I wanted to keep this a short post, and to save it for a more purposeful one next time. But my advice to you is that you know who you were best - you know how much you suffered back in your childhood, in school, at home and at work. You probably have been reading up, and you have been learning more about yourself, autism, and you probably are confused and worried about your situation. No matter what people might say whether you have or do not have autism, let me assure you that you are most probably right about your situation - I encourage you to go ahead with the assessment to prove once and for all if you are on the spectrum. Trust the doctor that he will do a good job on you. Along the way you might face a lot of anxiety and a lot of mental anguish while waiting for assessment - I know how it feels! But trust me, the knowledge you'd gain from learning about autism, and learning that you may have autism, and learning your strengths and weaknesses, will go a long way in equipping you with the knowledge to face your life ahead.

All the best!

Edit: P.S. I actually don't like the term "aspie". I don't mind being called an autist, or even autistic or "an autistic person", but I don't like the word aspie; it sounds like a terrible contraction of "Asperger" that doesn't sound cute and sounds more like an insult to me. There you go!



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26 Jun 2017, 11:08 am

I see it as a cost/benefit question. In the UK the cost to get a diagnosis is low, so you should get a diagnosis.
In some places, the cost is prohibitive to find out something you already know, so a diagnosis may not be practical.



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03 Jul 2017, 5:58 am

Being misdiagnosed as a young child was awful. I was labeled/ diagnosed with nvld/ asd when it should have been ADHD and anxiety.

Once I got proper diagnosis I could fix or work on things holding me back.

Only person who knows you is you. I don't believe in self diagnosing, but if you go seek a professional and explain why you are under the impression it can hopefully help them see eye to eye.



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13 Jul 2017, 6:56 am

I would go along with much of what is being said here. My autism has stood in plain sight for 17 years which I have been professionally involved with children with a learning disability as a coocurring morbidity with autism. I have trained residential and educational staff delivering SPELL and other autism training for many years, and totally failed to self diagnose until 18 months ago. I was diagnosed privately very recently and despite being totally prepared for outcome it still feels surreal, not quite true. I am fortunate that I have enough money to go private, the waiting time was only a couple of months, which was cut down to 10 days after a cancellation (I cancelled twice before going for my assessment)

I needed to know because I could not go on just guessing.

My main issues are overload and anxiety. I don't like people, I don't want to talk to them (unless its about something which I am interested in of course) and I am not really interested in listening about stuff which has absolute nothing to do with me. But I can't avoid them, we are all forced to interact with the buggers, but at least when I get in and have to to bed and reduce my information and sensory input I know its because I am autistic, not because I am weak or lazy. If I am blunt, don't want to go out or leave somewhere the moment I arrive its not because I am anti-social or in someway being a bad person, I can explain it, I am autistic.

A diagnosis is not a get out of jail free card, it does not mean we can behave however our autism would like us to, we are going to get into bother if we do. a diagnosis however it does set you free to be kinder to yourself. I have hated myself for my entire life, all the stupid inept cringeworthy social interactions I totally screwed up, or the endless years of bullying at school when I stood there and took the kicks and punches without ever fighting back, not because I was a coward (which I thought I was for almost 10 years) but because I am autistic.

It was still a very surreal experience the first time I was called autistic and strangely liberating. I know a little about the the wiring differences and the poor connections of our neural pathways but be warned its still sobering when someone tells you that your braining is not wired in the same way to everyone else.

I don't think not knowing is helpful, I don't think that knowing is unhelpful at all.


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