What I knew when I was young – how to regulate…

This kid was a genius.

This is me, Autistic clearly, at age 4 or so with my brother. I am sucking my fingers, and I am also rubbing saliva on my outer ear and making it cold.

Why would I do this? Well… I know now I think.

First lets talk about the sucking the fingers.

There’s evidence that sucking a pacifier generates Oxytocin. Here I was sucking my fingers – it would have had skin contact (you generate more with a mother’s nipple).

This lessens stress.

So the other ways mentioned there that Oxytocin can be generated – sex (everyone knows this one), and hugs.

When this behaviour was stopped for me by threat of having sheep shit put on my fingers. I became hypersexualised – a terrible result – for obvious reasons.

This destroyed a lot of my childhood. 😭

Ok…
The second thing is a bit weird. Why would you put saliva on your ear and make it cold?

Because you are stimulating your vagus nerve – also instrumental in regulating depression/anxiety and inflammation in the body in trials.

This needs two things to explain it – there is a logic leap here. You can stimulate the outer ear with electricity to stimulate the vagus nerve as described here.

Cold water seems to regulate it – sticking your face in ice cold water – here they test it (and the neck region is identified).

Ok but why both at the same time?
Well… The Vagus nerve is responsible for helping oxytocin absorption.

Apparently also my over eating might have been a compensatory technique for this – I am addicted to gummi candy. I like sucking on it. It’s very much like a pacifier, or a nipple.

Turns out – I always knew what to do to regulate my nervous system – but I was being "childish".

Seriously so mad sometimes about how we make people stop doing stuff we don't understand.

Not long after I stopped too I developed Asthma. In rat trials they have found a link between AVP (the stress chemical that takes up the same channel as Oxytocin) and Asthma. Oxytocin mediates the asthmatic effect.

Oh yeah… I got a lot more ODD after this… I was far more aggressive. Guess what Oxytocin seems to do?

REGULATE AGGRESSION.

I fucking knew what to do and I had it crushed out of me.

Wonder why people tend to have passionate sex after massive fights?

My hypothesis – regulating their nervous system.

We are built with a lot of the tools and innate knowledge about how to regulate our nervous systems it seems. We just don't be human in this society. We be whatever the fuck manners are.

One of the ways to generate oxytocin is skin contact… I think without understanding the sensory system of Autistic people you create conditions for things to get worse. I needed deep pressure hugs – my parents both do this. Light ones make me flinch.

It seems a lot of the issues around ADHD and Autism are not innate but generated by not understanding the central role of nervous system regulation for those who tend to have hypersensitivity.

This also explains why massage I think is vital not only for releasing lymphatic fluids in the calf muscles (which causes toe stepping) but to actually generate oxytocin.

Give me a research grant I am begging you.

Originally tweeted by Rory – ADHD Autistic OCD (@roryreckons) on November 14, 2021.

Communication Breakdown

In regard to the sharing a personal anecdote when people tell you something I want to explain a bit why this gets to me so much. There’s a host of reasons, but mainly it comes down to how empathy works for me personally.

There are times in my life where this has gone right, but I realise now that I have been pushed out from friend groups for using this method of communication. I have also heard:
“Why do you make everything about you?”
“OMG shut up”
“Yeah I get it you had a rough life” *snarky*

I have OCD – my biggest fear is that I am a terrible or unmoral person – this came from a lifetime of being referred to as a bad kid from a really young age. I was certain I was going to be doomed to be awful. One of my fears is that I have is that I am these things (Dark Triad) – in fact this is something that I’ve been terrified of for a long time.

A Venn diagram of the intersecting traits of Psychopathy, Narcissism, and Machiavellianism.

Ok so in context here.
Narcissism:
I use 1st person pronouns all the time (I actually do this to not generalise my experience), when I talk to others in conversation I relate things to myself. (focus on self)
By this definition I am narcissistic.

Psychopathy:
I am ADHD – I am impulsive.
I sometimes have flat affect due to either PTSD or being Autistic – ‘Emotionally Cold’
Inappropriate emotional expression – I have to perform emotions in NT ways – I had to learn acting to this.
By this definition I am psychopathic.

Machiavellianism:
I get accused of being manipulative and self-interested, I am sometimes domineering in conversations due to excitement and I like to talk about things.
By this definition I am Machiavellian.
I have the full set of Dark Triad traits.

TW / suicide
Now if I hadn’t discovered through talking to other neurodivergent people that this is a thing – there’s every chance I may have ended my life before this if I discovered this information – I was a total people pleaser and this would have made clear I was “evil”.

