Classical Medicine & Mental Health

DISCLAIMER: NONE OF THIS IS MEDICAL ADVICE – IT’S TO BE TAKEN AS IS. DO NOT DO ANYTHING WITHOUT TALKING TO A MEDICAL PROFESSIONAL FIRST.

Just a few weeks ago I was trying to refute the idea that those who have mental health issues should be discouraged from Stoic philosophy – which I saw as an interpretation – turns out that this was largely due to this author’s biased interpretation of ideas – you can adapt philosophy. Arguing about one correct interpretation of philosophy is a terrible concept anyway – you can make it meaningful to you.

Sometimes the internet takes to you weird places…

I came across a name – Caelius Aurelianus (believed to be of African descent) – a 5th Century physician and writer on medical topics who wrote a book called ‘On Acute Diseases, On Chronic Diseases’. The book itself contains what is thought to be a translation of previous works by the Greek physician Soranus of Ephesus – who was alive during the 1st/2nd Century AD. It was translated in 1950 by someone called Israel Edward Drabkin.

Some things were discovered earlier…

The book contains a number of amazing things that are not acknowledged in most medical history. I want to first take a look at two conditions that are ascribed to being discovered by physicians far later in life – Asthma and Sleep Paralysis.

Asthma

Most people believe that Sir William Osler considered by many to be the the ‘father of modern medicine’ to have been the first to describe Asthma with clinical accuracy – I’d like to point out – this is wrong.

Men are more subject to attacks of asthma than are women; old men and boys more so than young men, and soft bodies more so than those of a hardy nature. The attacks come more often in the winter and at night than in the summer and during the day. In some cases asthma arises spontaneously, in others it supervenes upon a previous disease, often coming after a severe chill.

In asthma there is difficulty in breathing, frequently of short rather than long duration, and a choking sensation in the chest together with a feeling of heaviness and burning heat.

The disease is marked by alternate periods of attack and remission. The latter intervals are sometimes completely free and clear of symptoms of disease, but at other times are marred by the presence of traces of the ailment. That is, even in the intervals of remission the patient may still suffer from shortness of breath, a condition which becomes quite obvious when he does any climbing or hurrying or is distressed by indigestion, fatigued by venery, or troubled by cold, dust, or smoke.

Asthma is a disease involving a state of stricture.

‘On Acute Diseases, On Chronic Diseases’ – Caelius Aurelianus

Compare this description to the one given by Sir William Osler.

Spasm of the bronchial muscles

Swelling of the bronchial mucous membrane

A special form of inflammation of the smaller bronchioles

Having many resemblances to hay fever

The affection running in families.

Often beginning in childhood and sometimes lasting into old age.

Bizarre and extraordinary variety of circumstances which at times induce a paroxysm:

Sputum is distinctive: rounded gelatinous masses (“perles“) and Curschmann spirals & octahedral crystals of Leyden

A Brief History of Asthma and Its Mechanisms to Modern Concepts of Disease Pathogenesis

The language used to identify the organs is more precise but the mechanism of action is exactly the same.

Incubus (Sleep Paralysis)

Again this is attributed to someone in the 16th Century for clinical presentation – but it’s described here in perfect clinical accuracy.

The condition cannot be called a disease unless it occurs continually and with bodily discomfort. But nightmare when it is a disease is a forerunner of epilepsy and Soranus in his work On Causes, which he calls Aetiologumena has shown abundantly that the incubus is not a god or a demigod or Cupid.

Those who suffer from the disease of nightmare show extreme sluggishness of bodily movement and stiffness. And particularly during the dream there is a feeling of heaviness and oppression and a sort of choking. They imagine that someone has suddenly attacked them and stunned their senses, exhausting them and preventing outcry.

From the feeling of heaviness we gather that the disease involves a state of stricture; from the length of time it lasts we consider it a chronic disease.

‘On Acute Diseases, On Chronic Diseases’ – Caelius Aurelianus

I’ve had sleep paralysis – it’s terrifying. I do not have a visual mind’s eye (aphantasia) – so I wonder if this is the reason why I never see visions of a demon, but I can understand the concept of feeling like something is standing on your chest.

There’s nothing more terrifying than waking and you do not know how to tell your lungs to take in air – it’s absolutely indescribable. The brief amount of time it usually takes you are in pure terror – how do you turn on an automatic process? One you never think about.

On My Autism…

I think my Autism is described here across two separate conditions – Epilepsy and Mania. I’ll explain…

Sensory Sensitivity and Epilepsy

I have extremely high sensitive sensitivity – when I lived in cold housing I was affected by dust, asthma, tinnitus, sometimes I get visual hallucinations as described here when extremely sleep deprived – as do most people. Here it’s described someone who is on the verge of an epileptic attack – what’s interesting to me is that these have been the conditions that preceded my sleep paralysis in a few cases.

Those who are on the verge of an attack of epilepsy show symptoms in common with those of other diseases originating in the membrane of the brain, e.g., heaviness of the head and dizziness, head noises, sympathetic pain in the back of the head, eyes staring, ringing in the ears or impairment of hearing, and blurring of vision accompanied by dizziness. Certain objects may appear as if dangling before the eyes, like the sparkling points in marble (Greek amarygmata or marmarygae) or spiders’ webs or thin clouds or small winged animals, such as gnats. And patients see sparks flashing or rings of fire spinning before their eyes. The tongue feels rigid, the muscles quiver, and there is pain in the back between the shoulder blades. And patients see sparks flashing or rings of fire spinning before their eyes.

There are also the following symptoms: stiffness of the throat, constant precordial distention, yawning, sneezing, flow of saliva, distaste for food or else an uncontrolled desire for it, continued wakefulness or else excessive and unprofitable sleep, troubled dreams, difficulty in digesting food, … mind unsettled and troubled, a tendency to become angry for no good reason, forgetfulness of what has just recently taken place, and a susceptibility to anything that blurs the vision.

As the disease emerges and takes hold of the body, the patient is bereft of his senses. As the attack gains full sway, in some cases the patient remains completely immobile; his face is pale and lowered, respiration slow, and pulse large; he is overcome as if by a deep sleep.

