ASD diagnosis story

‘Aspergers From The Inside’ featured a piece I wrote about my Autism Spectrum Disorder diagnosis here.

Thanks for allowing me the opportunity to share my diagnosis story, Paul.
I love your work; I find immense value in what you do 

Rest In Peace, ‘Vyrus Vallentine’

~ “i’ve been land-borne for far too long now
my heart and head lie solely in the clouds
i’ve dealt with the stagnation, the oppression of this land
oh lord, how i’d love to break free.
the heavens lay, calling me, calling me, calling me
so close i could touch the gods
the conditions could be better, i suppose
but fuck if i’m not giving it my all.
coasting on the warm current’s air
the pressure should’ve killed my by now
i wasn’t blessed with wings in this life
but fuck if i’m not gonna fly.
naysayers and cynics, they try to cut me down
but they won’t end me here, no, they can’t end me here
i’m the biggest fuckin’ fish in this shitty little pond
i’ve got so much more to live for, i was born to fly” ~

In October of 2016, I said goodbye to the life of the first guy I truly, madly, deeply loved.
He grew a brain tumour that eventually stopped his heart and he joined the club of 27s.
We’d bid each other adieu years before that, though.

We had a couple of extraordinarily concentrated months together in the winter of 2010. We didn’t always agree on things or share the same view. We didn’t always get along. We hated but we loved, immensely. Sometimes both at the same time, if that’s possible.

We were passionate, we were fiery, we were cool, occasionally calm, sometimes loud. Mostly stoned. High on love and life and each other; at least I was.
We were poetic. 
We were clichéd. We were in love.

You helped open my eyes. You taught me a lot about some of the ways the world works. You showed me a grim side to the way that things can be and are. I looked up to you. You were interesting. You were intriguing. You were dark, yet sweet. You were very charming. I thought you were incredibly smart and terribly talented.
I will forever treasure the song you recorded for me. That ‘Two Piece Jigsaw’ recording of 
Elevator Angel was one of the nicest things that anybody has ever given me. Boy, you made me want to feel things I’d never felt before.
You can be my angel now.
I tried to be yours, Matt, I really did.

Thank you for introducing me to some truly extraordinary music. My auditory system and soul is forever bettered for your recommendations and iTunes hijacking; “I can’t believe you don’t know this” and “you have to hear this song!”

I’m so sorry that it ended on bad terms. I know I said and did some things that were wrong. I was wrong. I was stupid. I was naïve. I was immature. I was drunk. I was mentally unstable. I was confused and conflicted. I was hurt. I was scared.

I should have known better, said better, done better, been better. I couldn’t. I tried. I really wish I would have made that clearer to you, when it became clear to me. I still had so much to learn, even now. Forever learning.
I’m sorry that I didn’t let you teach me what you had to share.

I wanted to forgive you but I was hurt. Fear, pride and ego got in the way of love, in the way of truth. My truth was twisted, influenced by pain. So was yours. We were both scarred by previous experiences. You ripped the stitches off my old wounds and poured an ocean’s worth of sodium in. I understand. My intention was mostly positive. I tried. I was just trying to protect and connect. Maybe you were too, the best way you knew how.
I can finally forgive you, now. I’m sorry that it took me this long. I’m glad I got here; better late than never. Forgiveness is an extremely important factor in my ultimate goal of serenity.

I’m sorry that I wasn’t enough for you, then. I wished I was. I did my best. I think we both did. I wish it could have been different. I wish that things could have been resolved in some way. I’m so glad to hear that you said you felt okay towards me, towards your end.

I thought I could spend the rest of my life with you. I wanted to; wanted to live with you, love with you, be with you forever.
I had so much hope for our amazing future.

I know that we hung out a few years later, at your place. We watched ‘Being John Malkovich.’ I don’t remember the evening very well. I had a foggy brain altered by chemicals. We both did. I do recall you telling me that you should never have left. It made me feel good that you saw my value once more. I had a glimmer of hope. I told you that I agreed with you; that you had made a mistake. I was glad you’d realised it. I think you wanted to give it another chance; you made a move to try.
I saw your struggle. I was there too, only further away. You were even closer. I wanted to help you but I had to walk away. I couldn’t let you in again.