Here is the really frustrating part. This is a key area where there is a double empathy problem. Not only do you perceive us not to have empathy for you, you do not have empathy for our way of thinking. You attribute malice where there is none. This is really harmful.

Firstly, I need you to know that every time I have ever shared a story it’s never been a competition for “most traumatic”. I am a cooperative person – that is my default state. I do not like competing with other people. I don’t do it for this reason.

Secondly, I didn’t know that this was ever a “bad” thing, and when I tried to explain that I wasn’t trying to make it about me people got even more mad with me – this would end friendships. I now in retrospect understand why because it’s another fundamental misunderstanding.

Thirdly, there is no act I can do that is more vulnerable to me than sharing some part of my life, it’s an act of pure empathy in my view. It means I understand your experience and I want you to feel less alone. I get where you are coming from, I know this must be hard.

Finally, this is what I needed from other people but I rarely, if ever, got it. Instead people would minimise my pain – “It’s not that bad”, or “At least you are not <some condition that is worse>”, or “You are being too sensitive”. I stopped sharing anything.

For nearly a decade I never opened up to anyone beyond a completely superficial level about myself. The entire time I was breaking down alone and isolated with the things that had happened to me. This actually makes the body physically sick. I needed to release this stuff.

Last year for the first time a dear neurodivergent friend on Twitter let me “trauma dump” some really terrible stuff that had happened to me, they then said – “oh yeah that sucks, I went through… <some similar circumstance>”

I didn’t feel alone – I didn’t feel shame.

So finding out that people dislike this type of sharing seems especially brutal. I believe that for a neurodivergent person to do this it is often as an act of love and pure empathy – it means I don’t want you to walk alone. I will accompany you.

I want conditions and communication to improve. If you just need to vent – now I ask, or you could be proactive and tell me.

I just want us to get along. If you are clear in communication, we can have thriving relationships.

I never intended to take focus off you. ❤️

I want to mention if the neurodivergent person is ADHD with impulsive issues and it’s untreated – there can be extreme difficulties in getting this message through to them. ADHD untreated is like a brain goblin that smashes reasonable actions through the need for instant relief.

If someone is told and they don’t at least make an effort that could be a problematic behavior.

Originally tweeted by Rory – ADHD Autistic OCD (@roryreckons) on November 14, 2021.

What’s something about therapy most people don’t understand?

Most therapists don’t know how to do it.

If you hide behind a professional facade it’s not going to work. If you provide solutions it’s not going to work long term. If you want to affect meaningful change in your clients lives – you must respect autonomy.

Apparently most of you have humanistic client-centred therapy as the core component and you constantly fail to meet any of the conditions defined that makes it work. Read Carl Rogers stuff if you claim to know, so many have not, especially read his critiques of implementation.

If you treat therapy as formulaic or approach it with a stock idea of what you’ll deliver, you are providing the McDonalds of therapy. Short term results for a longer term harm.

If your client says they can’t do something. Your job isn’t to chastise them. It’s to find out the block. If they don’t know. You work to figure that out. You don’t use coercive methodology to get what YOU want. That is some authoritarian bs.

There is good stuff in DBT, CBT and ACT. Trauma informed approaches are the single most important part of being a good therapist. Unconditional positive regard means something, your client comes to release shame, you don’t reinforce it. Bad therapy kills people.

Before offering a tool, or method, or anything, ask if your client wants that. Because if you just ham fist some method in there – there is a massive disconnect between what the client thought the issue was and how they expected it to be handled, and what you did.

Meditation without an awareness of the risks of retraumatization is potentially fatal (speaking from personal experience). It’s not a front line tool. Systemic and social causes of issues need far more consideration.

Stop trying to define human experience in neat categories. Trauma is anything that the person found traumatic. You know trauma when you see it. It doesn’t have to be something defined. I am still traumatised by my first nightmare. I also have clinical PTSD, it’s the same.

It’s an experience or set of experiences that they keep coming back to. It’s unintegrated memory. Some part of the experience hasn’t been processed. It can take a long time to find that stuff out. Your clients can be curious about themselves in their own time too.

Even if they come up with the wildest solution or idea about what caused it, your job is never to correct that. Getting told “no it must be deeper than that” when I finished getting over some stuff made me spend weeks trying to figure out a deeper meaning it’s stuck. Validate.

TW / abuse
Most victims of childhood abuse often don’t know they’ve been abused. I wish more therapists knew that, emotional abuse is as damaging as physical and sexual abuse on life outcomes. This root cause is often not caught.

If you defensively reacted to the stuff I’ve said here or nit picked it. There isn’t really a more glaring way to declare your unsuitability to the role. Legitimately telling me therapy isn’t for me is a huge red flag. I have a good therapist.

I’m not trying to attack therapists FYI. I’m trying to get you to do the thing you want to do better. ❤️

Gonna drop this reference here. Everything I say comes from a researched perspective.

Notably, the findings highlight the importance of studying the impacts of emotional abuse, which seems to be a highly prevalent, understudied, and chronic form of maltreatment that is as toxic as other maltreatment forms.

The invisible scars of emotional abuse: a common and highly harmful form of childhood maltreatment

Originally tweeted by Rory – ADHD Autistic OCD (@roryreckons) on November 11, 2021.

Masking – Forced Incongruence

I want to talk about Masking (also known as camouflaging) – the act of appearing neurotypical.

Quite often the research around this frames it as a good thing or a conscious choice. This is rarely, if ever, the case. It’s an adaptation to extreme stress after a life time of conditioning as we are told that being ourselves is unacceptable and so we start to hide our true selves.

There’s ample research now on the negative effects of this on Autistic people, but this likely applies to any minority group that has to hide elements of their identity. For those with intersectional identities the extreme stress of hiding more and more of yourself takes a toll.

I know from personal experience. For the first 35 years of my life I kept most parts of my identity secret except to a few people. As an ADHD, Autistic, and non-binary bisexual person I was terrified growing up in a toxic masculine environment that if I showed anyone who I was – I would be outcast.

Incongruence

My favourite psychologist – Carl Rogers – talked about the fracturing of the self to create an ideal self that was unattainable.

Rogers identified the “real self” as the aspect of one’s being that is founded in the actualizing tendency, follows organismic values and needs, and receives positive others’ regard and self-regard. It is the “you” that, if all goes well, you will become. On the other hand, to the extent that our society is out of sync with the actualizing tendency, and we are forced to live with conditions of worth that are out of step with organismic valuing, and receive only conditional positive regard and self-regard, we develop instead an “ideal self”. By ideal, Rogers is suggesting something not real, something that is always out of our reach, the standard we cannot meet. This gap between the real self and the ideal self, the “I am” and the “I should” is called incongruity.

Carl Rogers – Wikipedia page

I have lived with a constant identity crisis since I was very young. I never felt like I had a fixed personality and I was terrified a lot of the time that I was a psychopath, or sociopath because of this. Whenever I interacted with people I knew that there was parts of me that I was blatantly hiding.

Simply put I was forced into trying to attain an ideal self that was:

a) Impossible for me to attain
b) Completely at times at odds with my own values

In order to fit in masking I drifted further and further away from how I perceived myself toward the ideal self created by whatever group I was in. This damaged my psyche in ways that are hard to explain. Except that every time I strayed further from my values the higher the level of internal conflict – until finally I entered a life threatening Autistic Burnout.

Phoebe Charn_Power_Tool

The diagram above is what the discovery of my full neurodivergence explained to me. The more I demask and live authentically, and shed the expectations of a society and world that doesn’t align with my own perceptions, the more stable and happy I have become.

There’s no positive benefit to masking innately for neurodivergent people who have to hide their traits. Instead it causes a huge internal hatred. Simply living to appear neurotypical is exhausting.

The way to lessen the load of the damage done to masked neurodivergent people is to allow them to take off the mask – unfortunately this isn’t an easy process. I still do it unconsciously all the time, and then realise I am extremely stressed after doing it. It’s become an instinctive performance whenever I interact with other people.

I often wonder what my life might have been like had I not had this forced incongruence. I am reconnecting with my ability to innately feel joy independent of other people – that was the first price paid for my act of ‘fitting in’. If you encourage neurodivergent people not to be themselves – they will never truly belong.

Brené Brown aptly captured the argument I am making here in her Netflix special.

I truly believe that this is why we tend to thrive in neurodivergent spaces, because we are able to be ourselves – not the broken neurotypical imitation the world forced us to be.

ADHD Acceptance Month – Acceptance means…

ADHD Butterfly Source

Acceptance means…

Acceptance means that ADHD people don’t have to go through what I did, and what so many others have.

Acceptance means that ADHD people get to create an identity rather than having it eroded.

Acceptance means ADHD people will will be able to focus on their strengths, instead of hyperfocusing on their weaknesses.

Acceptance means ADHD people will love themselves for who they are – not who they’ve been made to believe they should be.

Acceptance means ADHD people will put their own needs first, rather than living for the expectations and approval of others.

Acceptance means ADHD people will be treated with unconditional positive regard in all aspects of their lives so that they may grow into the people they want to be.

Acceptance means ADHD people will love this about themselves, rather than viewing it as a curse.

Acceptance means ADHD people won’t have to fight for basic acceptance, we won’t have to deal with uncompromising systems that seek to destroy that which makes us great.

Acceptance means a better world for everyone, a more creative, loving, human embracing society that recognises the value of all people.

Acceptance means doing my part to make this all achievable.

Acceptance means the capacity to feel love and to be loved – no one should ever be denied that.

Daily blog challenge

October is here usually known as ‘ADHD Awareness Month’ – but IMO we ADHDers deserve more than that – we deserve acceptance. We need to be listened to, we need realistic accommodations, and help. We need to start moving toward ADHD Pride Month. People should be able to feel proud of being ADHDers, because the alternative is shame.

For 31 days I will be writing every day on being an ADHDer using this list of prompts:

ADHD Acceptance Month – Hyperfocus

ADHD Butterfly Source

The blessing and the curse

Hyperfocus is incredible, and incredibly frustrating. An extreme amount of time dedicated with a single focus on anything that your mind deems interesting… only it’s whatever your mind deems interesting – spend 3 hours learning about the history of the Venezuelan political system… only that you should have been doing the dishes.

Hyperfocus has got me through some tough times, in fact I think a large part of my survival is due to hyperfocus. During my Bachelor of Software Engineering we had a insurmountable workload – this meant that I had to pull all-nighters – a familiar concept to many ADHD people I am sure. People were always surprised that I wasn’t tired, the truth is that when in hyperfocus state, it takes utter exhaustion for me to finally cease doing the thing – if no one interrupts me.

At the same time, hyperfocus has probably taken a few years off my life due to focusing well past the limits of reasonable expectations. I once was awake 70 hours stuck playing World of Warcraft when it first came out during a holiday. I had also not eaten and barely drunk anything – when I was alone at home, with no one checking on me. I nearly didn’t make it to my bed I was so exhausted.

It’s the single most powerful benefit of ADHD for me personally, but it’s not controllable in the way that would actually make it a superpower most of the time – instead it’s like having laser vision that I waste hours heating up a lake with, rather than anything useful.

Hyperfocus is also what makes rumination intense. It shuts out any response to anything else in my head. I get stuck in a cognitive pattern, intensely experiencing whatever negative emotion or experience I have had on a seemingly infinite loop until something somehow breaks in.

Of all the things I wish I had more control over, this is the one I would want to be able to use like a switch – in this state I don’t really exist, my internal monologue ceases, there’s a single minded intense focus on whatever I am focusing on, I tune out nearly 90% of the world around me with only misophonic sounds bringing me back.

An island get away in my head, to an undefined island – sometimes good, often bad.

Daily blog challenge

October is here usually known as ‘ADHD Awareness Month’ – but IMO we ADHDers deserve more than that – we deserve acceptance. We need to be listened to, we need realistic accommodations, and help. We need to start moving toward ADHD Pride Month. People should be able to feel proud of being ADHDers, because the alternative is shame.

For 31 days I will be writing every day on being an ADHDer using this list of prompts:

ADHD Acceptance Month – Favourite Memes

ADHD Butterfly Source

Favourite Memes

A few favourites.

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Daily blog challenge

October is here usually known as ‘ADHD Awareness Month’ – but IMO we ADHDers deserve more than that – we deserve acceptance. We need to be listened to, we need realistic accommodations, and help. We need to start moving toward ADHD Pride Month. People should be able to feel proud of being ADHDers, because the alternative is shame.

For 31 days I will be writing every day on being an ADHDer using this list of prompts:

ADHD Acceptance Month – Dealing with Boredom

ADHD Butterfly Source

The F*ck It Method

Few things have made my life easier than this one small technique. It helps me with analysis stagnation, multiple option frustration, prevents me from falling into deep depression that causes anhedonia (an inability to feel joy when doing things I love). It involves these simple steps:

  • Randomly select the first sub five minute task I can think of
  • Say “F*ck it!” really loud while getting up as i’ll usually be sitting or lying down when bored. [This is half directed at the task, and half directed at my falling into a bored state]
  • Do that task

I actually use my negative (or verging on depressive) moods now to do chores I hate – so I have a mental inventory of things that generally only take less than five minutes:

  • Gathering up washing
  • Gathering up random dishes
  • Dusting one room
  • Doing a small amount of dishes (we have no dishwasher)
  • Cleaning a window
  • Cleaning the shower

Boredom seems to be one of the worst parts about ADHD – and I’d rather put times when I am feeling awful to good use – I usually cannot focus on anything too hard to do during these times, so I use it for stuff I dislike – that way when I have executive function I can use it on stuff I actually enjoy doing.

The second I complete this task, I record it and tick it off (I have talked about how I use Moleskine Journey in the past, and that is what I still use as it’s multiplatform) – I do this with everything I do because one of the best ways to combat boredom for me is to remind myself I am doing stuff.

After completing this task and with the reward window of adding to a checklist right there next to the task I completed I tend to have a boost of motivation to actually move onto something else.

My hack for boredom – get angry about being bored and do something I hate.

Daily blog challenge

October is here usually known as ‘ADHD Awareness Month’ – but IMO we ADHDers deserve more than that – we deserve acceptance. We need to be listened to, we need realistic accommodations, and help. We need to start moving toward ADHD Pride Month. People should be able to feel proud of being ADHDers, because the alternative is shame.

For 31 days I will be writing every day on being an ADHDer using this list of prompts:

ADHD Acceptance Month – Identity Language

ADHD Butterfly Source

Person-first language can get in the garbage

I took a long time to understand this as I have dyslexia and I struggle to understand new grammatical concepts. But I had it explained to me visually and then it made sense.

I am not a person “with ADHD”. It’s not an accessory. It’s not something that I take with me. It’s a core part of my identity therefore it should be identity first. It will always define who I am in some way – if you split the ADHD from who I am through a “cure”, I wouldn’t be me.

I am an ADHDer or I am an ADHD person.

My favourite term for ADHD is the Reo Māori kupu:

Aroreretini – meaning ‘attention goes to many things’ [Pronunciation here]

This is more accurately a representation of how I experience being an Aroreretini tangata(person).

Let’s break down ADHD

I have a selective and powerful attention (I think Monotropism is a great way to explain this) and it’s on the most interesting stimulus – with intrusions that change that focus. Even mind wandering / rumination / daydreaming is an excess of attention in a different area. I often have too much attention with less neurotypical filtering, not a deficit.

So it becomes AHD…

BUT I am also not hyperactive – so I have Attention Disorder. AD.

BUT I don’t think it’s a disorder so I just have an attention difference.

I am not downplaying the challenges of this difference – I have had a rough as hell life due to not being understood in multiple ways. I just don’t want to pathologize myself for having a different way of perceiving and interpreting the world.

Daily blog challenge

October is here usually known as ‘ADHD Awareness Month’ – but IMO we ADHDers deserve more than that – we deserve acceptance. We need to be listened to, we need realistic accommodations, and help. We need to start moving toward ADHD Pride Month. People should be able to feel proud of being ADHDers, because the alternative is shame.

For 31 days I will be writing every day on being an ADHDer using this list of prompts:

ADHD Acceptance Month – Favourite ADHD Book

ADHD Butterfly Source

Confession time

I haven’t read all the ADHD books. Mainly as I like to read personal accounts that have advice in them, and that genre of books is very small in the ADHD community. There are some books I read and I disliked them a lot – so I won’t mention them.

I know a ton about ADHD but it comes from reading scientific papers, people’s blogs, and personal accounts wherever I can. The main reason I don’t have many recommendations is that I have kinda built my own advice out of the parts of all the other books, and sources where I gained information about ADHD that I have read in my life.

There is one book I recommend (although it does have a UK NHS focus for some stuff):

ADHD: An A to Z by Leanne Maskell

I am waiting patiently for a couple of awesome books that are due out soon by Dani Donovan, Pina (ADHD_Alien), and Jesse J Anderson. I find their comics, threads, and content extremely useful, so I am incredibly glad they have published works of them coming out.

Aside from that I really do recommend this book for cleaning:

Everything You Need To Completely Clean with ADHD by Rene Brooks (I also recommend all the others she has on her site).

Daily blog challenge

October is here usually known as ‘ADHD Awareness Month’ – but IMO we ADHDers deserve more than that – we deserve acceptance. We need to be listened to, we need realistic accommodations, and help. We need to start moving toward ADHD Pride Month. People should be able to feel proud of being ADHDers, because the alternative is shame.

For 31 days I will be writing every day on being an ADHDer using this list of prompts: