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.

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.

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”.

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.

My Spectacular breakdown: The Acceptance

After I had stopped taking the antidepressants and felt so great. I started getting back into Facebook and connecting with people. It was like my mind finally felt ready to socialise somewhat. I finally felt ready to get involved on Facebook again. I started chatting to a few close friends online. One in particular. This friend has been incredibly helpful in my journey of acceptance, processing and moving forward to becoming the person I am meant to be. She listened to my many rants, vents and emotional brain dumps as I processed so many BIG things in my head. You are awesome, my dear friend! Thank you!

As I started to get back into Facebook I read many helpful articles on Autism which really helped me to understand myself better and I started to shed off the layers of coping mechanisms I had. I also started thinking differently about myself, being more accepting of my Autism and how my brain works. Instead of beating myself up and practising self-hate. I began to accept myself in the moment for who I was and what was going on. I did not try to fight it and get upset because I was not coping how I thought I should cope. Somehow this positive mind shift came about.

I strongly believe it is from the almost 12 weeks of me saying a positive script 50 times daily. My Mum is a counselor and last year she suggested I try this new therapy she had been trained in. The basic idea works on the notion that your subconscious is like a child and believes anything and everything you tell it (yourself) so if you say more positive things to yourself and about yourself eventually your brain will form new neural pathways for more positive thinking. It is called brain re-wiring therapy. It is based on the something written in the book 'The brain that changes itself.' I had a few sessions with my Mum and we came up with a script. I started saying this script 50 times a day and went for almost 12 weeks of saying it 50 times daily. I was only meant to go for 6 weeks but I went for longer. Using my Autistic determination to keep saying it. I gave up after I went into Autistic burnout as it was too stressful for me. I still remember it now and say at times when I start to feel myself get stressed. I find myself calming down faster upon saying it. My Mum told me that the effects of saying this script 50 times a day for 6 weeks still worked more than 6 months later. Powerful stuff!

I had been seeing my Psychologist fairly regularly in this time. It was about 8 -10 or so weeks since my breakdown. My psychologist was helping me to manage my emotions better, and to recognise when I was getting close to shutdown or meltdown. She talked to me about emotion surfing and that I did not need to react to things when they happened. She sent me a link about it. I started trying to practise it when I felt my emotions become intense and overwhelming. It really helped me to just start letting things go. I started saying to myself 'I love and accept myself unconditionally in this moment.' When things around me were chaotic, stressful, upsetting, when I felt overwhelmed. I said that statement. It really helped me to just accept things as they were instead of fighting them. I also started saying my brain re-wire script again.

After a week or so of practicing this my husband got a $500 fine from the Police. I was not in the best place when I received the news. It was around 9:30am and I was trying to change Possum's nappy. Possum was home from daycare because he was sick once again. Atrus texted me and I just lost it. I went into a crying hysterical meltdown. I vented about it on the AS Mothers' group. I was so mad and frustrated. I did not know how we would pay for it. Everything felt so hopeless. I did a lot of catastrophic thinking. I spent the day in shutdown, rocking in the rocking chair. My Mum came and took Possum to look after him as I was not in a state to manage.

However, I did not try to fight how I was feeling. I did not beat myself up and get mad at myself for being this way. I did not give myself a talking to about how much of a child I was acting like. I just let. it. happen. I accepted it as a process that I had to go through. I knew it would pass. I knew in time things would get better. It took me about 8 days to recover from the horrific meltdown during which time I had mild depressive episode but it passed. I did not allow myself to get into a vicious downward spiral of self-hate or negative thinking. I kept thinking to myself 'this will pass. In time I will feel better.' I did not judge myself for how I behaved or what I was thinking. I just accepted that this was where I was right now and that I was ok, that it was ok. I practised mindfulness and also repeated the phrase 'I love and accept myself unconditionally in this moment.'

It was after my horrific meltdown that I changed my name to having Âû at the end. I shared a little about my story on the Au Facebook page. They welcomed me and cheered me on in my acceptance journey. I felt relief, I felt free. That I was finally coming home and accepting who I was and able to start the journey of discovering myself. I felt a part of a community. I no longer felt I had to fight who I was, to beat myself up for my neurology. It was a defining moment for me. I finally felt at peace. I realised I was ready for the Âû name change. So I changed it. Since then it is a constant reminder for me of the Âû family I belong to and advocacy I feel intensely called to do.

