Tuesday, 1 April 2014

Asperger's Sisterhood retreat.



On March 29, 2014 I, and two other lovely Aspie women (A and W) friends drove from the Sunshine Coast down to Manly, Brisbane. We drove into a drive way with a quaint looking building. It was held at the Presentation Spirituality Centre. The building had a lot of history to it which really appealed to me. I like buildings with history, they have a story to tell.


I wore my ‘Ask me about neurodiversity, it’s my special interest’ tshirt because I thought it was appropriate for the day. It turned out to be a great conversation starter. I am glad I wore it.
We got a photo of the three of us in front of the building before we went in.





We went into the presentation room and met R (the presenter), her husband and son. We were the first to arrive at just on 9am. I was so excited!!

We shook hands with R and her husband and did the general introductions and greetings.

I was excitedly nervous, like so excited that I could barely contain myself. I felt flappy but did not flap. I wanted to but didn’t know how it would be perceived by others. Ha ha! The irony. I realise I self-censor my stims a lot and that I do not have quiet hands, I have loud hands. I was very much looking forward to meeting the other Asperwomen who were coming along and interacting with them.

One by one the other women arrived. A, W and myself chatting happily amongst ourselves in the very comfortable padded chairs with armrests! They were awesome chairs. I took note of what each woman looked like and what they were wearing. I noted we all looked different but we shared a common neurology. I knew overall looks would not even matter at all and they didn’t. I of course cannot help but notice people’s appearances and clothes but do not judge. It’s a pattern noticing exercise for me, really. Nothing more.

We were all a bit shy around each other at first and did not get a chance to really talk much as R wanted to start the program. So we focused on the introduction which was several minutes. Then came the morning tea break and that was when I started talking to some of the other women. I was so excited I felt like I was going to explode. I could barely contain myself. I felt like an excited puppy and it showed!! Ha ha!


I met a woman at the morning tea break who was wearing a Neurodiversity tshirt which is from last years ASAN (Autistic self-advocacy society) for Autism Acceptance Month (April, 2013). We saw each other’s shirts and instantly connected in conversation. It was awesome. We realised we both liked Brene Brown which was another connection. Very cool. We were both really excited about that!


R called us back to continue the rest of the program. She told us about a woman called Caryll Houselander, who upon reading about her life and writings, Rachael had come to the conclusion that she was an undiagnosed historical Asperwoman. We sat enthralled listening to Caryl’s story and how she struggled to fit in and knew from a young age that she was different. Rachael shared some of Caryl’s quotes which were truly profound and insightful to the intense internal struggle that Caryl faced everyday. She overcame those struggles and forced herself to interact with people. From Wikipedia ‘During the Second World War, doctors began sending patients to Houselander for counselling and therapy. Even though she lacked formal education in this area, she seemed to have a natural empathy for people in mental anguish and the talent for helping them to rebuild their world. A visitor once found her alone on the floor, apparently in great pain, which she attributed to her willingness to take on herself a great trial and temptation that was overwhelming another person.’ Rachael shared how amazing it was that she had worked hard to work with people and help them even though she had no formal training. She was well known in her area as having a gift of being able to help others and help them re-build their lives.


R handed out questions on little pieces of cardboard with different quotes that Caryl had written about different aspects of her life. We separated into groups of three to discuss the question and share our answers. I did not go with the women who I came with. I wanted to meet and interact with some of the other women. I went with two other women who were sitting near me. K and L. Our question was ‘How has your difference brought joy to others?’


Two of us shared our experiences with how validating our diagnosis was and what that meant. It was amazing to hear a similar story from a another Aspie woman of how amazing diagnosis was for us.

I shared about how I advocate openly on FB and in everyday life and have a good little community of people following me online, who find my insights fascinating and helpful. I shared that I had been told a few times by online Aspie friends and even one NT friend how much they appreciated what I do by sharing my insights.

The other two in our little group seemed quite interested in my little story. I over-shared and talked too long so one woman missed out on sharing her story, unfortunately. I felt a bit bad about that. I struggle to know when to stop and how to summarise.

We got an opportunity to share with the rest of the group what each little group had discovered in our discussions. It was quite insightful and interesting hearing each group share a little of their insights. I cannot remember everything that was shared but I know I found it insightful and helpful to hear from other Asperwomen and their stories.

I chose not to share my story and what our group had shared as I felt I had already talked a bit too much so I did not, even though I wanted to. I never know if I am taking over and sharing too much, so chose not to share.

R talked about mindfulness and meditation - benefits. We did three short mindfulness and meditation exercises which were 3, 5 and 3 minutes each. Then we gave her feedback. I learnt a new technique for meditation - repeating a short phrase, in this case ‘All shall be well’ over and over to myself and focusing on my breath. I found speaking the phrase quietly to myself helped me focus and get into a meditative state easier. I have had previous experience with mindfulness and meditation which made it easier for me to do.

Then it was time for lunch. I started chatting to a few of the other women there. It was so awesome to chat with women who have been through similar struggles. I got so caught up talking that I almost forgot to eat. It was very exciting for me. I have never been in a room of so many Asperwomen at the same time. I clicked with all the women I chatted to. It was such a wonderful experience for me. I have never experienced that before.


I wanted to chat to EVERYONE! I was intensely excited and happy to be in a roomful of Asperwomen. I was a bit shy at first, but soon got over that. Unfortunately I did not get a chance to chat to all of the amazing women there. I really wanted to but it was just too hard to get around to talk to everyone. There was just not enough time and I did not have energy to do so. At the end someone suggested we all connect online and start a google or yahoo group. Which we are going to do. I am looking forward to this.


After lots of talking (which was tiring, but good), it was time for the afternoon session. The afternoon session consisted of R sharing a diagram about the different layers of who we are and how our true self is hidden under layers of other things that get in the way of learning who we are. It was interesting and helpful. She talked about how we need to uncover those layers through meditation and discover our true self.


Then we had a longer meditation session. This one went for 10 minutes where we once again repeated ‘All shall be well’ over and over, focusing on breathing. It was very relaxing, calming and centring for me. I did not think I would be able to do 10 minutes of meditation as I do struggle to sit still at times (especially when I am excited) but I managed it quite well.


We did this candle lighting ceremony to symbolise our sisterhood and the beautiful day we had had together. Each of us lit a small tealight candle using a long thin candle from a bigger candle. it was a beautiful set up with a rainbow chiffon scarf draped over a little table. It was so relaxing to watch the gorgeous scarf blowing in the refreshing ocean breeze. It was a visual stim for me. I took photos and a short video of the ceremony. beautiful calming music. It was to symbolise our sisterhood and how our neurology connected and united us. A very beautiful ceremony.




Then we took a group photo so we can remember each other and the day. Someone asked if everyone was ok to keep in contact with each other. R made an announcement to see if everyone was ok with connecting in some way via email or some type of group. Yes! They were! I am looking forward to connecting with the other amazing women that were there.




Afterwards I chatted to a number of lovely women - K, R, M, C, L, F and others. I have unfortunately forgotten some of their names but it was amazing being able to chat to each one. We added each other on FB and exchanged email addresses. I am looking forward to connecting and chatting more with these amazing women. I feel so blessed to able to have an opportunity to meet so many Asperwomen all at once in real life, not just online. I was almost the last to leave, I was having such a great time. I was sad that it had ended but all good things do have to come to an end.

It was funny, afterwards on the trip home. A and W told me about how I politely pushed R out of the way to get a photo of the lit candles. Apparently R was adjusting herself getting ready for a photo which I did not notice at all. I was so hyper-focused on taking a photos of the candles that I did not notice R getting ready for a photo. Ha ha! I was a little embarrassed and felt like I had been rude (definitely did not mean to be), but soon realised that we are all Aspie so would understand our social stuff ups. I definitely cringed inwardly a little when A and W told me what I did. They were laughing with me because really it is funny!

R shared a little of her own struggles of being an Asperwoman which I very much appreciated. She explained that years ago she would have freaked out over the slide show and remote not working (it had a few moments of not working) but now she is able to keep calm and move forward. I would have loved to hear a bit more about her own journey and understanding of self. Perhaps another time?

I also would have liked to have more group talking time to share our struggles, successes and really connect as a group of Asperwoman. I strongly believe that Asperwoman can and should mentor each other as we can all learn off each other. Perhaps next time?


Further reading:

Mindfulness changes the brain

Mindful and Asperger’s

Caryll Houselander

Caryll Houselander’s books


For the women who attended the AS retreat and who are reading this, if you wish to contact me (so we can create some form of online group) please email me here. Looking forward to re-connecting with you all again.

Sunday, 23 March 2014

My thoughts about the 'cure' view.

I did a bit of advocacy in a mostly NT group for a friend last night. It went well, I think. She was upset about people telling her that they wanted ASD cured. She posted in the group that she did not want to be cured and others did not understand why she would not want a cure. I helped her out by sharing a few thoughts. 

My response was inspired by this brilliant post shared on the Diary of a Mom Facebook page. Her description of Autism being a pervasive condition is brilliant. 

I read this brilliant blog post a bit later on about the positives of being Autistic which helped me form my view and words for my response to my Autistic friend's frustration and pain at being misunderstood in an NT group.

Here is my response.


I'm autistic and don't want a cure. I have times where I would be considered low functioning and non-verbal. Then I have times where I can communicate verbally, and interact quite well with others. Sometimes people can't tell I'm autistic, sometimes it is very obvious.

I think what many autistic people have issue with is the word cure. Autism is a pervasive disorder which means it pervades everything - our brain, our body. Autism cannot be separated from us. It is a neurological condition. I firmly believe in improving overall health - diet, self-care, teaching emotional regulation, managing sensory issues, medication if needed, helping us to understand social cues, teaching body awareness, and helping us to understand our own neurology. Diagnosis and fully understanding what that means can be a powerful thing. It definitely was/is for me.

So much is written about the negatives of Autism and not much positives. There are definite positives. My intense thirst for knowledge, my obsessive nature, my need to research about things before making a decision, how in-tune with my son I am, my need to improve myself. These are all things I do which are positive which is due to being Autistic. [added this after].

I am currently on medication which has changed my life for the better. Without it I would be having meltdowns a lot of the time, a lot more non-verbal, living as a hermit and not able to be the parent that my son needs me to be. I think if the language was changed to improving health, and supporting autistic people in a way that suits them that would make a big difference. 

I think it is up to each person to choose how they want to label themselves and what kind of support they need.

I have read some brilliant blog posts written by non-verbal autistics. Non-verbal does not mean they can't communicate or understand the world. It just means they need a different way of communicating - written communication. So using an iPad or computer literally changes the lives of non-verbal autistic people. Google Amy Sequenzia or Carly Fleischmann, if you want to know more.

I think the most important thing is to remember that autistic people just want to be understood and accepted. We have it tough seeing the world from a different perspective and never really fitting in. Many of us have formed our own communities mostly on-line and have found acceptance that way.

Most important is to remember 'nothing about us, without us.' We need to be part of the conversation over what happens to us and how we are treated.

I have had over 40 people in the group like this statement and no negative comments. I am pleased with my first experience with advocating in an NT group.

Update

I have not written in my blog for nearly 6 months. I have been very depressed and traumatised by a few things that happened to me. I am finally feeling much better and starting to heal from the trauma. I am a stronger, happier, more mature person as a result. I was so depressed that I literally could not get the words out verbally or in writing. So I just did not much of anything. I really struggled but I am finally starting to heal. It has been a very dark time for me. I am glad to finally move past it. 

I have some exciting things happening in my life. Which I will write more about when I have time. I have three articles/blog posts that I am currently working on so am focusing on that for now. 

Things are about to get interesting on this blog. Enjoy!


Sunday, 1 September 2013

A poem by one of my Autistic friends.

This amazing poem is written by one of amazing friends. Enjoy! I relate to so much of it. I got quite emotional reading it.

Musings of an Autistic Mind


How can I make you see my world?
This existence I live, you cannot perceive
Colours are bolder and brighter
They speak a different language to me
A highlighter on life lets me embrace
Things you may not see


You think I am looking at you
I am talking to you
Though distracted by 
That colourful necklace you always wear
Small things demand me to notice them
Like a great big neon sign
Pointing and saying
Look Here!


Lights illuminate the darkness , but
They test my tolerance and become too much
That flickering fluro light
Hurts my head tonight 
Fragrances assault my senses
Some tell tales of beauty
Others make me feel like I’m drowning
I cannot breathe


I channel your life 
Completely by accident
You are pregnant, I’m sure
My sense of smell and taste has gone into overdrive
Should I have not said anything?
You look at me like I am crazy
But you take a test
I’m right.


I feel out of synch with your expectations
Confused and desperately trying to decode
What you are really not saying
Social situations leave me reeling
As I try so hard to mimic 
What I think you want to hear
But end up sounding like a parrot
Or that I simply don’t care


Endless lines of coding in my brain
If, Then, Else
If only friendships could be that easy
Most people leave me open and raw
A wound constantly tearing 
This me I am, apart
So easily damaged
My heart beating, exposed


Oh and lust
Dearest obsessions
You fill my mind and steal away my thoughts
I get lost in the endless abyss of details
Object, animal, human being
All hold the possibilities
Of all consuming passions
To know so completely and 
Master your inner workings 
I want to be your everything


All or nothing
On or off
Black or white
I am bound
Overwhelmed
And oh so tired
Drained 
Or bouncing off the walls
With inspiration, colour, life
My mind racing
I cannot sleep tonight


A seesaw of emotions
In endless waves rush in
To consume me
Drown me
Violently accost me
Or
Envelop me
Smother me
Lovingly melt me


All are invasions of 
Others thoughts and feelings
So confused
Is this feeling
Me or you?
No wonder I avoid crowds
They bombard me
All six senses
So much conflict
So much noise!
I lose who I am
Who am I?


I know I have empathy
I feel it all too much
Someone turned it way up
I find myself in your shoes
Even when I don’t want to
So I put myself last
Always last, 
Ever loyal
My needs surpassed

~Cherie Patrick.

Friday, 30 August 2013

Musings on friendship

A week ago a friend of mine sent me the following list as a list of guidelines that she thought would be helpful for NTs to understand about having a friendship with a neurodiverse person (ND). My initial response was this: 'It's great. I wish more people were this understanding and respectful of different people.'

I believe it was inspired by this fantastic blog post by AutisticChick. Highly recommend reading it. It is an articulate and expressive account of what autistic people encounter fairly often. I think boundaries in friendships and relationships are so important. 

The following was written by the same friend who sent me this message.

Musings on Friendship (from NT perspective)

It has occurred to me that there is too much pressure in friendships all the way around. But especially so in the NT-ND friendship.

I believe that the NT should take the lion’s share of the social responsibility in terms of removing pressure and encouraging openness and honest acceptance.

I believe there should be guidelines within friendships:

1. Accept that each person is individual and unique and that your friend is probably completely unique.

2. Accept an answer of “no” the first time and don’t keep pushing. I liken this to social rape. Harsh? Yes. But what else do you call it when a person says “no” and the answer is not accepted. But...

· I know s/he really wanted it

· S/he just needed a little encouragement

· S/he needs to loosen up and have some fun

Can you see what I am driving at? A person, whether NT or ND can speak for themselves and their needs (as they see them) are valid even if you do not agree with them

3. As the NT person in the relationship, try to be considerate and give ample warning of any visits or planned/proposed outings, try not to put the ND person on the spot wherever this can be avoided.

4. As the ND person, please say no if that is what you mean/want to say. Within a true friendship this should be accepted without upset, irritation or another emotional penalty (see point 2. Above) and certainly no emotional blackmail!

5. Please do not try to “fix” your friend they are not broken nor is there anything wrong with them, they simply see life from a different perspective to you.

6. If an outing or visit is planned, please set a guideline on anticipated time and activities (e.g. I would like to go shopping with you for two hours on Monday or I would love to come over and see your new puppy, I only plan to stay for half an hour, etc)

7. If you have an outing with a specific goal, as the NT in the relationship, please leave time available in case it does not work out so that you can complete the goal another time (e.g. you need to buy a dress for a party coming up and something happens causing the ND in the relationship to need solitude – obviously not going to work being out in a crowded mall with parking time limits etc – plan that you may need to do another trip at another time alone) and do not make the ND feel as though they “owe” you anything as they do not and this will cause strain to the relationship through adding pressure and expectation.

8. Please foster a relationship with your ND friend where they will feel completely comfortable sharing their space with you without having to do anything other than... well share the space. So let them go about their day and just “be”.

Tuesday, 20 August 2013

Hiatus from writing

I have been taking a hiatus from this blog to focus on vlogging. I have been rather busy. If you wish to watch some of my vlogs, please check out my Youtube channel. I am planning to do some more writing soon. For now I am really enjoying vlogging. I have a number of ideas.

Saturday, 6 July 2013

Ableist Concern

I have not changed. I am still the same person. I'm just not pretending to be someone I'm not, anymore.
I've had people say to me, 'But you coped just fine doing xyz.' 'You've gotten worse, not better. You're using your Aspergers as an excuse to behave badly.' 'Aren't you low in something? Better get checked out.'

What those people who do not understand me nor attempt to understand me, do not get, is that those times I appeared to be coping ok was just acting. I can appear to manage things quite well. I can socialise when I need to. I have times I manage quite well. What they do not realise is how incredibly draining and exhausting it is for me. How I feel anxious and on edge most of the time. I appear to be coping just fine outwardly but inwardly I'm a mess and feel like I am barely coping socially. I will come home after an outing and I will literally collapse on the couch and stim. I will not have energy to do much more. I will spend the rest of the day trying to regain spoons in order to continue and cope with all that is expected of me. Which, as a parent is very challenging for me. I would go to these outings because it was the 'Mum' thing to do and then come home exhausted, only to face having to parent my son when all I wanted to do was have solitude to recover.
It takes a HUGE amount of my energy which I am often low in to maintain that level of normal-ness. You know what, I can no longer maintain it, nor do I care to. I'm finally free from all of those ridiculous expectations that are placed onto me by well-meaning misguided people. I choose not to live my life that way. I choose to find my own path and live life how best it suits me and my family.
I am ridiculously tired of being treated like and labelled as being 'difficult.' I'm not actually trying to be difficult. I just desperately need others to open their minds and try to understand how challenging life is for me in this not very Autism friendly world.


For now anyone who doesn't attempt to understand me on my terms is being kept at a distance because I just can't cope with their ableist attitude. It's like 'oh you can indeed do this, I know you can, just try harder and you'll be fine.' 
There's a pic from Karla's ASD Page which illustrates this perfectly. It features a person in a wheelchair with an able-bodied person standing above them telling them to try harder to reach something they clearly can't reach. It's the same for autism. We are different, we do not do things the way the rest of the able-bodied world does and we never will. I wish others would accept this and make an effort to understand us.

Actually I will not be fine if I try harder to be more like how others want me to be, I will get worse. I have already tried being the person others want me to be and I was not happy at all. I finally feel a sense of peace within myself. A feeling of self-love and acceptance and no one is going to take that away from me.



Ableist concern: where able-bodied people show their 'concern' for a disabled or differently abled person and to suggest whatever they like and not listen to the main person involved thus rendering the disabled person invisible. The disabled person is told they don't see things 'correctly' (apparently) so they don't get to have a say in how their own life is run. This 'concern' is extremely hurtful and undermining to the main person involved.