I absolutely hated you when we spoke after our break up. I’d never felt fury like that before. I was totally blind with rage. You told me terribly painful things about myself that I didn’t want to be true. I didn’t want to hear them. I wasn’t ready. I was angry. I’m ready now. I’m not as angry anymore.

The funeral photo montage was great. It made me realise that I would have loved you if I’d met you at 10, 12, 15 years old. We would have appreciated Eminem together. You were my favourite type of person, then. I wished I’d known you sooner.

I saw you in each of the people I recognised at the service. All of the years of your life reflected in those you left behind after having had an effect on theirs. They loved you. I know why because so did I.
Infinitely squared.

You twist, I turn, we twine. Divine. So fine. All mine.

Rest easy, Matt.

Love, peace and eternal gratitude for the life lessons.

Previously yours,
Maggie x

Touch one

Touch one

Touch one

Touch one

Image035

Picture 1
(Photo taken by Natasha Castro)

20180303_011526

 💓

Coming out about Autism on Facebook

13 September 2016

As many of you are probably aware, I have spent most of my life dealing with a range of mental health issues. My experience with these have included seeing countless professionals, umpteen different medications and therapies, at times lifesaving hospitalizations and a course of ECT.
I am now in a place where I have learnt how to manage different symptoms that present, the occurrence of which has drastically, dramatically lessened in frequency and extremity as I have gained knowledge, tools and skills. While the 10 or so different diagnoses I’ve received over the years have indeed been valid and descriptive of what I was experiencing at the time, I always felt that there was more to it. More than being mostly introverted. More than being anxious. More than being highly sensitive.
This led me to start researching different things and earlier last year I started looking into a particular condition comprehensively. I’ve been through a lengthy assessment process with two different professionals since late last year and in August of 2016 emerged with the formal diagnosis of Autism Spectrum Disorder, formally known as Asperger Syndrome.
When I initially suspected that this neurological difference may be the case in March of 2015, I was quite shocked. I thought I knew a lot about ASD, (it’d always been an area of interest for me) but the more I read about it and in particular heard other people’s detailed subjective experiences, the more it started not only to fit, but feel oh so familiar. It provides an explanation for so many of the things I’ve never really understood about myself, some of the things I experience in life and areas where I struggle.
One of the reasons it was never picked up until now is because of the way it presents and manifests in females; generally we do a bit better socially and it seems to be more common in males. Often girls and women on the spectrum are diagnosed later in life (sometimes after having a child that they discover is on the spectrum), misdiagnosed as having different mental illnesses (although there are definitely comorbidities in both sexes) or remain undiagnosed altogether.
Receiving this diagnosis has provided me with immense relief and a reason WHY (one of my favourite things!); an answer, the missing piece to my puzzle that I could never quite find in other areas of my search over the years. It’s also allowed me to give myself permission to accept, understand and forgive myself for a lot of things that have happened in my life as a direct result of ASD and my inability to cope effectively with certain things.

I ran a rough draft of this through a couple of close people in my life to see what they thought and a couple of things stood out to them. The first question I was asked is: what am I going do with this information now that I know I’m autistic/how is it going to change my life? The simple answer at this point in time is that I don’t really know. I’m still processing what it means to me and the effect it has on my everyday life. I’ve been taking the time to figure out how to move forward with this in mind. I have spent a lot of time over the years feeling stuck, feeling unsure of what the next step to take is, unsure of what to do with myself and this is no different. I get overwhelmed by possibility, choice and options. Paralysis by analysis. It’s not as bad as it used to be but it still pops up at times.
The next question I was asked is: why do I want to share this and what do I hope to achieve? There are a couple of answers to that. One reason I am posting this status and coming out about this so openly and publicly is to share this piece of information about me with the hope of providing the people in my life an explanation for some of my behaviours and intrinsic ways of being. Another is with the hope of raising awareness of ASD and subsequent mental health issues/challenges.
If you have gone through life feeling as though you are different, have had trouble feeling like you belong, experience life through different lenses and struggle with some things most people seem to have no problem with, I would love to have a discussion / provide further resources. Most people seem to have an idea of what ASD entails but if you envision a small boy obsessed with his train set, well, I’m happy to dispel any myths 

If you have any questions or comments I would be interested in being of service where I can/answering questions or hearing any comments, positive or negative.
A massive thanks to my parents, Helen, Graeme and my best friends, Annie and Amber. Thank you all for putting up with my (sometimes incessant) perseveration on this topic, indulging me while I send you much information and taking the time to complete quizzes for comparison. Your unconditional love and support has helped get me through those many dark times and helped make me the person I am today.
I also wanted to extend a huge wave of gratitude to two other autistic females that I have contact with mainly online, Vanessa and Lena. Your wisdom, experience and insights have been priceless.

