“Get out of the car! Do you think I’m joking? And take the pillow and doona with you!”
I had a meltdown.
What’s doubly worrying about how I treated my housemate is that I didn’t think I needed to rectify the harm I had caused. It went right over my head until my housemate re-enacted what I had done where I nearly piss my pants from laughter because my behaviour was so outrageous. In our house, we allow room for meltdowns. This meltdown, however, was taking it a bit too far.
So what happened for me to get to this point of distress? PRESSURE.
Pressure and I do not mix well. There are a few reasons for this. And one is I identify with a PDA (Pathological Demand Avoidance) autistic brain. It’s a brain that has no defence how it receives real or perceived demands and it panics, like an anxiety attack. I am my child – they too are PDA Autistic. Demands that internalise as pressures from others (suggestions, requests, advice, offers of assistance or ignoring our ‘no’) don’t go down well for us.
“The most compassionate people … were also the absolutely most boundaried” – Brene` Brown.
I am working on being more compassionate toward my child and me, becoming super boundaried to look after our neurologies and bodies. This is the central part of our learning (if we did schooling it would be called 'educational curriculum'). We are to know our minds and bodies, what we need to be okay and look after them in order to thrive. It's not up to others to work this out – it is up to us.
So what was going on for me to meltdown this bad?
I noticed (AWARENESS) I had a rumbling agitation all morning, all day. I saw it increased when a woman approached me while I was standing on the beach looking at the waves rolling in training my child’s Assistance Dog. I knew I really didn’t want to talk (AWARENESS). I failed to; ACCEPT how I was going internally (where all my autism lives and breathes) and say 'no' to this chat to look after myself by preventing overwhelm and burn out. My spoons were full!
I’m AWARE I’m autistic, but at that moment I failed to ACCEPT I am.
I just arrived at the beach. My whole body is tired after years of constant 24/7 work combined by the ongoing work involved in navigating others when they misread or misunderstand our diverse beings. They invariably become critically judgemental toward my child and I. This is wearing.
She starts to rave how wonderful our country’s funding for disability is.
Immediately I say to her “I don’t want to talk about that crap” and then failed to stick to what I said. I failed to ACCEPT my autistic limits. I needed to take it easy that morning (my rest without rest) to prevent burn out. The woman continued talking about how wonderful it is, as they work for the funding scheme. I took the bait, hook line and sinker. I reacted. I informed her I’m a 24/7 Carer with no time or energy to put into extra work that comes with such a ridiculous funding scheme.
She didn’t HEAR me – she spoke over me.
She told me to get an OT (Occupational Therapy) report. I explained to her I don’t have money for that as I will be paying thousands of dollars over next 3 years for an Assistance Dog on a pension which means I have no money left over for specialists. A funding scheme representative already gave me printed information that there is no scientific evidence that Service Dogs help (*sigh).
The disability funding scheme will not fund our disability aid :(
An aid that actually helps in a way nothing or no-one else does. I also know (AWARENESS) I'm not able to start the funding scheme process because I can't deal with professionals, I'm still too traumatised by our experience with the mainstream education (ACCEPTANCE).
She did not HEAR me – she spoke at me – again.
My anxiety (panic from pressure of being 'told' what I should be doing) was rising. I’m aware I am autistic. However, I was failing to ACCEPT my PDA autistic limits. Instead, I forced myself to be ‘normal’ pushing myself to have an overwhelming conversation, triggering all my mainstream educational trauma. My beautiful quiet moment on the beach, regulating as best I could, was destroyed talking to this woman who was not listening to a word I was saying. Not hearing my experience. Just telling me what it should be. Telling me what I should be doing with no lived experience of what our lives are like, where we have been and what we can or can’t do. Triggering my PDA.
Another professional not listening – again. I walked away frazzled.
I was all over the shop – I was overwhelmed. I told my housemate and child’s other parent I wasn’t okay. My child’s other parent said the woman had a hidden motive to come and talk to me, pretending they wanted to talk about her dogs to get me hooked into her agenda which was to talk about the funding scheme. I said to my housemate;
“I’ve got to get better at protecting myself from people who come up to me”.
I realised (AWARENESS) I am usually not up for a chat while training a Service Dog and caring for a child with disabilities plus my own – it requires all of my resources and fills up all of my Spoons! My body is dealing with 24/7 service to my child, my Spoons are usually full. I was feeling pushed too far. Feeling pressured to meet other's demands to serve their needs; what they want me to do.
I also knew my reaction was stronger than what was needed (AWARENESS)– but why?
We went to a take away shop for my child’s early lunch and as soon as we walked in with our Service Dog, and child, trying to find and read a menu another woman walked straight up to me and not far from my face. Without pause she talks at me, “blah blah blah blah” and I’m thinking, ‘can you not see I am working with a Service Dog, doing several things at this time?’
No she cannot.
They are not able to be aware of what it is I am doing. This is the thing I am noticing with most humans. I am spoken AT or OVER because their seems to be only one consideration and that is what I’m being told by the other person. No awareness of what I am doing, what I am thinking, what I am feeling, what I am experiencing. Nothing. (I understand some humans are like this in nature, not something they can help).
This time I was AWARE of my autistic being, and I ACCEPTED it was spent.
Me: “Now is not a good time for me” and immediately returned my attention toward training the dog and reading the menu. My child melts down without food in their body (AWARENESS). Not something they have control over (ACCEPTANCE). If I expect them to control their meltdowns, to adhere to "no wait", I am practising being AWARE they are autistic but not ACCEPTING they are. My child's brain is not able to process certain information and regulate efficiently when the body is threatened, such as being hungry. Where if I were to say, ‘please just wait until we get you food’, they would try and then fail. Saying this to my child’s body means an explosion is coming soon along with self-harm.
Their body requires food to regulate and process all information more easily to be okay.
I hear the woman talking in a 'tone' about what I said to the person they were with. It tipped me over the edge. The number of humans that don't like the word 'no' is insane! Don’t worry about me and what I am doing. Just think of yourself and what you want! (I knew I was angry because I felt responsible for upsetting her – it triggered my Responsibility OCD). I made the order, walked straight out of the shop, placing the dog in front of me while I faced the empty restaurant next door. I did this to prevent anyone from coming up for a chat.
I just cried.
I stood there and I asked myself, 'how did I get here?' I become present to the agitation in my body. 'When did this agitation really start?' It started the day before when a friend told me they were bringing Abe over to my home. More pressure! This time from a mutual friend. Abe's been asked several times over the past several months to wait until I’m ready to meet (feeling pressure from someone drives me to find my freedom – my autonomy – even if I know they are only wanting to be helpful, supportive or kind). And here I am still having to say the same thing – again! I knew while I cried that the ongoing pressure from Abe was what had caused an inner disturbance making all other demands from others very hard for me to manage (AWARENESS).
A few hours later I raised my voice at my housemate (meltdown).
I cannot be this way. Whether Abe is pressuring me or not, or it’s just my perception, I had to stop whatever it was I felt pressured by (even if it is temporary) because it had a harrowing effect on me and those around me – especially my child.
My amends to my housemate and myself; to lovingly step away from this friend (ACCEPTANCE).
It took four days of constant thought to word a message to send that I felt mostly okay with. It always feels deeply uncomfortable to communicate anything that keeps friends away, to stop the pressure I feel.
Abe had challenged my decision not to attend a social ritual.
In doing so triggered my CPTSD. Social events of any kind are exhausting – especially those that are heavy with emotion! Strong emotions are difficult for everyone however I have to work extremely hard with my neurological challenges with memory (facial recognition, remembering the names of people I know), communication, body language and social expectations. And all the awkwardness and gross discomfort that comes with the difficulties that I subconsciously/consciously mask and try to unmask followed by the overthinking that occurs for days, weeks and sometimes years to make sense of those interactions.
I am exhausted just thinking about it.
And we're assuming I could actually go on the day because that's definitely not the case with my child's diverse needs.
Which is what makes me a #24/7 Carer (working 168 hrs a week).
Then there is the consideration of when I return home – exhausted – unable to look after my child very well. No one is by my side helping me (and I don't expect them to) in the wee hours of the night attending to their disability, co–occurring conditions and trauma needs – I have to do that. No-one else. Is it compassionate to make myself exhausted stressed from the pressure to do the socially right thing when I can't care for my child.
My child's difficulties escalate if I am struggling.
Some of my struggles are unavoidable (like a wake), and some are not (like my child's disability challenges). These are things I am to be AWARE of all of the time. I explained this to Abe.
My friend is aware I am autistic with a family with individual disability needs – yet not accepting it when they challenge my choices.
Able also challenged my decision not to have unannounced visitors. My home is a home of autistics who require loads of solitude for regulation and time on our work; personal inquiries and projects. and ‘drop-ins’ throw us right out. Literally. It works better for us if they are planned visits. But Abe dropped in anyway.
My friend is AWARE we are autistic – yet not ACCEPTING we are autistic.
I said I would be in touch when I was ready because of my new crazy workload. Abe bombed me with messages, pictures and invites to speak, meet and reach out. Yep, this is all PRESSURE to my brain type! I expressed I needed TIME to adjust to keep up with it all. Training a Service Dog, being 24/7 Carer, working on by business and supporting the two other 24/7 Carers is the equivalent of three full-time jobs.
My friend is AWARE we are autistic – yet not ACCEPTING we are autistic.
I understand others are not aware of the numbers of people who I've had to deal with regarding their demands and expectations coupled with their fuelled disappointment of critical judgement toward my child and I whenever we say 'no'. The constant judgment from others who misunderstand our neurodiversity, behaviour and needs is a trauma on its own. I'm sure of it.
The pressure is building up, big time.
My PDA brain switches into panic when I feel pressured. When my decisions and feelings are not respected, and or NO’s are challenged to be changed to a YES it causes deep anxiety where I cannot cope with my day-to-day living and responsibilities. Which can lead to a meltdown – an explosion of sorts (AWARENESS).
I let my friend know there is be no more contact – until I get back to them (ACCEPTANCE).
All of my boundaries are with the loving intention to take care of my child and myself, and our neurologies and never to cause others harm. We are not able to rely upon or put our well-being on hold or wait for those who are only AWARE of our autism, to get on board with ACCEPTING our autism. When others and I are not able to respect the decisions we make to look after my child and I, we are only AWARE of our autism. When we pressure us to be ‘normal’ or do what others want us to do, that perhaps I should make the same choices as my non-autistic folk when I know my child and I are autistic, that is only AWARENESS.
I AM TO MAKE CHOICES BASED ON ACCEPTING OUR AUTISM.
My choices that are based upon our individualised diverse family needs is ACCEPTANCE of our PDA autism/neurodivergence. It starts with us. I can step away, reduce or take their engagement light heartedly (as they do not understand what we are learning) from those who are only practising AWARENESS - those still expecting us to become 'normal' or non-autistic.
As soon as I sent the message to my friend, my whole body relaxed.
I'm not to be too angry with people who don't get it. They aren't to know about our needs. That's our job. I only get mad when I pressure myself when others do. I get mad at myself for feeling over responsible for others upsets or disturbances in my relationships. This is difficult for me – to move away from being non-compassionate toward my child and I – from AWARENESS. And move toward being compassionate of our disabilities and difficulties – toward ACCEPTANCE.
This too is a big part of my neurology.
I am responsible who I choose or not choose in our lives or how much I engage with someone. Those who are only at AWARENESS can cause unnecessary difficulty in our lives. We require humans who are ACCEPTING of our neurodivergence.
That's a compassionate choice to make.
STRETCH _ EMBRACE _ SOAR
Whether I accept this or not, or have a diagnosis or not,
it is still true,
that I, my child and/or my family have individualised diverse needs
who require humans who are ACCEPTING of our neurodivergence.
INTRAPERSONAL CREATIVE QUEST
To love, trust, revel and lead with our beautiful autistic minds
through knowing and acting on our Roarheart
the inner inexplainable knowledge and truth
~ our intuition ~
Reflect and create a picture or journal the answer to;
Have I thought, felt, done or experienced things like this?
Share with another anything discovered in the Sacred Writing/Creating.
Do I change my choices from a 'no' to a 'yes' for certain people?
I pause with quiet reflection upon those moments or with certain people where I meet others needs before my own.
TODAY’S THANK YOU
I am willing to THANK all my regretful, angry, fearful and negative thoughts I may have.
I will trust, even if I don’t want to, all that I am aware of now, is how it is has meant to be – to be open to something new.
I am willing to put aside everything I think I know about myself/child, my life, my past and my future, to have an open mind and a new experience with myself where I change my 'no' to a 'yes' to meet the needs of others instead of my own.
I am open to the possibility of moving from the AWARENESS of my needs to ACCEPTING what I need to be okay, receiving new thoughts to love, trust, revel and lead with our Roarheart [our inexplainable inner knowledge and truth – our intuition] learning how to know, direct and master our individualised lives.
PDA Society website – what is PDA
Pathological Demand Avoidance in Children
The Importance of Freedom. OCD
CPTSD – Complex Post Traumatic Disorder