‘On Acute Diseases, On Chronic Diseases’ – Caelius Aurelianus

This is almost text book signs also that I am about to have an Autistic meltdown and this is what happens to me a lot of the time – I literally shut down.

Epilepsy is one of the highest co-occurring diagnoses for Autistic people, it’s very hard for me not to believe that epilepsy is the more advanced form of my sensory sensitivity – when the brain is overly connected between regions things can overload me. I actually do have mini-seizures for certain things – sometimes my mind wipes if a noise is too loud – I do not collapse or seize but my mind goes completely blank as if I have been briefly concussed.

What also points this out to me is this particular thing they mention for making sure you do not trigger a further attack:

Thereafter many of the previously mentioned symptoms which indicate the onset of the disease, e.g., dizziness and dimness of vision, may occur when the patient does something while bending forward, or watches a ship or a swiftly rotating potter’s wheel, gazes at flowing water, looks up a great height or a cliff, hears a loud noise or shout, suffers a severe chill, takes too hot a bath, or smells strong odors whether pleasant or unpleasant, such as that of burning storax, frankincense, bdellium, lignite, bitumen, or stag’s horn.

‘On Acute Diseases, On Chronic Diseases’ – Caelius Aurelianus

Mania

Sometimes it arises from hidden causes, at other times from observable causes, such as exposure to intense heat, the taking of severe cold, indigestion, frequent and uncontrolled drunkenness (Greek craepalè), continual sleeplessness, excesses of venery, anger, grief, anxiety, or superstitious fear, a shock or blow, intense straining of the senses and the mind in study, business, or other ambitious pursuits, the drinking of drugs, especially those intended to excite love (Greek philtropota), the removal of long-standing hemorrhoids or varices, and, finally, the suppression of the menses in women.

Before the disease emerges, those who are not attacked suddenly by it have the same symptoms as persons on the verge of epilepsy or of apoplexy. These signs may be found, then, in what has already been said. But some seek to distinguish the antecedent signs of these diseases by listing specific signs for each of them in addition to the general signs common to all. Thus deep sleep, they say, is indicative of the coming of epilepsy; light and short sleep, on the other hand, of mania. So, too, they take it as an indication that mania is imminent when a person in a state of anger suffers congestion of the head and believes that he has gone mad or, again, when such a person is overcome by speechlessness resulting from groundless fear.

‘On Acute Diseases, On Chronic Diseases’ – Caelius Aurelianus

I… These are the things that cause my Autistic meltdowns. These are the things I am constantly balancing. Here Caelius Aurelianus talks about how ‘Mania’ presents – I want you to think about modern descriptions of Autism, Schizophrenia, and Autistic Burnout.

Now when the disease of mania emerges into the open, there is impairment of reason unaccompanied by fever; this impairment of reason in some cases is severe, in others mild; it differs in the various cases its outward form and appearance, though its nature and character are the same. For, when mania lays hold to the mind, it manifests itself now in anger, now in merriment, now in sadness or futility, and now, as some relate, in an overpowering fear of things which are quite harmless. Thus the patient will be afraid of caves or will be obsessed by the fear of a falling into a ditch or will dread other things which may for some reason inspire fear.

‘On Acute Diseases, On Chronic Diseases’ – Caelius Aurelianus

So these are things that are described to treat this condition…

As for the treatment, we hold that measures should be taken similar to those employed in epilepsy. Thus, to begin with, have the patient lie in a moderately light and warm room. The room should be perfectly quiet, unadorned by paintings, not lighted by low windows, and on the ground floor rather than on the upper stories, for victims of mania have often jumped out of windows. And the bed should be firmly fastened down. It should face away from the entrance to the room so that the patient will not see those who enter. In this way the danger of exciting and aggravating his madness by letting him see many different faces will be avoided. And the bedclothes should be soft.

Do not permit many people, especially strangers, to enter the room. And instruct the servants to correct the patient’s aberrations while giving them a sympathetic hearing. That is, have the servants, on the one hand, avoid the mistake of agreeing with everything the patient says, corroborating all his fantasies, and thus increasing his mania; and, on the other hand, have them avoid the mistake of objecting to everything he says and thus aggravating the severity of the attack. Let them rather at times lead the patient on by yielding to him and agreeing with him, and at other times indirectly correct his illusions by pointing out the truth. And if the patient begins to get out of bed and cannot easily be restrained, or is distressed especially because of loneliness, use a large number of servants and have them covertly restrain him by massaging his limbs; in this way they will avoid upsetting him.

If the patient is wakeful, prescribe passive exercise, first in a hammock and then in a sedan chair. The rapid dripping of water may be employed to induce sleep, for under the influence of its sound patients often fall asleep. And heat should then be applied to the eyes with warm sponges, and the stiffness of the lids relaxed; for the beneficial effects of this treatment will pass through the eyes to the membranes of the brain.

And then prescribe passive exercise, first in a sedan chair and then in a cart drawn by hand. When the patient’s body has gained strength, prescribe walking and also vocal exercise, as required by the case. Thus have the patient read aloud even from texts that are marred by false statements. In this way he will exercise his mind more thoroughly. And for the same reason he should also be kept busy answering questions. This will enable us both to detect malingering and to obtain the information we require.

Then let him relax, giving him reading that is easy to understand; injury due to overexertion will thus be avoided. For if these mental exercises overtax the patient’s strength, they are no less harmful than passive exercise carried to excess.

And so after the reading let him see a stage performance. A mime is suitable if the patient’s madness has manifested itself in dejection; on the other hand, a composition depicting sadness or tragic terror is suitable in cases of madness which involve playful childishness. For the particular characteristic of a case of mental disturbance must be corrected by emphasizing the opposite quality, so that the mental condition, too, may attain the balanced state of health.

And as the treatment proceeds, have the patient deliver discourses or speeches, as far as his ability and strength permit. And in this case the speeches should all be arranged in the same way, the introduction to be delivered with a gentle voice, the narrative portions and proof more loudly and intensely, and the conclusion, again, in a subdued and kindly manner. This is in accordance with the precepts of those who have written on vocal exercise (Greek anaphótièsis). An audience should be present, consisting of persons familiar to the patient; by according the speech favorable attention and praise, they will help relax the speaker’s mind. And, in fact, any pleasant bodily exercise promotes the general health.

Now if he is unacquainted with literature, give him problems appropriate to his particular craft, e.g., agricultural problems if he is a farmer, problems in navigation if he is a pilot. And if he is without any skill whatever, give him questions on commonplace matters, or let him play checkers. Such a game can exercise his mind, particularly if he plays with a more experienced opponent.

When the patient has had his walk and rest, he should be carefully anointed. At first, massage him only slightly and simply. But when his recovery has become more obvious, massage him behind the shoulders and the neck with a downward motion, using a stronger stroke than before; this is the moderate rubdown which the Greeks call cataspasmos. In the final stage also massage the head; and when the head is relieved, prescribe bathing.

Then, if the patient shows no new symptoms and has accustomed himself to the various parts of his regimen, change of climate should be prescribed. And if he is willing to hear discussions of philosophers, he should be afforded the opportunity. For by their words philosophers help to banish fear, sorrow , and wrath, and in so doing make no small contribution to the health of the body.

But if the disease persists and becomes chronic, being marked by attacks alternating with intervals of remission, relieve the attacks, using the same remedies as those prescribed above for the initial attack of mania. But in the intervals of remission, prescribe, first, the restorative series of treatments including various types of passive exercise, vocal exercise arranged under the supervision of a musician, walking, passive exercise, varied food, and the like.

Again, in restoring the patient’s health, the services of a trainer should be employed. Use should also be made of natural waters, such as alkaline springs, particularly those free from any pungent odor which might injure the membranes o f the brain. A trip abroad by land or sea and various mental diversions are helpful in affording relaxation of the mind.

‘On Acute Diseases, On Chronic Diseases’ – Caelius Aurelianus

I don’t know how to tell you that all of these things help me with my Autistic difficulties… but they do – every one of these things is beneficial.

One of the assertions is that ‘Mania’ is caused by stricture of the body – massage is recommended to help with this – it’s been shown in widespread scientific trials to be beneficial in reducing anxiety and depression.

Acupuncture is also recommended and has some reasonable evidence in science in meta-analyses to be beneficial for anxiety, depression, and a number of auto-immune diseases.

Maybe the answers I was looking for are not in pharmaceuticals for me. Maybe they’ve been here all along – but people want to be known as the ones who discover stuff and most of these things have been frowned upon by the modern medical establishment.

My Mental Health ‘Awareness’

I wonder how easy it would be to pathologise anyone who is stigmatised in some way – and has been traumatised. This has been on my mind a lot lately – I am going for my second diagnosis for Autism because I need it for some research reasons. [My first one didn’t count despite seeing a psychiatrist and psychologist for ~12 hours – as they did not legally have the authority to diagnose me in NZ].

I’ve been wondering about how much of a predicament it leaves me in – you see it’s a been a trap being diagnosed with mental health condition of any sort – in the way it’s practiced now, and their assumptions have isolated me inside my own brain at times. I was often bound by the circumstances of life – but these were rarely considered in my diagnosis.

I am not actually a black and white thinker – if you ever question me about something and I am not certain of the answer I will admit I am unsure. I used appeal to authority all the time to explain things – because I guess having external certainty was often more comforting than living in doubt. I’d been taught so early that my brain was “lying” to me through gaslighting – so I outsourced control.

I have been trying to switch to using first person language when talking about any of my mental health – the reason being is that people often will read that I am generalising that all people have the thing I am talking about – self-identity has usually played a role in this reaction. I understand the reaction but it’s based on faulty logic.

Here’s the problem with using first person language – it by definition makes me have a narcissistic trait – self obsession. I have empathy for others – and other people relate to the words that I am saying – but using language in this way makes me seem self obsessed – the irony of this is that I use first person language because I don’t want to hurt others.

This is my problem with getting an Autism diagnosis. Once I am diagnosed my morality is a character flaw due to a resistance to social hierarchy and hatred of self reward over cooperation. My opposition to authority is a disorder. My accidental hurting of people through careless error or lack of understanding of innumerable social rules that change with context could be perceived as anti-social personality disorder. The fact I don’t like doing some tasks when told even if I had previously wanted to do them at times “pathological demand avoidance”.

I often refer to my brain and my consciousness as two separate entities – even though I know these are the same thing, technically under current understanding this is a delusion. I’ve had to craft a mask made out of many parts of other people’s identities before this – I’ve never considered this broken reflection of what society wanted me to be distinct entities – and yet you could argue that I was “different people” at different times.

I’ve had hallucinations in the past when sleep deprived, and I’ve had some bad theories about stuff when younger that could be classified as delusions. I thought I saw poltergeist as a kid – I knew they were not likely real once I learned of fiction but I was making inferences based on incomplete data.

I often have sometimes quite wild theories that I’d love to test in health – but I am scared they think I am certain of things. Sometimes I get scared that if I have enough confidence in asserting a theory I have basis for – they may consider me schizophrenic before hearing out my reasoning for thinking something.

If I had actually used my full vocabulary too much and I had mood swings where I couldn’t identify the cause – because I’d been taught to ignore the cause in the past, while also getting seasonal depression, aren’t these technically traits of bipolar disorder?

I am a sensitive person – years of trauma have caused me to sometimes react to people due to this rejection sensitivity in extreme ways. I used to worry that everyone would one day abandon me because I had been abandoned so often – once I got real friends this went away. However before this could I have been diagnosed with borderline personality disorder?

I am anxious about going out into the world because I’ve had so many bad experiences. Every bit of anxiety I have ever had has had a rational explanation to my brain – even when the fear was irrational due to a lack of understanding of the reason why it was irrational. And a lot of it was due to the environmental sensory stuff I had to deal with. I don’t consider myself to be an anxious person – I am just vigilant against previous hurt.

I am depressed at times because the world is depressing. There’s so much wrong and people just go about their lives, but I am depressed person if I acknowledge that I am sad on an existential level about things. There’s an aching dread in my mind if I indulge it. I do not consider myself depressed though – I am just experiencing rough times.

Don’t get me wrong – labels are important – but the idea that some of these are permanent conditions is the thing that I get caught up on. I wonder how much the self fulfilling prophecy came into play with my diagnoses.

I didn’t fit the labels I was given and my propensity to speak up against authority when I knew it was wrong might have allowed me to escape the labels I was given – rather the ones that made sense. For so long I assumed that those diagnosing me were experts with sacred knowledge and not just people who got a standardised education.

I spent a long time researching everything about myself in order to make sure I was correct and I had to self diagnose every mental difference I have first – ADHD, Aphantasia, Autism, cPTSD, Dyscalculia, Dysgraphia, OCD.

These labels were based on more observational evidence than I could ever give in a small appointment to get them assessed – and based on far more than just simple tests. I considered everything – I used process of elimination to work out what I did have and did believe.

I spent so long not questioning a person in a coat with a few modules of understanding of my brain – and I stopped listening to the actual authority on me – myself. This nearly killed me. I ignored the logic of my brain for an appeal to authority.

The thing that also makes me mad is that medicines didn’t help me except in one case – but I thought they must – it cost me over 10 years of my life thinking that the side effects I gained were part of my existing issues, when in fact they were the result of the medicines I was on.

Therapy didn’t help me except for a few key lessons – philosophy helped me more. I didn’t get better through being diagnosed – I got better through understanding my differences, and accepting the things I cannot change, those that I can – but only with correct knowledge of my differences, which I mainly learned outside of science anecdotally from others, till I could confirm them in existing science.

It’s odd that they have something called the “Just World Theory” that states that things are justified because the world is just – even when provided evidence to the contrary – but this is not a delusion?

I guess what I am trying to say here is:

Happy Mental Health Awareness Month.

Reflections on Color the Spectrum & My Future Autistic Advocacy

I hate NEXT for Autism

Lets be perfectly clear about one thing – I have no trust of any organisation that does not centre or allow fundraising exclusively to be used by and for Autistic people based on their wants. I also cannot trust an organisation that intentionally tried to gaslight Autistic people and abused us about raising issues with their organisations support.

I wish this event had not happened – I wish that Mark Rober had done research – wishing all of this didn’t change it’s inevitability.

I was brought on after the initial requests had been made – at no point were any of the advocates I interacted with happy about the veil of forced secrecy that was thrust upon us – but we were trying to get the most benefit out of otherwise terrible circumstances.

None of us thought we were the voice of the community. All of us wanted to canvass more widely – this was not allowed.

There was no communication between NEXT and myself at any point – and I will not communicate with them personally – I am independent – and I will ethically never communicate with an organisation that has done so much harm.

The best thing NEXT for Autism could do in my opinion after giving Autistic led charities and mutual aid funds ALL the money from the event is to cease to exist.

The things I liked about Color The Spectrum

I could focus on the negative things but I will talk about some of the things that made it in that were excellent:

  • An Autistic woman who was late diagnosed was one of the first presentations of Autistic people we saw – she was in a work program that actually looked amazing and person centred and respected autonomy – it wasn’t training social skills.
  • A diverse range of Autistic adults were shown advocating for themselves – there was better than expected representation given the constraints of the event from my understanding.
  • Mark Rober acknowledged multiple times that Autistic adults have been trying to be heard and have been repeatedly left out of the conversation – (He still needs to make a proper apology in my opinion). I do not personally doubt that Mark and many members of the production team were trying their absolute hardest to correct his error – but the schedule was locked in and this was days out – cancellation was not an option for probably legal reasons – although this is speculation on my part.
  • Every single non-prerecorded piece had people involved use “Autistic people”, not people with Autism – as per the requests made by advocates. Mark Rober specifically mentioned why.
  • Every single letter that Mark’s son wrote to a donor said thanks for helping “autistic people” like me. Identity first language.
  • It’s clear they had to make schedule changes to their previously planned program as some guests who were meant to feature did not appear – I believe this was to allow for the showing of more actually Autistic adults per the request made by advocates.
  • There was a live pledge to give a 3rd of this money to Autistic led charities and organisations as per the advocates request.
  • A nonspeaking Autistic advocate Trevor Byrd was shown talking about the importance of AAC
  • They tried to let people know that they might be Autistic using a video of Samdy Sam’s that talks about lesser known things about Autistic people.
  • They put in more videos of actually Autistic people than they told us that they were going to from my understanding.

The rest of it was an absolute nightmare – for one example – the section with Jack Black eating is one of the most uneducated about Autistic sensory sensitivity things that they could have done. I had to mute it because I have misophonia and hyperacusis.

This was the lowest bar to clear

I cried still – it was meaningful in symbolism that someone actually heard.

I lost a major battle with Kickstarter this year so there was some need to see some change as I have been so depressed about the state of everything to do with Autism. I have had failure after failure, after failure, after failure.

Having a tiny glimmer of change is the first step.

I know this was tiny – I know it doesn’t make long term change – but for once our voices were actually heard in some way and not just ignored – now that gap has been opened I am going to be screaming into it.

I’m demanding more in future

I’m sick of being the allistic version of reasonable – while I believed that what I did in this specific circumstance was the lesser of two evils – it was still an evil. One that I will no longer abide.

ABA is torture, even new ABA which has the same principle. Any version of therapy that denies autonomy of Autistic people is unethical and needs to be stopped immediately.

Nearly all Autistic research needs to be thrown out – we need Autistic people to be present and with a wide inclusive net to heighten understanding of what Autism actually is for those from more marginalized groups far more.

Black Autistics and other people of color as well as Indigenous Autistics need support as a priority – this is an absolute bottom line – they need more acceptance, and white Autistic people need to make sure that these groups are represented or ideally they lead organisations if they wish to.

We need Autistic Emergency Funds to help people – not grants for programs – actual material support – so many of us are relying on mutual aid just to live – this is a catastrophic failure of most governments to actually foster and grow our capacity to contribute to society – we have so much to offer if you just help us with the things we need help with – and understand that we all have spikey skill sets.

Autistic voices need to be heard. ESPECIALLY NONSPEAKING AUTISTICS – we need to be accepted and we need proper support for the stuff we actually want help with.

Masking is killing us – there’s multiple studies that show the stressful effects of hiding our Autistic behaviour which causes massive and prolonged negative mental health effects – and suicide rates for those of us deemed “high-functioning” are 3.7x higher than other mental health concerns – 9x higher if a woman or gender minority.

This was an ethical dilemma that had no winning outcome – I undoubtedly got this wrong

I hated this. I am appreciative I was able to speak about growing inclusion, and that I was brought on – but the situation was awful – there was no way to get what we actually needed which was the event stopping.

I would like to thank all the other advocates for helping me share the anxiety strain of this nightmare – things were often heated as you can expect in this environment but there was always a level of respect even when we had disagreements.

I’d like to thank everyone who shouted or abused NEXT for Autism – you have my support completely. If you do not trust me I understand completely – I had to make a compromise that was always going to be awful.

I will continue advocating. I will continue shouting the truth about Autism – just the fact that ‘Autism Awareness Month’ is over doesn’t mean that my advocacy stops. I don’t cease existing as an Autistic person on their time schedule – and I am always fighting for change in New Zealand, in science, basically anywhere I can do so safely.

Thank you for reading this if you did and I hope if I have let you down now – I can show you better things with less compromising in the future.

Nothing about us without us!

Other Advocates Statements

autistictic – FOLLOW-UP REGARDING COLOR THE SPECTRUM AND NEXT FOR AUTISM

AutSciPerson – My Personal Reflections on Color the Spectrum and Autistic Advocacy

Denial of my Autonomy – The Price of Masking

CW / TW // depression, anxiety, self-hate, suicide ideation, suicide attempt, angry ranting.

This song sums up how my life has been

Before my diagnosis this year at thirty-seven I was only ever somewhat authentic me at certain times – the rest of my life was lived entirely based on others expectations of me – I am not a perfectionist – I am a ‘judgementaphobe’. I didn’t learn helplessness – I was explicitly taught it.

I am processing a lifetime of trauma I just simply hid away – never allowing myself to acknowledge the pain I was in. I did that – I kept doing it… I made it 36 years before I nearly died – after a suicide attempt.

I spent six months in the critical mental health system after calling the police on myself multiple times as I was close to the brink. I was going through intense Autistic Burnout. I was stuck in an inescapable void – my mind was trapped in a pattern of self hatred, I thought I was a sociopath because I hurt people without knowing why. I had to force a diagnosis because “labels aren’t important” – but this label was, this label saved my life.

I have spent my life trying to be a good person. I have constant evidence that I am – I do things constantly that prove this – and yet I am oblivious to their existence in the second I make an honest mistake. I hurt someone I care about without knowing why and often they wouldn’t explain to me, and if they did, they wouldn’t accept my sincere apology.

People take on harm from general things I say in order to make their trauma match my statement – as though I am not allowed to be upset at the trauma things have caused me. I never mentioned them. They chose to take on that hurt. I know I can’t please everyone and this expectation is killing me because I still have it for myself – when they decide to make an argument I haven’t made and attack me for it – I go straight into OCD spirals that destroy me for the rest of the day.

I never specifically name people unless complimenting them as a general rule, unless they have not repent on their treatment of me. In which case – name them – holding esteemed people liable for the harm they cause is a civic duty – their reputation is a lie if it’s built on a foundation of sand and hate.

People always want to read malice in my actions. Everything I’ve ever done in my life has been trying not to harm people. That’s left me in bad relationships because I didn’t want to hurt people. I gave up everything of myself at times terrified to hurt other people because I’ve done it so often while learning to be the “perfect” person that others expected – an endless cycle of reinventing myself to try and get it right… to be ok for you…

My needs were not important. My views were discounted. My pain constant. My acceptance of it – never there. My morality weaponised against me. My sticking up for myself perceived as troubled behaviour. My self-advocacy constantly derided.

I wasn’t diagnosed. But I still got to experience Autistic life. My Autism didn’t appear during my diagnosis – it’s always been a part of me – it should have been a gift, a unique way of seeing the world, instead it was a curse – a blemish that marked me as an other.

I was put on a myriad of mental health medicines that are not recommended for Autistic people, and large scale investigations by the Cochrane reviews have found most mental health medications for most Autistic people completely unsuitable. I lost 10 years of my life suffering the varying effects of SSRI/SNRI medications where I was told to persist through the side effects to see the benefit – the benefit never came.

I’m a flawed person, like every other person I know in my life. I have had significant additional difficulty settings on existing. So many things in my life I attributed to personal failings – things like Dysgraphia, Dyscalculia, ADHD and OCD. I was never as good as I knew I could be. I never knew why I was inconsistent – and the lack of knowledge of my difference caused me to internalise every failing.

I was hated for the person I was, so I tried to become someone else – I masked everything about me that I considered to be me – I tried never to sound smart, I tried never to speak out against stuff I knew was wrong, I had to pretend to people who I knew wished me harm that I respected them while they gaslight and abused me.

I didn’t listen. The person I wanted to be was always here – there was a voice in my head I didn’t listen to. I was brainwashed out of trusting myself. I hated me – actually hated me – I felt like any happiness I ever got was unearned.

Every time I achieved anything I would wait for the failure – the crushing point at which I know I am no longer good – to remind myself I am the burden people expect. The damaged person – the lost cause.

If only I had learned to listen to those who wished me no harm, those who believed in me, those who understood that no one truly understood me. The one person I had in my life that tried to teach me this lesson and showed consistent love – my Dad – has now returned to nature – I never got to thank him.

People my whole life have bullied, beaten, attempts have been made by people extremely close to me to kill me. People have sexually assaulted me, manipulated me, lied to me, got me to act against my own implicit morality, and made me believe that I am the burden that I was made to be – my family, my friends, my workmates, my teachers, my bosses, my partners…

People barely respected my boundaries or took me at my word – that’s not something I was allowed. I gave up my boundaries at a young age because that way people liked me. Better to lie about who I am and fit in than be alone – but the cost of lying about who I am was doing more harm than telling the truth – I never wanted to be a toxic human, but I was surrounded by them – they constantly convinced me that I had to be awful.

I get the lifelong scarring of my memory – it never forgets the things I’ve done wrong. I don’t want to either – it keeps me humble.

I wonder though – maybe I wouldn’t have anhedonia (inability to feel positive emotions), if I actually had been told that my way of expressing happiness had been allowed, not judged.

People in my life keep trying to cure me – I don’t need your solutions, I need your acceptance. I am ok with my challenges and I am working on them – I don’t need you to constantly remind me that you perceive me to be suffering far more than I am. The idea that my life is hard I can accept – the fact it seems to make other people upset is the part I can’t take.

I feel so enraged that this was my life. Thirty seven years of near constant wreckage across different domains at different times.

I want to remove this mask, to tear it from my body – to become the real me. It’s only an unattainable goal now – the real me is gone – congratulations society! – it won that battle. I lost my autonomy for long enough that I will never get to be who I was meant to be. I will always be lost in my consciousness – trying to make sure that I am accepted – for the me you want to see.

Don’t you ever speak about behaviour therapy in a positive light to me – behaviour therapy taught me I didn’t matter – and you’re perpetuating that abuse. It retraumatises me in ways you don’t understand – you will never know unless you’ve had this experience too.

Give Autistic people autonomy and the tools to communicate – trust them – love them – don’t build a cage around their mind and throw away the key to this prison.

It’s nearly always hell here – the best I can ever do for me is to try to make sure that this doesn’t happen to other people. It’s the only salvageable thing from this experience.

I’ll always be a tourist in my own life.

Autistic Acceptance Month – Acceptance Means…

The artist for the above image is @Kayas_Kosmos.

Acceptance Means…

We have an April where we celebrate being Autistic, it becomes a month of Autistic Pride.

Watching this 5 minute video – to understand that all Autistic people want to communicate. They often can’t – they need to be respected and believed – appearance and cognitive ability are not the same.

That Autistic people are listened to, that you hear us when we say things are abuse, and you stop trying to make us allistic.

Celebrities and other big names feeling comfortable to identify as Autistic, without any fear of backlash.

Getting rid of Theory of Mind of Autism which was built on faulty premises – and is societally harmful for Autistic people.

Acknowledging that ALL Autistic people have autonomy, they need support though to live.

Letting Autistic people decide their fate.

Listening to our words – not our tone.

Treating us no differently than you would treat other people, while acknowledging we may communicate differently.

That I blog for me each day during this month – that I don’t have to spend a month focusing on how stuff negatively affects us because that’s what the world wants us to focus on.

End of the Series – Recap of April for me

Thank you for reading if you did.

The Good

I missed 2/30 days but made up the blogs. I didn’t think this would happen, but it did.

I also wrote 10 other articles, and an article for The Spinoff.

I completed the first module of my ADHD coaching course.

I gained a whole bunch of new followers – who will be able to share more acceptance of Autistic people.

I got to talk with other Advocates to try and assist with getting a charity to acknowledge the harm they are causing.

The Bad

I don’t know if that last good thing is actually a good thing. I have low trust.

I didn’t sleep eleven nights in April due to cPTSD triggers mainly from ableism.

I had eight meltdowns that were significant enough to cause me harm.

I made a few mistakes generalising and hurt people I didn’t intend to.

I went to hospital for a mild concussion.

I felt bad a lot for being Autistic – when I should just feel proud.

There was a moment once where actual serious suicide ideation came back – the type I thought was gone.

Just had to take so many set backs this month – and one in particular burned me after not sleeping for 30 hours, and was something I was actually looking forward to a lot. I thought I had a chance for real change at altering the path of Autistic research, but it was again – not possible – the rules changed.

Daily blog challenge

I wrote a blog every day on being Autistic for April using this list of prompts:

Alt-Text Format with links to other blogs – Autistic Acceptance Month – 30 Days of Acceptance and appreciation:

Autistic Acceptance Month – Famous Autistics

The artist for the above image is @Kayas_Kosmos.

A peculiar prompt

Would “most allistic accepted” be a better way of putting this?

Fame is a very weird construct. It tends to imply that one person is worth more than another person, and that’s a concept I do not agree with. I mean there are people who are successful Autistic people – but again what measure are we using here ? One that is based on hierarchy. Many who are famous now have done awful things, and gotten away with it – so why would I want a measure that doesn’t account for this?

Some leading CEOs might be Autistic, but they do not care for equity – and this I cannot abide personally.

My view on fame can be summed up here by Marcus Aurelius in Meditations:

Consider the lives led once by others, long ago, the lives to be led by others after you, the lives led even now, in foreign lands. How many people don’t even know your name. How many will soon have forgotten it. How many offer you praise now—and tomorrow, perhaps, contempt. That to be remembered is worthless. Like fame. Like everything.

Marcus Aurelius – Meditations

I hope you can see the paradox in one of the most famous Stoic philosophers in history detesting the concept of fame. His wisdom was indeed based on his interactions with many of his teachers who were not famous, they made no place in history books – but they were “famous” to him. Fame often excludes the team around that person – the people who helped them attain it. It’s by definition a measure of exclusion – and no one is famous without those who adore them.

I think my aversion to fame comes out of the harm that ‘famous’ scientists have done to me over the years – those who still fail to account for their errors – it gives a hubris that I dislike in people. I never want to be excessively proud or externally motivated again – because it’s done so much damage. I’ll accept compliments from strangers and sometimes I need them. But I have also learned to accept that I need to discount compliments from others, as much as I need to discount criticism from those who wish me harm.

I have to be self centred – but not in the way people expect – I care about others implicitly, my life is lived based on contributing back to the community.

The most important Autistics to me currently are the ones who are advancing Autistic science – the ones who are actively trying to dismantle ableism and get to the truth of Autism. There are a lot to name here – and I know in a few cases these people absolutely abhor being named for recognition.

Fame also means as well that we are perpetuating ableism – I can guarantee you that most of the famous Autistics you can think of have been profoundly accepted and had privilege that others have not. There are a number of people who I think are Autistic who are famous – but armchair diagnosis has the potential to be extremely harmful and is highly unethical.

Paradoxically I think some of these people might struggle less if they knew and benefit from being told. But the first principle in any situation should be “First do no harm…”

Being famous, and being a person of good morals are two very different things – I tend to always prefer those who fall in the second category – regardless of their status.

