growing older with autism
sleepy
dolce_cantabile
The process of adult autism diagnosis can be a long, frustrating, draining and mildly humiliating process that makes one wonder what the point of it is anymore.
What will I get in the end? Will it be worth all the time and money? Should I get a full $400+ report when all I want is some answers? Who can afford such an expensive diagnostic process when these difficulties are the very things preventing one from succeeding in life and being able to afford such luxuries?
How do I know if I'm expressing things the right way if I can't have any feedback during the sessions? How am I supposed to answer such vague questions accurately (like, seriously, did they think about maybe consulting autistic people about how to express a question to a potentially autistic person?)? What if I don't get the result I expect, maybe I'm just the wrong kind of weird?
What if I do get my diagnosis, what happens then?

These questions are some of the many, many things I've been struggling with for the last 6 months going through my own diagnostic process. The worst part by far was the lack of people to talk to about the process - I don't really have close friends anymore, I didn't feel comfortable talking to my family about it after previous issues I've had trying to broach mental health subjects with some of them, and the few people I met who have actually gone through this experience with whom I talked to about it seemed at a loss of how to actually help or understand how I was feeling. Even my psychologist seemed hell-bent on hiding as much information from me as possible just to see if I go crazy enough to act out like a stereotypical autistic meltdown, while at the same time being completely oblivious to anything that was right in front of his face (I've only met one mental health professional before who was less observant than this one, and I've known a LOT of mental health professionals in my time).

Over this draining time of feeling more alone than ever, I've read a lot of articles about some of the problems with the diagnostic process - predominantly, the diagnostic guidelines were written about males with autism, so they don't take in to account the different presentation and difficulties of spectrum girls. Statistics of gender ratios are presented as 4-5:1 males:females, although it is unclear whether this disparity is due to actual gender differences or the difficulties in diagnosing girls. I've read that girls are less likely to be diagnosed with autism than boys unless they also have intellectual or behavioural problems even when their symptoms are equally severe, and girls with high-functioning ASD tend to be clinically identified later than boys, although I can't find any decent statistics on any differences in the average age of diagnosis. I've read hypotheses about boys being more likely to "act out" in a physical and verbal manner and therefore being taken for diagnosis at an early age, about the social structure surrounding girls creating an environment to learn the skills for mimicry rather than understanding social cues, about gender-based natural abilities for empathy and behavioural observation protecting girls from the most severe experiences of autism. Coming up to my 30s now, at the very least I can personally support the idea that the difficulties spectrum girls face are generally more invisible and misunderstood, and lead to young girls falling through the cracks of the support system meant to be there to help them. For all the time I spent in uni making friends with boys on the spectrum, because we just got along so surprisingly well, it never occurred to me that I might be on the spectrum too, because it's just not that common in girls, right? And my struggles are just a little different from these boys so wouldn't fit the same diagnostic criteria, right? There must just be something wrong with me, right?

It is important to talk about how the system is failing to properly pick up girls who need support, but I feel like in this discussion there is a whole section of life being ignored - that is, the rest of it.
Autism doesn't "appear" when one has a diagnosis, and it certainly doesn't go away because a person turns 18 and is no longer eligible for a lot of the essential government support. Autism isn't a disease invading a person's actual self that needs to have a cause found so it can be "cured", it's not separate from the person experiencing it. Autism is for life, and it is an integral part of how we develop and continue to grow for our entire life. Autism is a different way of perceiving and experiencing the world in every part of every day. Autism is the gap in understanding between where we are at any moment in time and where we want to be in society, the gap that grows for each passing year while we seem to drift further and further out of sync with those around us. A diagnosis of autism, whenever it comes, is like a confirmation that life will never stop being difficult, and if anything it is just going to get consistently harder and more confusing as the world becomes less forgiving of eccentricities that, once endearing and interestingly individual in youth, become unacceptable as an adult gets older.

In spending more time with neurodiverse adults over these months, I've seen different reactions and methods for coping with the growing burden of autism in adulthood. Some people adopt an attitude of separating themselves from their emotions, from connection and the people around them - essentially, they have to stop caring, because caring only leads to pain and wondering why the world keeps rejecting them. Some people funnel their pain into a passionate fire, and fight for their right to be different, constantly pushing the world to be accepting and accommodating to their different needs, until their shouting in to the void is ignored except for insensitive responses like "stop overreacting to everything". Some people resign to the passivity of people-pleasing and hope not to be stepped on too much along the way. And some people, like myself, lose the spirit and energy to keep trying to figure out where everything is going wrong and sink further into the depression and isolation of always being the wrong kind of different.