Thank you for taking the time to read this if you did  

My Facebook profile

My favourite (mostly female) ASD resources

Websites/blogs/articles:

Female ASD Traits – Tony Attwood

Female ASD Traits – Rudy Simone

Female ASD traits – Tania A. Marshall

10 Ways I Can Spot An Aspie Girl – Samantha Craft

Bipolar or Aspergers? – Samantha Craft

Non-Official Checklist – Samantha Craft

Ten Traits – Samantha Craft

Myths About Female ASD – Samantha Craft

The Pattern of Abilities and Development of Girls with Asperger’s Syndrome – Tony Attwood

The Borderline of Aspergers, Similarities and Differences – Hannah Belcher

The Borderline of Aspergers revisited – Hannah Belcher

Aspergers in Women – Life On The Spectrum

Think You Might Have Aspergers Syndrome? – Life On The Spectrum

The Triad of Impairments – Life On The Spectrum

Realistic Symptoms – Life On The Spectrum

Essential Reading – Cynthia Kim

Aspergers From The Inside – Paul Micallef

Books:

The Complete Guide to Asperger’s Syndrome – Tony Attwood

Aspergirls – Rudy Simone

Nerdy, Shy and Socially Inappropriate – Cynthia Kim

I Think I Might Be Autistic – Cynthia Kim

Pretending to be Normal – Liane Holliday Willey

Safety Skills for Asperger Women – Liane Holliday Willey

Everyday Aspergers – Samantha Craft

Freaks, Geeks and Asperger Syndrome – Luke Jackson

Sex, Drugs Asperger’s Syndrome – Luke Jackson

NeuroTribes – Steve Silberman

Quizzes:

The Aspie Quiz

Autism Quotient

Empathy Quotient

Empathising-Systemising Test

RAADS-R

ADHD
ADHD is different in women

Dyslexia About
Dyslexia Test

Dyspraxia

Executive Dysfunction

Random depresso poem 2006

the sadness took over her body like anesthetic
her arms became limp, she wept
single raindrops fell from her eyes
down her cheeks they crept
suffocation and pain putting her in agony
and the world just slept

Saturday night 2006

Saturday night

Tea time, 6.30
Home from Dad’s
Came home in my pyjamas
Ran the water hot
Got in and washed my hair
Half an hour I emerge
Get into clean night clothes
Towelling my hair dry
Jumping into the computer chair
Log in to MSN
Open up Myspace
Haven’t had a visit to this addicting site
For twenty four hours
You Have New Comments!
You have New Picture Comments!
Ooh, the excitement.
I feel so down.
Is this the way my life is going to be?
Resorting to the computer
A box on a table
To feel happy when someone says something nice
About a picture of me
A picture that hardly even looks like me
People I don’t even know comment it
Wanting a nice comment on theirs in return
Oh, the unwritten rules of Myspace
I spend hours upon hours
Wanting my profile to look nice
Why?
Do I really have nothing better to do?
I do write though
Which is good
I am free to be myself
But who the hell am I?
Act a certain way and people tend to like you
Look the wrong way and you are ignored
I see a lot of these people
When I visit the city
The ones that don’t leave the seats
Of Flinders St Station
I’ve met them through Myspace

 

 

© Maggie O’Connor 2006

Maggie’s Verse Novel 2006

Maggie’s verse novel.
Well,
If you can call it that.