Daily blog challenge

I will be writing every day on being Autistic for April using this list of prompts:

Alt-Text Format with links to other blogs – Autistic Acceptance Month – 30 Days of Acceptance and appreciation:

An Open Letter to the Autistic Community Regarding Color the Spectrum

Autistic Science Person

A message to the entire Autistic community:

Last week, an Autistic person became aware of Color the Spectrum, a fundraising event for the nonprofit Next for Autism, and the controversy surrounding it. He recognized that there were people he knew who were involved in the event. He reached out to a friend who helped him begin a conversation about what was happening.

Due to this unique access and privilege, these efforts led to a good faith dialogue with Mark Rober. This conversation was then opened to three other advocates and a fourth was added after the meeting.

During this time, we were asked for and agreed to provide some recommendations that could help make this event less harmful to the Autistic community. When responding, our priorities included the messaging, language, and inclusion during the event itself, as well as allocation of some of the funds that would be raised by…

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Autistic Acceptance Month – Dealing with Meltdowns

The artist for the above image is @Kayas_Kosmos.

Dealing with Meltdowns

Write it out or bash my head on a wall? That’s the truth.

How do you control a hurricane inside you? Tips? Cause sometimes I can talk it down to a tornado… Just a tornado of self hate for a few hours, maybe if I am lucky I get to pass out from exhaustion.

That’s my best hope – if I fail – I could end up in the void.

I use a category scale seen here: My Personal Shutdown/Meltdown/Burnout Scale – “Why do I bang my head?”

Daily blog challenge

I will be writing every day on being Autistic for April using this list of prompts:

Alt-Text Format with links to other blogs – Autistic Acceptance Month – 30 Days of Acceptance and appreciation:

Autistic Acceptance Month – Identity language

The artist for the above image is @Kayas_Kosmos.

A few notes: When I first got into advocacy for Autism – it was a minefield and I made a lot of errors – it can be brutal if you are new – there’s no one right way to refer to yourself but the community by a significant margin prefers Identity-First language (e.g. Autistic, Autistic community). Person first language implies that you have autism – as though it’s a disease.

I am Autistic

I do not believe Autism is something that needs to be cured – I need accommodations – not eugenics. Person with autism personally denies me my identity – I am Autistic – with all it’s struggles and it’s benefits – I will always be inseparable from Autism. It’s not just something I “have” – it’s a core part of who I am.

I use capitalised language after finding this passage in ‘Sincerely Your Autistic Child‘.

“You’ll also see some authors capitalize “Autistic” in a similar way that many Deaf or Black people capitalize those terms out of a sense of identity or pride.”

Sincerely Your Autistic Child

I am proud of being Autistic. It’s not something to be ashamed for – if you do any research or read the rest of my blogs you’ll see it’s deeply affected me – I have significant trauma due to being Autistic – but it’s also the thing I love about me the most. I hold these two truths in my head at the same time. It’s caused me the most harm, but that’s due to it not being understood.

A quick note on my other neurodivergence

I consider myself to be an ADHD / OCD / Dyscalculic / Dysgraphic person too. They are core parts of my identity. Every one of these makes navigating the neurotypical world a struggle frequently – but how can I say I don’t want to have these – they are also me too. They come with unique ways of making accommodations for my own way of thinking. I love these too. I wish the standard was for all people to be proud of being different through their own unique neurotypes – the world would be a better place, if everyone loved and accepted the things they cannot change.

The exception… (maybe?) Trauma, disease.

I do refer to myself as a person with cPTSD / Crohn’s Disease.

I can also see some small benefits in having cPTSD, but it’s very much outweighed all the time by getting triggered and losing frequents amount of time and sleep – not to mention that it can trigger a meltdown/shutdown.

Maybe one day I’ll get closer to controlling it. Until then… It’s something I have.

Words I prefer

Māori words for Autism

Kura Urupare:

Kura = Gift/Treasure,

Uru=in(pērā ki te Ruru)

pare = around your head

(ko te rae a te Ruru) = Kura Urupare.

Kura Urupare = Gift of response/sensories

Takiwātanga:

“my/her/his/their own time and space”

Further Information and Perspectives

Person First vs Identity First Language

Person-First Language: What It Is, and When Not To Use It

Person with autism or autistic person? My problem with “person-first language” for autism

Autistic Person or Person With Autism? – an #ActuallyAutistic Perspective | Neurodivergent Rebel

Daily blog challenge

I will be writing every day on being Autistic for April using this list of prompts:

Alt-Text Format with links to other blogs – Autistic Acceptance Month – 30 Days of Acceptance and appreciation:

Autistic Acceptance Month – Favorite Autism book

The artist for the above image is @Kayas_Kosmos.

Again – I have a strong aversion to using the term favorite.

I am going to list some of the books that helped me infinitely in understanding myself and what Autism actually is. I haven’t read every Autistic book yet – so it’s very hard for me to say if these are the best – they are the ones I have had a lot of value out of. The thing to realise is that Autism isn’t understood at all.

Science is still very wrong – Autistic people have existed for a long time – I found evidence of Autistic peoples existence in the 1st and 2nd Century AD. I will be writing about this particular issue with mental health in an upcoming book of my own – critically analyzing the current taxonomy and understanding of mental health.

Favorite books on understanding Autism

‘The Reason I Jump’ – Naoki Higashida

‘Fall Down 7 Times Get Up 8’ – Naoki Higashida

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism:  Higashida, Naoki, Yoshida, KA, Mitchell, David: 9780812985153: Amazon.com:  Books
Fall Down 7 Times Get Up 8 by Naoki Higashida: 9780812987195 |  PenguinRandomHouse.com: Books

Naoki Higashida as a thirteen year old severely disabled non-speaking Autistic child was able to work out a way to communicate using a letter chart (not the correct technical term). He wrote a series of questions and answers relating to what his experience of being Autistic was like. I read this book this year. For the first time in 37 years I understood how I was different. I had just recently been diagnosed as Autistic – but I didn’t know what that meant.

I would urge ALL people to read this – those who you think are severely intellectually challenged are rarely ever – the latest studies show those who do have severe intellectual disability are about 2% of the Autistic population.