The other thing I found unusual about the report (which my GP was kind enough to send me a copy of since the psychologist seemed to think I didn't deserve one) was the criteria specified in terms of "needing support". Reaching adulthood without the necessary support during early life means we have had to develop our own way of coping with the world the hard way, so social training becomes less relevant, which seems to be the main "help" available. But these experiences learning the hard way leave their scars, and there doesn't seem to be any support available to heal them. I went through this process to find some way to feel better about myself and the future, and it seems like the only honest truth available is that things will never get easier. 

I'm going to get a PhD if it kills me... but will it?
sad
dolce_cantabile
Recently I've been quoting this song lyric by the Mountain Goats to my housemate, myself, and anyone else who will listen:
"I am going to make it through this year, if it kills me"

Now that I'm so close to the end of the year, and the end of my PhD thesis, I'm starting to wonder if it is actually going to kill me.

People say that a PhD is difficult, so I expected struggle. I didn't expect anyone to ever tell my that the amount I struggled was not normal, that it was because I probably have a ligitimate mental illness (I say probably because I am working through the system for my official paper-bound diagnosis). Furthermore, that it wasn't the reoccurring depression I and others thought it was, and that it is treatble but not by the methods already tried. Not easily, but treatable. I wasn't sure whether to feel relieved, frustrated, or upset that I couldn't have found this out over the last 17yrs of suffering mental health issues, over the last 10yrs of seeking help for mental health issues, or at the very least before I started the near-impossible venture of a PhD 4.5yrs ago.

Some days are better than others. I've gotten through most of the year struggling out of bed 4 days a week to go to work, battling through the tears to drive up to uni for fortnightly meetings, staring blankly at my laptop for hours tortured by the overwhelming feeling of emptiness and pointlessness while still managing to scrawl down one more paragraph for my thesis chapter. Unfortunately, the symptoms get a lot worse with increased stress, and the closer the looming deadling gets the higher the stress gets, and the less able I am to function in everyday life let alone finish the final steps of thesis editing. It's an exponential relationship, which at some point has to cross a threshold of "no longer able to cope with life, going to give up now", and I'm not sure whether I will actually reach the point of submission before crossing this threshold.

There are lots of good people in the world who want to help. My housemate is one of those amazing people. So is my manager, the staff welbeing coordinator, every councillor and psychologist I've ever spoken to, volunteers on mental health hotlines, and all of the friends I used to have. But wanting to help is not the same as knowing how to help, or being able to help. Because the only one who can help me is a properly trained psychiatrist, and I can't say spending years paying rent on a PhD scholarship has left me with copious amounts of funds to afford that kind of treatment. Not to mention how my housemate and I experienced first-hand in the last few weeks just how poorly equipt the public health care system is set up to deal with this sort of situation and get a referral to an adequately trained professional (and in the right area, at that). Now that I have my referral with adequate descriptions and an appointment with an adequately trained professional (or, at least one step closer to adequate), I'm afraid that maybe it's all too late - the 2 weeks between now and my appointment could be the difference between finishing my PhD and not, keeping my job and not, getting another job next year and not, continuing to live and not. I'm staring at my goals on the other side of a massive abyss, where all of the help and progress is on the other side, and I'm all alone on this side wondering how on earth I'm ever going to get across. How am I ever going to get through these two weeks, finish my thesis, go to work, negotiate my contract, apply for jobs, clean the house, cook my dinner, wash my clothes, wash myself, feed my cat, get out of bed every morning and get going with each day, without any of them being my last.

I'm sorry I don't have any answers. All I have is pain. 

On friends, happiness and some meanings of life
sleepy
dolce_cantabile
I was supposed to finish a thesis chapter 2 weeks ago and am meeting with my supervisors again tomorrow where I have to face up to their response to "I still haven't finished it". So, of course, I'm writing an LJ post instead... (ah, procrastination, my oldest friend and nemesis)


Someone once told me that happiness and meaning in life for them came from the friends they spend their time with. In some ways I could see their point of view, since many of the happiest times I've had have been while around good friends. There is no doubt in my mind that good friends can result in great happiness. My issue is that I have trouble keeping friends - being friendly and nice is not difficult to start with, forming surface friendships and occasionally finding something deeper with a select few who are willing to discuss more meaningful things with me. Some of these friends have been so close I never imagined a world without them, but sooner or later all of my friendships seem to fade away and I just lose contact with everyone. While other people seem to maintain confidence to keep calling friends, seem to have friends who still want to call them and invite them places and hang out with them, I inevitably lose all of these things with all of the non-related people I care about. I want to maintain friendships with many people, but don't even know where to start - it seems to be some magical secret that everyone else learned in primary school while I was busy playing by myself and with my imaginary friends.
Does this mean that I will never be able to maintain happiness or meaning in life, if I can't maintain friends?
And since friendships form from chance meetings, is happiness and meaning also chance-based?

