We Need To Talk About Sometimes Being Non Speaking

I was non speaking for most of Tuesday. In fact, I felt non speaking all day.

What? What do you mean you felt non speaking? You’re either able to speak or you’re not, right?

Not always.

When I am non speaking, it means it is painful to speak. It hurts to move my thoughts into my vocal chords and to wrap my tongue around the consonants of each word and push them out of my mouth. The sound hurts my ears and I get a headache and feel sick and dizzy. It hurts vibrationally, like the pain reverberates around my body.

There are other Autistic folx who are always non speaking. There are some who never experience being non speaking. Some folx experience being situationally non speaking - perhaps in a social setting where they are expected to or feel pressure to neuro-perform, rather than act in alignment with their neuro-normal, they might experience being non speaking. I don’t use the term nonverbal, it means ‘without words’ - and many folx who do not use spoken language use other forms of communication such as sign, writing, gestures, body language, sounds, pictures. Some of these involve words, some don’t, but non speaking gives a specificity that is more accurate. Also, many folx equate nonverbal with ‘not understanding language’ and this is usually not the case, and for me it is too closely aligned with the thinking that gave us the ‘r’ word slur and all its ignorant, ableist and harmful assumptions.

When I am well rested, talking about something I am passionate about, feeling generally safe and content, I can talk and talk and TALK. In fact, often I need to hear my thoughts out loud in order to fully process them. Writing them down and re-reading them several times will give me the same level of processing and integration as hearing them once out loud. Most people I know would associate ‘talks a lot’ with me. That’s one of the reasons it is incredibly difficult to tell others that I experience being non speaking. How could they reconcile the chatty AJ they know with someone who can’t speak? I must be exaggerating, I must have changed somehow, or perhaps I’m just ‘after the attention’. Most of the time, when I am non speaking, I can force myself to speak. I spent years neuro-performing and speaking when my mindbody needed me not to, so my system has had many more years acting out of alignment with its needs than in alignment with them. Before I knew I was Autistic I forced my way through feeling non speaking and most other mindbody needs. I had frequent meltdowns, anxiety attacks, was often ill, and was always, always tired - I used a variety of stimulants to manage this and fell asleep anytime I was sitting for very long without an interesting task - this happened in class at school, in lectures at university, in meetings at work, mid conversation with friends, anytime I was on a bus or train. However, over the last few years of beginning to honour my neuro-normal, and no longer using stimulants, I am observing my system as it naturally is, and this means that I am acutely aware of when I need to be non speaking. If I still force myself to speak, I will pay the price, which is usually an intense and painful overwhelm that leads to shutdown for several hours and sometimes into the next day.

We are taught to be mistrustful of those who tell us they are Disabled without being able to prove it to a standard that we consider acceptable, we are particularly mistrustful of support needs that change. If someone uses a wheelchair a lot of the time, but not all of the time, there will be folx who say they are ‘faking’. When diagnosed for Autism we are assigned levels, as if to say our support needs are fixed, when they are in fact highly dependent on a variety of factors. Our conditioning to only believe binaries is at play here, along with the scarcity mindset that capitalism and manufactured poverty have instilled in us. We have been taught that you are either ‘broken’ or you are ‘normal’, and anyone claiming differently has an agenda and is ‘scrounging’/taking advantage. The framework we are working from is inaccurate, and rather than question this, most of the time we question the credibility of the person in front of us.

Some of my support needs change, because my experiences and circumstances change. Being non speaking is brought on by a few things. Usually, I will have experienced physical pain recently - maybe I will have been ill, or had a heavy period. I will have experienced emotional pain recently - maybe I will have dealt with a challenging personal relationship, I will likely have experienced some racism and/or transphobia (this happens directly and indirectly almost every day). I also will have had to deal with unpredictable things - had to expend a large amount of cognitive and or emotional labour when I hadn’t planned to. All of this is playing out against a background of the context of our current reality which is trying to crush our souls, an ever present threat to the nervous systems of those awake to and experiencing injustice. All of these things led to this most recent experience of being non speaking.

The lack of belief in those who have experiences that don‘t align with our conditioning is another way we can make the connections between ableism, racism, transphobia, homophobia and all the other products of colonial constructs. When Black and Global Majority folx share experiences of racism, we are not believed. They didn’t mean it, we misunderstood, we are overreacting, we are angry. When folx say they are trans, we are mentally ill, we are confused, we are using it as an excuse to predate vulnerable people. When folx say they are gay, it’s just a phase, they can be ‘converted’. Not believing people to be able to accurately understand or convey their own experience is a key aspect of colonial control. They need us to trust the systems and constructs we are being conditioned to obey, and therefore we have to learn not to trust ourselves. If we do not trust ourselves, we do not trust others. The exception to this rule, is that we believe those who embody colonial systems; white, male, non-Disabled, neuro-performing, cis, het, wealthy, etc. We have been taught that the systems are infallible, should not be challenged, and that those who embody the system are to be treated as such. Those who embody challenge to the system, are not to be believed.

The reality is that many of our needs change dependent on a variety of factors. There are also support needs that remain the same. Both of these things are true and can be true in the same mindbody. When our needs do change, our nervous systems tell us. We have mechanisms built in to protect us when we are in danger of injury - whether that be emotional, physical, spiritual - and our mindbodies will use every resource they can to alert us to it - including causing us pain. When I become non speaking, it is because I have been harmed, and my mindbody is doing what it can to protect me from further harm. I owe it to myself, to this vessel that is supporting me through this life, to meet that call with compassion. Layers of conditioning and neuro-performing and surviving colonial systems means that we often ignore, dismiss, fight and self-harm around our changing needs, as if they are a sickness to be squashed. To exist is to be in a permanent state of change, and the shame and mistrust around this is the illness that we need to heal from.

—AJ

Today’s Neuro-Embodiment Prompts:

Suggestions and questions to help you engage with mindbody decolonisation:

• Do you resonate with any of the feelings described around being sometimes non speaking? How can you begin to honour your neuro-normal when speaking is painful/extremely difficult? How might you want to communicate this to those around you?

• Are there folx in your life who experience situational or occasional non speaking? How can you support them in this? Are there folx who may be experiencing this but haven’t communicated that with you? How can you create safety for them to share this with you? How can you support them even if they don’t?

• Reflect on how your own needs change dependent on your experiences and circumstances. Where can you bring more compassion to your changing needs? Where can you bring more compassion to the changing needs of those around you?

• How can you learn to lead with trust and belief when people share their experiences with you?