This next part might be challenging to hear for some:

Those Autistic children who you think are intellectually disabled because they cannot talk – actually are not at all – they usually lack the means to communicate.

At least read the introductions to the books by David Mitchell (of Cloud Atlas fame) please. The introduction to ‘Fall Down 7 Times Get Up 8’ has one of the most brutal and extremely important realisations to have as the parent of an Autistic child. He realises he has been lied to – he has been hurting his child because of science that is wrong. He’s distraught for doing it – it’s an honest admission of doing the wrong thing for the right reasons.

He turns his sadness and guilt into anger to make change – targeting those who have been doing it – the charities and scientists who’ve been actively harming Autistic people for money and fame. Listen to how he talks about his child between the two introductions – he finally understands them and their relationship is thriving – he accepts them for their Autistic behaviour.

Favorite Autistic History Book

NeuroTribes - Wikipedia

Steve Silberman has done an incredible job of talking about how prevalent Autistic people actually are – our estimations about how many people are Autistic are probably off by a scale of magnitudes higher than current estimates.

Autistic treatment and the destruction of Autistic culture has grown out of developmental psychology which is all based on the eugenics science of the 20th century. White supremacist eugenics paved the way for the mistreatment of Autistic people.

This book covers some incredible Autistic people who were given an opportunity to shine, and to live amazing lives due to their support – and so many of them made vast contributions to the advancement of technology. The entire field of computing is filled with Autistic people – it’s one area where the trait of systemizing and the way the Autistic mind works is embraced – but keep in mind that this is only one category of Autistic people.

It also delves into the history and destructive nature of Applied Behavior Analysis in the treatment of Autistic people. Simply put ABA is conversion therapy for Autistic people – it causes trauma even if using positive reinforcement – DO NOT USE BEHAVIORAL THERAPY ON AUTISTIC PEOPLE – YOU WILL REMOVE AGENCY AND ALLOW ABUSE TO OCCUR BY DECEPTIVE NON-WELL MEANING PEOPLE. I ENDED UP NOT BEING ABLE TO FEEL PAIN WHEN I SHOULD THANKS TO THE DENIAL OF MY SENSORY NEEDS.

We are desperately trying to get people to STOP doing behaviour therapy – there’s a petition here to start an official inquiry into the abuse of Autistic people using this therapy in New Zealand (anyone can sign).

This should transform your view on Autistic people – this is one of the few books that Autistic people actually recommend about Autism written by an non-Autistic author.

Favorite Book for Parents

Sincerely, Your Autistic Child by AUTISTIC WOMEN AND NONBINARY N - Penguin  Books New Zealand

TW/CW // Trauma – I love this book. Autistic people should read it, with the following advice. This book also unfortunately for me was a key to my childhood memories – it included prompts that reminded me of specific situations that had occurred in my childhood that I had locked away. These are not false memories – which is based on some very bad science and gaslighting. These are things my mind had hidden from me to protect me – it’s been hard to process.

I wish my parents had read this. I wish I had the things this book suggested as a child. I wish every parent of an Autistic child could read this book. No matter how ‘High’ or ‘Low’ functioning you consider your child to be – which is again bad science.

All Autistic people have been trying to do their entire lives is communicate honestly to the people around them, but we’ve so often been told that the things we think or say are wrong, or that we are making excuses.

We end up losing ourselves.

There are so many heartfelt stories, so many different tales of trauma, so much sadness and internalized ableism each of the writers have had to overcome, and are still dealing with.

It’s a mirror of my experience at times, I was born AMAB – but I am non-binary bixsexual person – I do not identify as a man. I was a sensitive empathetic person growing up in a man’s world, my best friends have always been women or those with feminine traits. At nearly all times in my life I was utterly savaged for it if I showed it OR I would blend in by doing things that made me hate myself because they grated against my internal morality and need for honesty.

It was 34 years until a single authority figure in my life actually listened to me – even though I was undiagnosed.

There are key themes across their writing.

Believe your Autistic child. Love your Autistic child. Fight for the rights of your Autistic Child. Be patient. Be kind. Assume competence always. Help us communicate the right way.

NEVER MOURN YOUR ALIVE CHILD BECAUSE EVEN IF THEY ARE TOO YOUNG TO UNDERSTAND AT THE TIME – THEY WILL REMEMBER AND FIGURE IT OUT AND THEY WILL WISH THEY WERE DEAD TOO. ABLEISM MAKES YOU DO THIS. NOT AUTISM.

We usually hear things you think are in hushed tones.

I read this book with tears streaming down my face the entire time, because my life might not have been utterly impossible for 37 years. I never knew I was Autistic. I never knew why horrible things kept happening to me as a child or as an adult. I sometimes didn’t know they were horrible things until I was older. I did bad things because I thought it was important to have at least some ‘friends’, or due to not being educated properly. The people I made ‘friends’ with were bad people who hurt others and were hurting me. I never had boundaries. I was a perfect target for abuse – and people took advantage of that until I was 34.

I didn’t know myself because I didn’t know I was Autistic, but after reading their stories, I realise even with my complex Post Traumatic Stress Disorder as a result of living in a world that’s hated me for reasons I couldn’t work out – I was at times one of the luckier ones.

Children need to know they are Autistic – but you need to know what being Autistic actually means – there’s a range of voices here all with differing levels of support needs at different times – Autism is rarely a fixed thing – it’s “severity” ebbs and flows generally due to the amount of external stress in our life times.

Parents need to be the first step in making sure we have the tools we need to thrive – and those tools are often not the ones you are thinking of – they are the ones WE as Autistic people need.

Please read this book parents. PLEASE. Reread it. Take notes. Turn to it on hard days where your child is struggling more.

If you think Autism is hard for you – this gives you a glimpse of what it’s actually like for us – don’t make our lives more difficult than they need to be – the rest of society will already be making it hard enough for us as it is.

Please stop charities from raising money to eradicate and brainwash us.

Further Reading

Not An Autism Mom has an incredible list of books that have been verified by Actually Autistic people here: Autism Books

Daily blog challenge

I will be writing every day on being Autistic for April using this list of prompts:

Alt-Text Format with links to other blogs – Autistic Acceptance Month – 30 Days of Acceptance and appreciation: