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.

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”.

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.

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: Burnout, Acceptance and Action.

I experienced Autistic Burnout in February this year.
Here are the links to the three parts:

My Spectacular Breakdown: Autistic Burnout

My Spectacular Breakdown: The Acceptance

My Spectacular Breakdown: Action Plan

I hope my story can help others in their journey to better understanding themselves and accepting themselves.

My Spectacular Breakdown: Action plan

Other things I am doing to help myself: making a big visual schedule with tasks broken down into doable easy to remember steps, an emotion meter, a spoon meter, a washing roster on it with wash cycles on it, a flexible weekday plan/schedule, a crisis/emergency day plan, a job list of jobs broken down into small doable tasks. I will have a BIG warning on it saying that I only need to do what I can manage and to not get overwhelmed.

I am also hoping to buy the CAT kit by Tony Attwood as I believe it will really help me with my stress, anxiety, emotions and other things.

I am going to make up different scenario social stories to help me cope with the unpredictable from pixton.com.

I am in the process of trying to set up an emergency activity box for Possum on days where I am not coping and he's home. Ideally I would like to have a number of activities set up and ready to go.

I have just bought myself a small week to a page end of financial year diary (July 2013-June 2014) which will help me not to overload myself with appointments which happened this past week. I rely on my phone for appointments and set reminders for the, because I can't see the week laid out in a visual calander I have tend to book too many things for one week and then spend the following week in recovry mode. The week to a page diary will certainly help me achieve this. The Early Intervention Specialist told me to schedule in 'nothing days' where I just do nothing but self-care and whatever I feel up to doing.

All of the above things I need to do requires a lot of energy and money which I don't have enough of. I desperately need extra support and money to be able to do these things which is why I am hoping my disability appeal will be accepted.

With the visual schedule I don't even know how to break it down into smaller doable tasks. It feels rather overwhelming. Yet I desperately need it. It is the same for the other things I am trying to do. It is overwhelming and challenging. I am going to take it verly slowly and ask for help.

My executive function is low. I find it difficult to do basic things like cooking, cleaning, organising and relationships. I use most of my spoons trying to manage my life as it currently is with the responsibilities I have. Anything extra and unpredictable wears me out hugely. I don't have the energy to cope with anything extra. I am using my spoons to cope with what I need to do to cope better. It really is 1 step forward and 3 steps backward so I feel I am barely getting anywhere, that I am stuck in a vicious cycle.

This is not something I can just snap out of suddenly and I will be ok. There is no quick fix to this situation. I know what I need to do but it will take time to heal and improve.

I have this desperate need to write. I need to write it all out of my head, to help me process everything, to help me understand myself better. Writing is a necessity for me right now. I write in utter desperation to get it all out of my head, to finally understand myself. I will stay stuck if I do not write. I feel called to Advocate for myself and others on the Spectrum. I have finally found my calling.

I am at peace with where I am at right now.

Summarised version here.

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.