Title page and stuff

Author profile

Blurb

My Name
My Family
Mother, father children
Family
Nanna

My house
My room

Friends
Best friends

Love

Confessions

Don’t believe

The photo

The real me
Recipe
Yes
Learning
Blah blah blah
Writing

The future

Author Profile

Maggie O’Connor has been writing stories since she was six years old and decided that she was going to become a writer at age ten.
A fanatic read of all sorts, she devours books, getting completely lost in them.
Maggie likes writing best very late at night and usually finds it hard to sleep with all the thoughts clouding her head.
Besides writing, Maggie enjoys listening and talking to people and learning new things that could be useful when writing and in life. She also likes MySpace way too much.
Maggie completed her VCE and is currently living in a small house with her best friend, *****, of eight years, and their two cats, Trixie and Treacle.
Maggie is doing youth work and some stuff with Reach, working with kids on the street, kids with drug problems and abuse. She loves helping them, saying they really are awesome with the stuff they have been through and most are wanting to get help. She finds it very rewarding. Maggie takes the feeling she gets out of it and uses it to help her write. Sometimes, when she wants to write peacefully, Maggie will jump on a train and travel two hours to wherever and back again, her laptop on her knees, just writing about the people surrounding her.

Blurb

What am I supposed to write in a blurb?
How to sum up these pieces of writing in a paragraph?
I don’t know.
You’ll interpret it the way you do.
How is it my right to tell you the right way?
My way may not be the right way.
Most definitely won’t be the right way.
You think your way is the right way
And that’s okay.
The way I felt writing it, will most likely
Be different to the one you get reading it
Well, I hope you find some sort of…
entertainment,
in it.
I found it amusing to write
I haven’t really written in a long time
And this has opened my eyes up
Being given an assignment
A time limit
To come up with something
I’d sit in bed
Late at night
writing pieces of this
I guess I’ve
found it satisfying.
I hope you enjoy reading it
As much as I enjoyed writing it.

My name

Maggie.
Sure, call me Maggs, Maggagy, Maggles.
I have enough nicknames already
Maggie
The name of a flower my Nanna bought
I have multiplied and planted myself throughout her garden
Maggie,
Not Margaret
Please refrain from asking
Maggie
After a song my mum loved
Still does
If my gender were different
I wouldn’t have been
Maggie Patricia
I would have been named
Sean Patrick

My Family

Mother, father, children
He never wanted kids, thought they were puking, pooing, smelly brats
Screaming in shopping centres, uncooperative, selfish
He wanted a life of freedom, she one of peace
I was created in her
Three months into their relationship
A mistake
The best mistake of their lives
He reminds me to this day
Seven years of age between the couple
He still young
Still wanting to be
Me at their wedding, eighteen months alive
I’ve seen the video
They ended life as one when I was at the tender age
Of six
Brother James, three
Dad lives in the next suburb
A place we visit on weekends
We introduced a new member to our family
Of three
Three years ago
She sits at the end of my bed as I scribble
Licking her back.
What are we to her?
A source of food and wine?
Well, take out wine
Replace with warmth
I think not
We’re more to her
Than that.

Family

What defines a family anyway?
Is it the people that know you best?
People that know when you’re in a bad mood?
Understand you can’t be affectionate?
Do you need a reason?
Are family who you turn to for support?
Or where you go when nothing is holding together?
Is it family’s arms that keep you safe?
That help you feel loved?
That understand if you can’t talk about it
And are just willing to sit there in silence
To be with you?
Are family who you can take your anger out on?
Kick and scream at them
And they just stand there and take it
Because they know you need to let it out?
Do family hurt themselves to keep you happy, secure, sane?
Whatever.
What defines a family?
You tell me

Nanna

I don’t know where to start.
There are so many things I want to write
And I know I won’t be able to express it the way I want to
I never can.
Four times a year, for two or three days at a time
I’d sleep at her house
Forty five minutes away
We stayed up until one in the morning
It was late for me
At age eight
Describing everything we would purchase
If given a million dollars
Then we’d jump in the car
Going shopping the next day
Our special seat in Forest Hill shopping centre
A brown bench
Eating potato cakes and banana Big M’s
We’d watch our surroundings change over the years
But the bench stayed
Murals were painted around
Shops opened, shops closed
The bench stayed
Our bench never left us
She’d buy me books, read them to me one after another
We used to have tea parties with a small pink set
At age four.
Dad would travel with us
For Boxing Day
I remember those car rides
The four of us
A happy family
Talking, singing, laughing
Mum driving
Dad wanting to
Presents at Nanna’s
Lots of books
A skipping rope twice
CD’s as I got older, still books
The car ride home, Mum stopping at Safeway
Buying the reduced plum pudding
For next Christmas
Packing up the year into our car
And driving home
Ready for next Boxing Day
Nanna always making her famous
Chocolate, banana, carrot
Cake for my birthday
The number of candles grew
The cake stayed the same size
Nanna could talk herself to death
Sometimes I tune out
But I still listen
Not to the words
But her voice
So many memories lie in it
She calls me now
Talking to me about school, friends, life in general
For an hour she talks
And I listen

My house

One day, a carpet designer went out for lunch
He had a nice bowl of chickpeas
Chocolate for dessert
Later he felt ill
Upchucked his lunch
Looked at it and thought,
Ahh, I’ve been looking
For a new colour
His spew is what the toes in my house are warmed by
When we were renovating
Six years ago, I walked into our hallway
Where there was a rather large hole in the floor
And a kitty cat poked his head up
Perhaps it was a dream
Except I remember it clearly
Walk into the bathroom right now
You will see the shower door
Ajar
My own kitty cat likes to drink the water.
The toilet, with its door bright red
The only locking one within our walls
Walls lined with sayings, words, phrases
Reminding us we are loved, can do good in this world, there is hope
Words I see everyday
Imprinted in my head forever
Yet have lost all meaning.

My room

My room is a space in which I sleep
In which I write
In which I think
A space I am allowed to just be.
It is the room that has belonged to me
For eleven years.
Eleven years of space that’s mine
It expires in around four
Do I bother changing it to suit the me
Who is changing, learning, growing up
More and more everyday?
It was the room I loved last year
The colours, the furniture, the feel
Now all I want is something new
I want new memories
I want photos on the walls displaying these
Photos that capture us
My friends, my family, me
Just as we are right now
Not clutter from the past eleven years

Friends

Best friends
I’m not one to chop and change my best friends
On a daily basis
Steph has and always will be
One of my best friends
That doesn’t mean I can’t have others
***** was my best friend for nine years
Now we barely speak
Sleepovers, movies, shopping, memories we had together
Long gone, doubtful to be mentioned again
****** has been my best friend for a year
New memories are forming with her
We are planning the house we will move into
After school
She being a famous model, in a band
Me a writer
And loving it
We’ve designed the carpeting, the walls
Our huge cabinet filled with alcohol
A computer each, our cats
What we’ll do on the weekends, where we’ll travel
I hope it all works out
For I did a similar thing with *****
Except ***** is a lot different to her
I think it will all work out
I know it will

Love

A word I don’t use often
The words “I love you” haven’t made an exit from my mouth
For as long as I can remember
To family, friends, nobody
I can’t say it
And I don’t know why
I want to
Quite often really
It’s come from other people’s mouths
To my ears
And I return it with a smile and a thankyou
I don’t know who or what I love
I know what I’m supposed to
I know what others love
I don’t know the feeling of love properly
Never been in love
Doubtful to happen
It’s not something I dwell on
I’ve accepted it and now its time
To get over it

Confessions

I have Obsessive Compulsive Disorder (OCD)
It makes me do weird things
I am seeing a counsellor
Every Tuesday
We talk about stuff
I am afraid of spontaneity
It gives me anxiety
Quite a darn few things do
I don’t like to hurt people
And if I do I feel bad for ages afterward
I can’t express myself in words properly
I don’t think I’m worth it,
But I absolutely loathe it when anyone copies me
I am very paranoid
If people are laughing
And I don’t know why
I always assume it’s at me
I find it hard to get out of bed in the morning
Nothing really seems to excite me anymore
It’s all so boringly repetitive
I want to do new things, go new places, learn new things
I don’t know who I am.

Don’t believe

Don’t believe teachers who read your work and give you a grade without telling you why you got that.
They just can’t be bothered.
Don’t believe anyone with a rat tail.
Having one should be illegal.
Don’t believe in religion.
Why should there someone or something that controls you?
Or from whom you beg forgiveness and pray to make yourself feel
Like a better person
Don’t believe anyone with a skirt so short it could be a belt.
Self-respect goes a long way.
Don’t believe anyone that says “fully sick” and means it.
They suck.
Don’t believe anyone whose favourite movie is High School Musical.
Four million dollars worth of crap, they can’t appreciate good movies
Children in Ethiopia, no one thought about them did they?
Don’t believe people when they say you’ll be friends forever.
You won’t.
Don’t believe people when they say you’re important to them.
You’re not.
Don’t believe anyone that says you mean everything to them
You mean nothing.
Don’t believe anyone who says they understand.
They don’t.
Don’t believe anyone that says they can fix you
They can’t.

The photo

I know this is supposed to provoke us
To get off our arses
And get the family photo albums out
Search through the glossy pages
For that outstanding picture
The moment that was screaming out to be captured
Two, six, ten years ago
I don’t want to write about one
Specific photo
As there are too many photos
I like
I can’t pick one
I don’t want to
There are millions of photographs
In this world
Millions of moments
Millions of memories
Sitting on coffee tables, on walls, in wallets
Each meaning something different
I love that idea
All those photos
All those moments
All those memories

The real me

I find this rather difficult
I could ramble on about my likes and dislikes
But honestly, they’re not really important.
Nor interesting.
They hardly tell you who I am.
I don’t even know who I am.
I know I’m scared a lot of the time.
I have a lot of insecurities
I’m shy.
I love meeting new people
If anyone gives me a chance
I could sit in my room on my bed
For hours on end
Just thinking
I don’t think I’m interesting.
I don’t think anyone would want to know me.
Know about me.
If I’m not interesting, this is going to be boring.
I hate telling people secrets
Because then you are naked
And can’t hide behind anything
If it’s all out in the open
I hate to talk about how I feel
It’s too hard
I like to help other people
I complain a lot
Okay, I’m rambling
Not going anywhere interesting.

I’ll give you the recipe (as best I can) for a Maggie
A cup of shyness
A pinch of jealousy
A sprinkling of creativity
A tablespoon of interest
A dash of courage
A smidge of earnest
A teaspoon of boredom
A shake of smiles
A cup of curiosity
A splash of ambition

Yes

Yes I chew my fingers
Yes I’ve been to hospital
More times than I can count
Well, not on both hands and feet anyway
Yes I’ve had several operations
Yes I hate the way I look
Yes I love taking photos
Yes I’ve changed
Yes I change
And yes I’m comfortable with that

Learning

I’ve learnt people change around different people
I’ve learnt ninety five per cent of this world are fake
I’ve learnt it’s hard to tell who
I’ve learnt not to trust anyone
Because everything you reveal
Ends up being used against you
Thrown back in your face
I’ve learnt not to rely on anyone
I’ve learnt to stick with what you believe in
Stick to your values
Never change for anybody except yourself
I’ve learnt you don’t need anyone else
Except your cat
Because she can’t judge you
She doesn’t hate you
She doesn’t leave you
I seem to learn new things every day
Good and bad
I suppose that’s what helps you to grow
Actually, I don’t suppose,
I know
You need to learn
To grow

Writing

Writing is preferred doing when inspiration hits
Not being handed paper,
Given thirty minutes
And told to write a story
Writing is the taste of Just Right after All Saints
Writing is sitting on a tram alone
Making up the lives of strangers around
Writing is curiosity
Wanting more knowledge
Facts, fiction
Researching things that interest me
Writing is a punch in the face
Waking me up at four in the morning
Writing is my dream life
Writing is my nightmare life
Writing is a pen and paper
Beside my bed
Writing is reading
Writing is sitting on the beach and describing the feeling
Writing is perfection
Writing makes me smile
Writing is best with rain
Splattering the windows
Writing is best done in the dim light,
Feeling cold
Feeling alone
Writing is quiet
Trying not to wake the house up
Typing silently
Given up on the pen
Let your fingers talk
The ink can’t keep up
Writing is a cleanse of the soul
Writing is independence
Writing is jealousy
Writing is procrastination
Writing is freedom

The future

What do I want?
What I want now
May differ from that in
Two, five, ten, fifty years time
Does this poem have to be about the near future?
What I want to do in five minutes?
Or is it more of a question of life
In the distant future?
I guess it’s all about interpretation
Most things are
Well, I want to be a writer
Writing is my passion
It’s what I look forward to doing
It’s what I want to do in my life
I don’t know if I could make money off it
But that doesn’t matter.
I don’t care about fancy cars
Having lots of clothes and possessions
I don’t value that kind of thing
Materialism
I just guess I want to be happy
And when I am writing
That’s the feeling I get.
So I guess I relate writing to happiness.
That’s what I want.

The end.

 

© Maggie O’Connor 2006