Personally, I think a sense of meaning in life comes from emotion. Whether good or bad, having strong emotions makes me really feel life, really feel like I'm alive. For this reason, I can't stand people telling me to be less emotional, because they're essentially telling me to have less meaning in my life... One of the reasons I think people say having children brings more meaning to life is because it also brings more emotional extremes. Some people also find meaning in music or art, because it makes them feel new things. In this way, friends will also bring more meaning to life, because being around good friends will bring us more joy. New experiences, such as climbing a mountain or learning a new skill, may also bring meaning with new feelings.
If this is the case, then having a meaningful life should be as easy as finding things that bring us new and strong emotions, right?
In my experience of a vast abundance of sadness that has made me feel even more meaningless, I can't imagine it is that simple.

Another alternative is that meaning in life can come from doing meaningful things. It is well studied in social sciences that doing good for others makes us feel good and like we have more purpose in the world. According to a number of surveys, the most fulfilling jobs also appear to be the ones where one feels they are contributing "valuable" things to society (eg. research or life-saving work; although I disagree with common ideas of what work is considered "valuable", because many unappreciated jobs are extremely valuable in that the world would soon fall apart without them, like garbage collectors and janitors, but that's digressing from the main point). Of course, the degree of meaning derived from altruistic behaviour depends on your degree of empathy, to share in the happiness that your actions provide.

Feeling like we have a purpose doesn't just come from doing good things for others, but can also come from just accomplishing difficult things. Or creating new things that express ourselves.

Overall, I think everyone finds their own meaning in life, and we cannot expect someone else to give us that meaning.
Just like a person cannot be responsible for another's happiness.


And to end on a few interesting things I have heard:

The opposite of happiness is not sadness, but a lack of vitality.
The opposite of love is indifference.
The opposite of life is apathy. 

to settle down, or to keep fighting?
Kitten holding clarinet
dolce_cantabile

About 1.5 years ago, I entered into a relationship with a lovely person. Like most (all) of my previous boyfriends, he was kind, caring, considerate, intelligent, a little different to the usual, and sees things in the world that many people miss - all the things I initially look for in a potential partner. Our relationship went pretty well for almost a year, albeit with the usual minor issues. Then we hit the real rocky ground.

It wasn't sudden or easily recognisable, like running in to a cliff face; it was more like slowly drifting out to sea on a little dingy, not seeing any obvious problems but always having that nagging feeling something wasn't right, until one day you look around expecting to see land somewhere and realise you have no idea where you are or where you're going, and start to feel a little frightened and helpless while wondering how it got this far. Situations like this can be confusing, because he hadn't really changed, but perhaps I had changed and needed different things. The other confusing part was that I didn't really have any motivation to leave, because he was still a lovely person, I just didn't have any motivation to stay either. That was the key issue - lack of motivation and inspiration.

One of the key aspects of relationships is communication. So, we talked about all of these issues, and many more. After talking, and talking, and then talking some more, making some changes on both sides, I expected things to settle down a little... but nothing really changed, we just kept having the same conflicts and same problems. If anything, we started having more serious problems, and since this was happening at a time when our lives are relatively simple I wondered how our relationship would ever survive the inevitable future complications life tends to bring. We kept feeling distant and detached, like we were clinging so hard to the idea of a relationship that it wasn't really a relationship anymore. As I said before, I don't hate him; I enjoy being around him a great deal. But there is a hole in my soul that I long to fill, and the fact that it is still there tells me the relationship isn't going the way I expected or hoped.

So, do I leave? Do I hurt someone I care deeply about, for the potential to be happier with someone else? Do I give up the opportunity to make a comfortable enough life, perhaps lacking in the romantic passion I fantasised about in my younger days but happy enough all the same, and risk never finding a person who makes me feel completely whole?

Or Do I stay? Do I settle for a life of okay, a life that is better than being alone but always feeling like I wanted something more?

Perhaps it is cruel on the other person to stay for so long feeling so undecided, denying them the chance to move on and find their own potential soul-mate. I worry about that all the time, but find comfort knowing that we have talked through these issues together, and he chooses to stay knowing how I feel - it is his choice to make, if that is the life that makes him happy.

Like many things in my life, I don't know when is the time to keep persisting, and when is the time to give up and move on to something else.
So I keep persisting, hoping that some new revelation or experience will bring new light to make the decision and everything so much clearer...

I am not getting any younger, and have reached a stage of emotional maturity where I feel like it is time to make these decisions about my future - either I decide it's worth staying for the rest of my life, or decided we're not in it for the long haul and leave in search of something different. Procrastinating and hoping things will get better will not make the decision any easier.
It's just such a hard decision to make...


Perhaps it's not just a problem with my relationship, though.
Perhaps it's because i've lost my passion for life, my reason to get out of bed in the morning.


Those difficult questions
Kitten holding clarinet
dolce_cantabile
I was watching a Vlogbothers video today about making friends, and one of the things Hank mentions is that we need to have meaningful conversations with people, and to do that we need to spend time thinking about some difficult questions (which he then mentioned 4 of). So, in the interest of improving my conversations, relationships and hopefully myself, I'm going to think about those questions now:

1. What (or where) do you want to be in 5 years?
5 years is a long time, so I might need to work my way up to it...
In 1 year I hope to have finished my PhD, and soon to be finding out if it has been accepted. At the same time I'll be looking for a job, that may last at least 2-3 years or so.
One day I want to get married and have children, but before I ever got married I would have to be in a relationship for a minimum of 2 years (I refuse to get engaged after less than 18 months due to the potential persistence of neurohormones, and 6-12 months is a good amount of time to be engaged), and after getting married it would be a minimum of 1 year before having children (due to settling down and gestational period), so that's at least 3 years from now. I'm still not sure if I want to stay home to look after them, or work while my partner stays home, or (my preferred solution) work part time with a partner who works part time so we can alternate time spent at home looking after them.
So, I guess in my ideal situation, in 5 years I hope to have my PhD, be married and be working part-time while staying home part-time to look after a baby. And, the answer I give to every one of these questions, no matter what the timeframe, is that I want to be happy and content with my choices and life situation, whatever that turns out to be.
All the same, it's a strange and massive leap to think about in my current situation of not having any of the above mentioned things... and is 5 years really that long? To put it in perspective, 5 years ago I had just finished my 3rd year of uni and had more than enough credit to graduate from a Bachelor of Science (although the particular course I was doing meant that I couldn't graduate until I finished honours), and was starting my intermission year in which I got my first non-holiday job, went to Europe by myself, and looked after my sister full-time for 8 months (she was about 1.5yrs old). Since then, I've finished honours and a majority of my PhD time, although 5 years ago doesn't feel like it was really that long ago...
I hope 5 years in the future is not too close, though, because in 5 years I'll be in my 30s, and that's a scary thought.

2. What do you not like about yourself?
I don't even know where to begin... (a shorter list would be to ask what I do like about myself :P). I'll try to just keep to the top 5:
I don't like my temperament, how it changes so often and so quickly, and a lot of those times changes to something unpleasant.
I don't like being so insecure and constantly worrying about if people are mad at me, thinking they're avoiding me or that my friends don't want to be my friends anymore.
I don't like my laziness, my inability to get to work at a decent hour in the morning, and my constant procrastination from doing the things I should be doing.
I don't like my reliance on other people, and in many ways being so incapable of looking after myself.
I don't like the way I look. I guess I look like a normal human being, which isn't such a bad thing, but I just don't like looking at my own reflection.

3. What do you like most in the world?
I like having friends and family, special people who will always be there for us if we ask them to (really, asking is the hard part). I like that there are so many good people in the world, and even so many more average people in the world who have extraordinary goodness in them that will come out if they are prompted in the right way (ie. when someone needs their help). I like that a country of people can come together to help another race devastated by a natural disaster, that we have moral values to tell us what is right and wrong and ways to uphold those values in society. Maybe not so in all of the world, but I like living in a country that has freedom, choice and opportunity for all those who wish to seek it. To sum up, I like the hidden (and sometimes not so hidden) goodness inherent in most people.

4. What do you hate most in the world?
I hate how there is so much suffering and inequality in so many parts of the world, I hate how these parts of the world have been allowed to have evil leaders who have stayed in power and contributed to the suffering of their people partially because some people feel too helpless to do anything, and those who can do anything don't either out of a lack of caring, or because they are getting a better deal out of the situation, or because they "don't want to interfere" or don't think it's their place. Many things in the world could do with a lot more interfering...

relationships
sleepy
dolce_cantabile


relationships are interesting:
before you meet each other, you each have a whole life on your own full of so many things that make you happy. then when you meet each other, you have to try and fit your 2 individual lives in to 1 shared life, which depending on the degree of sharing is probably about 1.5 lives. some things fit together really well and make you both happy and feel like you "belong" together; other things clash and one or both may end up postponing, reducing, giving up or missing out on the things that make them happy, which may lead to some regret and resentment.
I always assumed that a successful relationship is one which has the maximum amount of fitting with the least amount of clashing. however, my current partner told me something he learned from his parents, that relationships are not about fitting together perfectly to start with, but the process of learning about each other and how to fit together. so, I guess a successful relationship needs the right balance between fitting together the things that are most important to each person, and compromising with the less important things to keep things interesting and make each person feel important and cared about.

 

just some thoughts...


mark date
Kitten holding clarinet
dolce_cantabile

date marked

:-)


ENFJ
sleepy
dolce_cantabile
I like how the scores and type change over time as a person changes; because it's nice to be reminded that change is possible...

ENFJ - "Persuader". Outstanding leader of groups. Can be aggressive at helping others to be the best that they can be. 2.5% of total population.
Take Free Jung Personality Test
Personality Test by SimilarMinds.com

(i dunno why the html code didn't include this part, so i'll just copy/paste instead)
Extroverted (E) 60% Introverted (I) 40%
Intuitive (N) 62.5% Sensing (S) 37.5%
Feeling (F) 59.46% Thinking (T) 40.54%
Judging (J) 68.57% Perceiving (P) 31.43%


ENFJ description:
outgoing, social, attention seeking, emotional, loving, organized, comfortable around others, involved, open, hyperactive, complimentary, punctual, considerate, altruistic, easily hurt, religious, neat, content, positive, affectionate, image conscious, good at getting people to have fun, easily excited, perfectionist, assertive, ambitious, leader, hard working, seductive, touchy, group oriented, anti-tattoos

favoured careers: casting directory, film critic, wedding planner, work in the performing arts, teacher (art, preschool, elementary), actor, fashion designer, news anchor, fashion merchandiser, school psychologist, broadcaster, stylist, interior designer, event coordinator, restaurant owner, childcare worker, hair stylist, film director, counselor, dancer
disfavoured careers: race car driver, scientist, computer specialist, airline pilot, computer programmer, financial manager, epidemiologist, truck driver, electrical engineer, software designer, web designer, business consultant, dj, bookseller

I'll stipulate that I consider most of the descriptive words as accurate to my self-perception (except for anti-tattoo; I've actually been thinking for a long time about getting a tattoo, but haven't decided yet on a design that will be meaningful for the rest of my life).
but, "disfavoured career: scientist"... what? whaaaat??? is it because they think scientists are all hermit introverts who spend all their time huddled alone at a desk? 'cause that's not what we do :P

all the good things
Kitten holding clarinet
dolce_cantabile
- managed to finish cleaning my house for house inspection (i didn't hear anything from them, so i assumed it passed...). and now I have a clean house :)
- got to return the cat that was fighting with my cat all the time (oh, lovely peace and quiet!)...
- seeing my friend again!! even though only for a short while
- some of my most interesting conversations seem to be over the internet, maybe they feel more comfortable sharing in that medium because i feel like i get to know them so much better...
- possibly repeating the previous one, but getting to know a whole new side of people
- being talked to when someone needs to talk. i dont know if i helped, i hope i did, because i like to help people when they need it :)

all the good things
Kitten holding clarinet
dolce_cantabile
Summary of the good things from the last week:

- a couple of days away with the department in Queenscliff, got a little time to wander around the town (which I had never seen before), and had a really interesting saturday night watching other people get quit smashed... although, at times it was hard to relax since I had a progress report looming near the end of the retreat...
- progress report went really well! I even got a compliment on my research from the soon-to-be head of department, and one of her students said mine was the best presentation he saw over the 2 days! all that worry and stress, and it turned out fine in the end... :P was also nice to have caring friends who give pep talks before a presentation
- love Darkzone! especially with awesome friends. especially when my team wins :)
- Pancake Parlour with friends :)
- lovely cuddles with friends :)
- productive shopping trips are always fun :)
- spent a really nice majority of weekend at my dad's house (partly for his bday); had fun chatting with one sister and teaching the other to play chess, cuddling up to my dad, and making pancakes for breakfast when everyone else was still sleeping in :P
- chatting to friends online is always nice, especially friends on the other side of the world. it's also nice to get random messages from friends, to have friends who want to help when they can, and especially ones I can call when I need to talk about something.
- feel very accomplished mowing my own lawn all by myself, with a mechanical push mower (don't laugh, they're surprisingly effective and not nearly as difficult as one might think!)

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