Since I started accepting myself, practicing mindfulness when I have meltdowns or shutdowns, I find I recover faster from them. I don't sink into a big depressed heap and take weeks to recover. I accept where I am at, don't let my negative thoughts take hold, notice them and let them move on. I am much kinder to myself and accept that this is where I am at (mostly). I do struggle with days where I just seem to do nothing but recover from a shutdown. Those days are the hardest to accept but I am slowly getting there.

When I first had my breakdown February my DASS test was 10/10/19 (depression/anxiety/stress). I did another DASS test a few days ago and it was 4/11/19. I am not depressed. I am severely anxious and stressed though. I see this as a result of trying to live a life that was not suited to me. I pushed myself way way too hard to manage everything that was expected of me and I spectacularly fell apart.

I am in the process of appealing my disability pension because I can clearly explain myself now. I understand myself now and what is going on. Prior to my breakdown, I was clueless, I didn't know how to verbalise what I needed to for my application. I know that I will meet the criteria this time. My Psychologist, Doctor and Early Intervention Specialist are all writing letters of appeal explaining my situation and how I meet the criteria. They also explained that I did not actually understand what was going on for me at the time that I applied so that was why it was not clear to them how bad I was. I am also going to ask Atrus and my Mum to write a letter explaining things from their perspective. I will also write a letter. Once we have got all that together I will send it off and wait in anticipation.

I am trying to learn my limits, signs of doing too much and my triggers for shutdown/meltdown before they happen and then do self-care. My self-care currently is exercising daily, listening to a relaxation exercise and mindfulness. I am in the process of putting together a sensory/emotional regulation kit for myself which I will take everywhere I go. It will include cue cards with instructions of what to do to calm down or what to do to deal with anger. It will also include a protein snack so that if I am caught somewhere waiting and get hungry I won't go into a sugar low and then shutdown. Once I have put it together I will share a photo of it and what is in it to inspire others.

The Early Intervention Specialist has really been helping me with mindfulness, relaxation and trauma. He is trained in all three and will help me learn more about each one. He is also going to help me heal from my childhood trauma which is really good. I need to heal from my past traumas. I am so grateful that I found out about him. He is really open to learning about Aspergers too. He went to a Tony Attwood seminar a last week. He told me he is seeing Aspies everywhere now. I had to laugh.

I am finally in a place where I accept myself as I am. I feel so much peace and joy in who I am. I am broken, fragile yet I am strong. I am healing, I am improving. It will take time. I do not know how long. Tiny steps forward and acceptance of the process is the key. My poem Resplendent explains the the process I have been through and am going through.

I pushed myself for so long and tried to maintain a level of function that was well beyond my level of coping because it was expected of me to cope by my family, Atrus, and society.  I have regressed. I am more severely Autistic now. My coping levels are low, very low. I get overwhelmed, overstimulated, stressed, and frustrated easily. It is a sign of pushing myself for too long and not having any idea that I needed to pace myself and be kinder to myself.

Things that I used to find easy to manage are now quite challenging for me. I find myself going into shutdown easily, in the middle of trying to do something and then I can't think clearly and forget what I need to do next. So I start flapping in frustration and speak repetitively in a weird shaky voice because the words just stop being able to come out of my mouth. I have no control over this.

I have been remembering childhood stims. Flapping is one I remember doing. I flap when I am happy and flip my hands when I am stressed, anxious and overstimulated.

If I am not too overloaded and close to shutdown and there's not too much noise I can articulate quite well to Atrus what is going on for me. I was not always able to do this as mentioned earlier. I know now what is going on for me. I understand myself so much better.

My brain feels frazzled. Like it is unraveling constantly. I often spend so much time and energy trying to remember the process of what to do for an activity that I get overstimulated and tired. It is very frustrating. I forget the process of how to do things. I often stand lost in the middle of a room wondering what I was meant to be doing. I find myself going in circles around a room until I remember what I'm doing and what to do. This means that everything takes me a long time to do. I really need extra help to do things, to work out the steps involved of how to do things. My delayed processing is very slow which means it takes me awhile to work out the steps involved and what to do next. This happens to me when there is too much going on and being demanded of me. I very quickly go into this state. My shutdown threshold is rather low.

I find myself constantly losing track of time and everything taking a long time because I am so overloaded that I find myself needing to almost constantly stim or withdraw (shutdown) or desperately needing to write. This makes doing anything incredibly challenging to do and small easy tasks are hard and take me a long time to complete. It is very frustrating because I feel I can never get on top of things. There is so much to do and I can't manage it all any longer. So I don't. I accept that this is where I am at right now and don't let myself worry about what I should be doing.

When Atrus and Possum are home there is a lot of noise, busyness and things to do. I often go non-verbal and into shutdown in these times. I feel very confused and overstimulated too. I feel lost because I don't know what to do next or how to, because of all the busyness and noise. I feel I need to keep going and continue what I was trying to do but I often can't. I usually leave the room if possible to stim, and calm down.

I can manage quite easily writing, advocacy and networking, but other busy, sensory overloading things are more difficult for me. It is all online and written communication so it is easy for me to do. I don't know how to manage being a Mother and wife in this state. It takes a lot out of me. The times Atrus and Possum are home I tire easily and often need to withdraw. Earlier on I have been made to feel guilty by others for being this way. That I am being selfish. I am not! I don't have much more to give. My spoons get drained so easily by the small amount of responsibility I do have. I have let go of the guilt now. I have to, in order to heal.

Ideally Atrus would be at home and be my full time carer because right now that is what I really need. We are trying to work towards that. Atrus would like to work from home part time. He is a Graphic Designer so it is doable for him to work from home. We are quite interested in unjobbing. That is our goal. To completely change the way we live and really slow down our lifestyle. I am hoping I can get disability pension as that will really help us transition get out of this massive stress filled vicious cycle hole we are in. Atrus isn't in a very good state either. He has mirror depression, anxiety and is very stressed. We desperately need to change our lifestyle sooner, rather than later.

In time everything will improve. I know it will.

My calling to Advocacy

I just received this as a private message from a friend of mine. I had tears in my eyes when I read this. Thank you.  You know who you are.

"Hi there,
Just wanted to let you know that I appreciate your blog. I know in a lot of ways you feel you don't understand people but you are really opening my eyes (and my heart). Some of your journey that you have shared has me quite emotional, in the areas where you have been mistreated and shamed. Originally I started reading to understand my brother more (aspergers, I know not the same but it is the only resource I have found that clicks, if that makes sense?) But am finding myself more tolerant and understanding of pretty much everyone, neurotypical and neuro unique (not sure of the correct term, so this is mine).
You know we need different skills and weaknesses to be "complete" within friendships, society, pretty much everywhere.
Now I am rambling a bit. But the gist of this is that I think you are awesome (exactly as you are!) And I appreciate you. Thanks so much."

Thank you so much for coming to me and sending me this message. It means a lot and it has given me a boost in confidence. At times I wonder if I am doing the right thing by being so open and making myself vulnerable but then I remember that my story will help others too.

One of my favourite quotes is this: Vulnerability is the birthplace of creativity, innovation and change. Dr. Brene Brown.

I watched the two videos below more than a year ago and they were the catalyst for change in my life. I began to be more open about things and stop hiding behind my shame and vulnerability. 

My inspiration:

Dr Brene Brown: The Power of Vulnerability

Dr Brene Brown: Listening to shame

Candle for Alex Spourdalakis

My husband and I lit a candle for Alex tonight (a few nights ago now). We had one minute silence in memory and honour of Alex. I shared my thoughts and feelings about Alex with him. I read him my blog post about Alex. It was a sacred, quiet moment. RIP Alex ♥ gone but not forgotten.

Kelly Clarkson - People Like Us - Dedicated to Alex

Lyrics
Hey, this is not a funeral

It's a revolution, after all your tears have turned to rage

Just wait, everything will be okay

Even when you're feeling like it's going down in flames

Family Meeting with my Psychologist

The meeting with my family, Psychologist and myself was today. It went very well. Much better than I thought it would go. My Psychologist handled the meeting very well, I thought. We recorded the session so that I can listen to it later. I think it will be very helpful for me to do this. So much was said that it was all a bit of a blur. Everyone got to have their say and voice their opinions. My psychologist explained very well about Autism and how it affects my life to my family. In particular about meltdowns, Sensory processing disorder, delayed processing disorder. My family get it now. Yay! I don't feel so alone and misunderstood in this journey of understanding myself better. It sure helps to feel understood. 

My Psychologist wrote up a plan for me to do and for my family to do, so that we can work together better.

Here is my plan that she wrote for me:

1. Brainstorm different scenarios for different variations of things that could happen and write a social story/visual plan of how I will cope with various unexpected changes.
2. Create a visual timetable - using a whiteboard or velcro board
3. Calm inside (body)
   Calm inside (home) - environment
4. Appeal Disability pension.
5. Back-up meals in the freezer and activity schedule for my son.
6. Buy or make a board for the visual time table.
7. Possibly anxiety medication?
8. Create a Code for my emotions to communicate with my family, e.g. Angry - red and then tell them on a scale from 1-10 where I am. If I am really angry, I will say I am a red 10 and they will know to leave me alone to calm down. The other emotions are: Happy, Sad, Stressed/anxious, and meltdown. I need to choose colours for the rest.
9. Develop a crisis plan that works for helping me to calm down from meltdowns.
10. Buy a CAT kit

I added the last one as I think it will be very helpful to me. My Psych showed me her CAT kit at the end of the session. I could clearly see how much of a HUGE help it will be for me and how much I need something like this. She said she has used the CAT kit for children and adults on the Spectrum that she has worked with. It is not cheap though.

I am very drained. It has been a big day. I don't have the spoons to write much more. I still need to process a lot of what has been said and figure out how to actually do this, to make it happen. Inertia often gets in the way of things happening. Life is incredibly overwhelming for me right now. I am very much a hermit and do not feel up to doing much at the moment. I need to rest and regain spoons to cope with life better.

On the positive side I have found a visual timer for myself to stop myself from hyperfocusing and getting so absorbed that I completely lose track of time and then do nothing else. It is ridiculous how easy it is for my to hyperfocus lately and how hard it is to stop. I will share a photo of it soon. I was planning to buy one from here, but DH reminded me of one we already had from MIL.

Video about the CAT kit.

I am off to do some colouring in. Yay! I am in the process my own colouring book out of free colouring pages, special paper, coloured paper and raffia.

My chew/bite necklace has arrived! I have used it. Great to use. My son likes it and has had a bite too. I have bought him his own chew/bite toy.

Hope, understanding and a new path in my family

I added one of my siblings and parent to a group called 'Ask me, I'm Autistic' on Facebook in an effort to help them understand me better and bridge the gap of misunderstanding.

My sibling asked this question:

"I am wondering as a family member who is trying to support and understand her sister better, I am wondering what ways to go about this? It seems what I say is always the wrong thing and I hate that because I very much want to support my sister and it breaks my heart to see her so upset and overwhelmed. My sister is an adult who has just recently been diagnosed with Aspergers. I also struggle with being at the end of her venting or outbursts. So what I'm asking is how can I be more supportive and understanding?"

Some of the responses were powerful and incredibly helpful. Tania Melnyczuk, who responded offered much insight into meltdowns.

Here are her responses

"The venting or outbursts are probably meltdowns. It is important to understand the difference between an autistic meltdown and the controlled actions of someone who is behaving badly deliberately. Most aspies don't even know what happens in their own brains during a meltdown, they don't see it coming and they don't know how to prevent one. By understanding how it works in the brain, we can deal with meltdowns more effectively. Sensory overload is also often (but not always a factor). It is a vicious cycle. If you reduce the sensory stress, meltdowns are less likely to occur. Exercise and sleep are important in improving sensory tolerance and meltdown resistance. The way things happen in the brain make it impossible for any normal autistic person to regain self-control in the middle of a meltdown. That is why YOU need to be the calm one, because a person who is having a meltdown cannot just snap out of it. You need to be GENUINELY calm, because an autistic person can sense your tension, and it makes the meltdown worse if they know they are upsetting you because they panic about your reaction, knowing they have no way of stopping."

My sibling then responded with this:

"Thank you. It has definitely helped. My sister often says we don't understand her which I know we don't so this has helped to give a little insight. I understand the meltdowns but what I don't get is: is it ok to excuse the behaviour because of a meltdown or vent? So it's ok for them to carry on and abuse you because they are having a meltdown/vent? It's a good idea to remain calm, sometimes thought its over text messages. What do you suggest I do then? Ignore it until she calms down?"

Tania responded with this:

"I am going to give you a partial answer and at this stage it is still overly simplistic. I will answer in a more nuanced way later because it is not a simple matter. What works well for one does not work exactly the same for the other but here is a general rule: Do not fight back. Be calm and caring as though she were not being nasty towards you but crying in your arms about something which is not related to you. She is not in control of what she is doing and her IQ in that moment is very low. She is in that moment a mentally handicapped intellectually disabled person whose brain has gone into an anxious crazy spin, telling her she is being attacked and causing her to respond in a crazy way with university vocabulary which she learned before she got this temporary brain damage. She desperately needs to know that you have what it takes to not be afraid, not be offended, not be unsympathetic.

To respond in the manner that she is behaving would most likely be an act of will on your part. You can choose your own words and actions. She cannot choose to stop. She is out of control. Her responsibility is to learn how to prevent meltdowns, how to see them coming, how to apologise afterwards, and mostly, how to become a morally exquisite person, the kind of person who is so good and so holy that even if her brain is scrambled and the fight and flight response has been triggered, she will be unable to behave in any manner other than that of a saint. That is the only way she will be able to improve this.

Normal people can get away with moral mediocrity because they have control. People who cannot control themselves have no choice but to fill themselves up with love and righteousness and goodness, because it is the only way to ensure that what comes out of them when they are not in control is godly. 'Good enough' can't carry you where you need to go if you're autistic. I know that it probably sounds like I am being sarcastic, but it is actually just a pragmatic reality. Until she has developed that saintlike character, you are just gonna have to love and forgive her when she acts that way because she does not do it on purpose. A day or so later if she is not in a constant state of anxiety, you can check with her how much of it she actually meant or how she really meant it. If she is able to respond calmly and if you are able to distance yourself from the hurt that you feel. My best friend has been through what you go through when she does that and the emotional strain has been immense for him because he feels attacked and blamed."

My sibling responded with this:

"Thank you, that is just beautiful how you put it! As I was reading it I pictured my sister being the one crying in my arms. I really like the picture you painted because that is exactly what needs to happen. So thank you! I am going to pass some of these comments onto my other family members I feel that these comments have been beneficial and I can try and put them into action."

My sibling has emailed out these two statements to my husband and other members of my family. I think they are starting to understand me. I cannot describe the joy I feel inside after reading this. But...there is more to the story. Which brings tears to my eyes everytime I read it.
Just this evening my sibling and I were texting each other regarding the horrific tragedy regarding Alex Spourdalakis which I am in the process of blogging about.

This is some of our conversation because it did turn into a discussion about Autism Advocacy and how strongly I feel about standing up for those who are different and disabled. Those who do not have a voice. 

It is as follows.

Me:

I'm glad that Tania has been able to help you understand. I am also incredibly grateful about the fact that you are willing to learn and understand me better. Thank you! I really appreciate it. It means a lot. I love you.

Sibling:

I do want to understand you. All of us have been misunderstanding you your whole life and didn't know how to reach u and thought we were trying to do the right things. I'm sorry for all the other times that I have been misunderstanding to you. I know that it just made the situations worse! I know we still have a lot to learn but I am hoping I can apply some of these things that Tania spoke about the article you gave me.

Me:
Thank you. Reading that makes me smile. Yes everyone has misunderstood me my whole life and it is only now that I am starting to understand myself. Which has made it very hard to explain why I am the way I am to others.

Sibling:
I just feel bad for all the times I got upset with you and yelled at you when we were both frustrated. So I'm sorry and I hope you can forgive me pls?

Me:
It's ok. I forgave you long ago. Every time.

Neither of us understood each other

Sibling:

I'm sure it would have been even more difficult for you. I always felt for you when ppl were being mean but I didn't know what to do or say.

Thanks I appreciate that! I have forgiven you too!!

Me:
We all did our best with what we knew.

It's the past. I'm not going to get upset over it. We are starting a new journey of understanding as a family now so things will be different.

Sibling:

Yes we are, of building bridges and mending hurts from the past!

Disciplining Autism

All my life I have been labelled as the 'naughty' or 'rebellious' child by my parents, in particular my Father and those in my extended family. This was severely detrimental to my mental health. I grew up thinking I was a naughty, bad person who was out to cause everyone trouble by my out of control behaviour. As I grew older and understood myself better, I tried so hard to 'behave' and not be so out of control but I often failed miserably. Since realising I am Autistic, I understand that it is not about my being rebellious or out of control. It is very different. It is about sensory issues, emotional overload, delayed processing, being low on spoons or tokens, social situations, having a social hangover, unpredictable situations, etc. I now have far more self-awareness and am able to work with myself rather than against. This is greatly helping me to improve and heal from my traumatic past.

I urge parents of autistic children, please do not ever try to discipline the Autism out of your child. Work with your child, listen to your child, learn their language, try to understand them and be their Advocate. Please do not try to make them fit into the NT world. Make their (and yours) world Autism friendly.

Some helpful places to start:

• Mama Be Good
• Karla's ASD Page
• ThAutcast
• Peaceful Parenting a child on the Autism Spectrum
• Seek out Adults on the spectrum to be a Mentor to your Autistic child. We are around.

Delayed cognitive and verbal processing

What is delayed processing? It means a person processes things in their brain at a slower rate than Neurotypicals (NT). I need more time to think, process and then respond which unfortunately is not the way the majority of the world works. Musings of an Aspie has a fantastic blog post that explains delayed processing in more depth. I very much related to her blog post and it has helped me to understand myself better and not feel I am dumb because I think slower. I highly recommend her blog and her Facebook page.

I process things slower in my brain than Neurotypicals (NT). I tend to spend a lot of my time trying to process everything in my head that I miss out on actually doing things and tend not to get involved as much as I would like. It is not that I don't want to. I definitely want to get involved but at a pace that I can follow and keep up with. The world often feels way too fast for me. I am expected to think quickly, decide quickly, speak quickly, everything needs to be now, now, now! I can no longer keep doing that. It is too exhausting for me. I have never been particularly good at thinking quickly and speaking quickly in spontaneous situations beyond my control.
I will be invited to an event and will need time to think about if I want to go. I often don't end up going because I am too overwhelmed by the thought of going that I don't go. Especially if there are a lot of people there that I don't know. I don't like the idea of having to talk to people and end up looking dumb because I don't think or speak as fast as they do. 

I have been pushed into doing things that I don't necessarily want to do because I have delayed processing. I have been asked by a person if I would like to do a certain thing and usually appear blase on the topic but I am often not. Others mistake this as compliance when really it is not. I am processing. I need time to process what I am being asked/told. Once I have processed and really thought about it I am then able to give an answer or respond. Sometimes this is days, weeks and even months later. I am often told that I have trouble letting go of the past when I talk about something from the past. When really I have finally worked it all out in my head and think clearly on the subject and can finally talk about it as I need to. 

When I am overwhelmed or overstimulated by my environment and a person either wants to talk to me about something or asks me about something (and they want an answer then). I often can't think clearly to give an answer. I have been taken advantage of in that sort of situation because I was not able to think clearly about it as I needed to and given time to respond. I appear compliant to others when I am not. I have learnt to self-protect over time and just automatically say no or leave when I feel too overwhelmed to think clearly. It is far safer for me that way. 

Which leads me to a short example of delayed processing that only happened recently.

As you by now are well aware I suffered Autistic burnout a few months ago. So in this burnt out state my executive functioning is low, I often don't have enough spoons to cope with much, and I struggle with inertia, my mental processing is slower than it ever has been in overwhelming situations. 
A well intentioned, caring family member took it upon themselves to tell me that they thought I needed to do trauma therapy to help me get over all my past traumas so that I would recover from my burnout faster (their words, not mine). I was so overloaded and burnt out that I was not thinking clearly about it. I just told them, 'find out more about it.' This was a few weeks ago. Since then they have been pressuring me to change therapists, do trauma therapy and recover-memory therapy. They found out how and if I could change my mental health plan which I am using to see my current psychologist. Which I am able to, if I want, which I don't. All along I did not feel right about it but hadn't had time to really think properly about it and what I really thought about it. It was too overwhelming on top of everything else I am currently trying to process and deal with. So I put it at the back of my mind hoping they would move on and forget about it.


Unfortunately this is not the case, it was insisted that I organise myself and see my Dr to change my mental health plan. It all hit me this weekend upon chatting with one my lovely online friends and telling them what was going on. This was the first time that I, in fact had processed it enough to bring it to the forefront of my mind and think about it properly. Upon chatting to my friend about it I finally processed it and realised that I do not want to actually do this. It is too much for me right now. I do not want to change psychologists and start all over again in the midst of a trying to recover from a breakdown. I do not want bring up things from the past and have extra information to process and heal from. This family member reckons that my current psychologist is not helping me enough and wants me to see someone who will produce results.

I have decided that I am not going to do this. Not now. Perhaps in the future when I am in a better place and not so fragile. To do so will make it too hard to recover. It is too much information for my already overloaded brain.

I know that this family member was trying to help me, but it was misguided and subtle ableism. I do not see it as helpful at all. I see it as stressful and unnecessary. Please see my post on support.

That is just one example how I experience delayed processing. It happens all the time and I have only recently become more aware of just how much it affects my life. I struggle to assert myself in stressful situations as a result because I cannot think of the words to say in that moment. I find it difficult to maintain the flow of a normal conversation, especially when the conversation is moving quite quickly. My delayed processing can't keep up. Due to this I often have to withdraw from social situations more than I want to. I sometimes really do want to socialise but find it too stressful to try to maintain that level of normality. It often leaves me feeling worse off about myself rather than better because I end up feeling stupid because I appear dumb.

This is a wishlist written by the woman who writes the Musings of an Aspie blog for how she wants to be treated. 


"What do I need, you might be thinking? My wishlist:

1. Treat me like a competent adult. 
2. Be patient. I might need a little extra time to compose my answer or to process what you’ve said. 
3. If I ask for clarification, try explaining in a different way. If I didn’t understand the way you explained the first time, an exact repetition probably won’t help. 
4. Assume that if I don’t understand something, I’ll say so. 
5. Don’t rely on my body language or other typical cues for feedback about whether I understand what you’re saying. Unless you’re also autistic or know me very well, you probably can’t read my body language any better than I can read yours. 
6. Give me time to write down key information if I need to. 
7. Don’t oversimplify your language or speak unusually slowly or loudly. 
8. If you’re giving me verbal instructions, break them down into specific steps and explain one step at a time. 
9. If I keep repeating a question or statement, I need a stronger acknowledgement that you’ve heard and understood me. 
10. Treat me like a competent adult."

I couldn't agree more with that wishlist.
In what ways do you experience delayed processing?

Welcome

I have decided to start a blog about being a differently-abled (disabled) Mother, yes I am disabled in a sense. I intensely dislike that word. I prefer to think of myself as neurodiverse. About a year ago I read Rudy Simone's book 'Aspergirls'. I suddenly realised that I in fact, had spent my whole life pretending to be something I wasn't. I had been trying so hard to fit in, appear normal and be normal when I never would be. I didn't realise that this is how I am meant to be. My brain works differently. For the most part it has been a huge relief for me to finally realise that I no longer have to try and be normal. I have given myself permission to embrace who I am. However this has brought about a rather spectacular breakdown/burnout to happen for myself. I no longer know who I am in a sense. I feel lost. I feel I need time to process all this BIG stuff going on in my head. It is hard to do this now that I am a Mother. My son needs me. My husband needs me. I need to get myself into a better place and work all these things out in my head so I can move forward to becoming the person I am meant to be.

I feel like I am going through a life crisis, everything I have known and thought about myself is different now and I do not see myself as the same person in some ways. I always held myself back when I was younger (early 20s) because I always felt others saw me as 'too' anything so I held myself back and now it feels like all the 'too' wants to come out and I just want to fully be myself. I don't mean I want to stay in the place I am in. I mean there are things about myself that I tried so hard to change to appear more normal that it has taken it's toll on me. The absolute relief I felt when I realised I had Aspergers was nothing I have ever felt before. Then I realised I had been hiding myself for so long and that I wasn't being true to myself. So many BIG things going on in my head, it is exhausting!

I am currently in a really bad place stuck in a seemingly never-ending shutdown after shutdown cycle which seriously affects my executive function. I do not know how to get out of it. I am trying but just feel so stuck. I do have some support in place which helps some but my son has been sick which means he can't go to daycare, which means I go into shut down again.

Welcome to my journey as I heal through writing.