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(Mis)perceptions of reality: Autism, psychosis, and my quest for objective truth

For as long as I can remember, I have been preoccupied with the difference between truth, and mistruth. Long before my psychosis began, I wanted to know how the things we held to be true could be proven as objectively true; it seemed to me that truth was in the eye of the beholder.

Six months after my 18th birthday, I discovered that my reality was a shifting and changing experience.

The problem with psychosis is that you don’t know it is happening. You literally experience an alternative reality. What this taught me was that things I held to be true were entirely subjective, which brought me to the realisation that everyone’s interpretation of truth was subjective.

Consider the boundary between truth and mistruth. It is abstract, a non-entity. Said boundary is entirely built from the collective experience of humanity, an experience which is in itself subjective.

Where those experiences intersect and agree, we label it objective truth. How then can we construct truth from a mind such as mine? One in which reality is a malleable and fluid thing. My Autistic Self has been preoccupied with this for many years, and truthfully I am still searching for answers.

Perhaps, then, it is reasonable to argue objective truth in terms of Descartes? “I think, therefore I am”. Of course this is made more complicated by the after-the-fact functioning of consciousness; and yet, I have often found myself drawn to a sort of solipsism during times of crisis.

Thus, we are left with the only thing I can hold to be objectively true from moment to moment. That my sense of identity, my experience of Self, at any given moment, is the only thing I can hold to be true. An identity that itself is constructed from interactions with my (mis)perceived reality.

So, when I argue the importance of community-connectedness, I am going beyond minority stress models, and beyond social reciprocity. For me, the communities I interact with, and the individuals that I speak with, are directly constructing my truth.

That is why the Autistic community is so vital to me. They have built the only thing that I know to be true.

Coping with psychiatric medication when Autistic

For many of us, medication is a necessary part of life. For a huge portion of the Autistic population, that medication is prescribed by a psychiatrist.

Psychiatric medication can be a troublesome topic, psychiatry itself is a relatively young discipline, and can often be found to be neuronormative in nature. It relies on the idea that the human mind can become ill and require medicine to fix it, and yet no test can definitively prove the presence of this illness in the body. It seems logically absurd, and yet, mental health issues can cause immense suffering.

One of the most stressful parts of taking these kinds of medications is finding the right one. Each person brings a different neurology to the table, so when using psychiatric medications, which by their nature act on the brain, it is important to remember that there is no “one size fits all” approach. Each person will have a different experience with medication, and this issue is compounded when you consider the Autistic population, for whom little to know research is done on the efficacy and safety of medications.

This moves us neatly onto my next point, which is side effects. Autistic people often experience rare or paradoxical reactions to medications in my experience. A recent medication change for me actually turned the skin on my hands blue! This is why I always ask my psychiatrist to take the harm reduction approach of start low, go slow. In other words, start with the lowest reasonable dose, and very slowly titrate the dose up. I find that for me, this has helped me avoid many of the less tolerable side effects, and better tolerate the ones that I do get.

An interesting point raised by twitter user @lilririah is access to food. Many of these medications rely on the idea that people can eat regular, healthy meals. Something that prescribers should consider is that the world over is experiencing a huge rise in the cost of living which is having a huge impact on the disabled community at large. Telling someone they have to eat when they take their medicine can essentially be the same as telling people that they can not take the medicine. When the world is trying to decide between heating or eating, a life or death decision over important medications is not going to help their anxiety.

Once you have overcome all of this, there is the issue of maintaining the treatment. Medication comes with a lot of stigma that many of us internalise, and some people simply do not want the medication in the first place. While personal choice is important, and should come from an informed position, prescribers need to do more to help people maintain a healthy relationship with their medication. When you consider the Autistic and ADHD bodymind, it is easy to see how remembering to take a set dose at the same time every day could become problematic.

Assuming all of this isn’t an issue, there is one more problem I want to discuss. Sometimes medication just stops working. Sometimes we can be stable for years, and out of the blue, we fall apart. It is the unfortunate truth of psychiatric medication. This is why we have to be willing to go over this battle time and time again to stay balanced. I personally struggle with this part. I often wish for a magic pill that would make my psychosis go away forever, unfortunately, that does not exist. Besides, mental health is part of who we are, good or bad, it plays a role in our experience of the world.

Whether your mental health is in a good or bad place, we all have something to give to the world, we are all important in our own way. It’s easy to lose sight of that when you have grown up Autistic, constantly being invalidated and told that everything about you is wrong. I want to assure you that the world is better for having you in it, and the battle is worth it.

Stay strong.

What is psychosis and how can I recognise it?

There are many myths about psychosis. Chief among them that those of us who experience it are dangerous individuals. While there are predictors of violence towards others in psychosis (such as co-occuring substance use), generally those experiencing psychosis are more likely to be victims of violence than perpetrators.

As Autistic people, or parents of Autistic children, we can often find ourselves lost when it comes to mental health support systems. For many years, poor mental health has been treated as a part of the diagnostic criteria.

This is 100% incorrect.

While mental health issues are incredibly common amongst Autistic people, they are generally the result of trauma, and never a direct result of being Autistic. I know for myself that being in the CAMHS system, my mother and I were invalidated at every turn.

What they never managed to recognise in me was that I was entering what would be called the “prodromal phase” of psychosis. What this essentially means is that they missed the warning signs that I was heading towards psychosis.

What were the warning signs?

One of my earliest memories is of a hand materialising out of my mothers bed, to offer me a chocolate bar in my cot. I believe I was around 2-3 years old. When I reached out for the chocolate bar, the hand disappeared. I cried and cried until my mother came to comfort me.

I was unable to voice what I had just witnessed.

Throughout childhood and teenage years, I experienced terrifying “night terrors”. What they actually were was hallucinations and waking nightmares that were so vivid I still remember them to this day. They were put down to fevers by doctors, even when there was no evidence of a fever.

Finally at the age of 18, my mind snapped. I started hearing voices and suffering paranoid delusions. No one would be aware of this until I was well into my twenties, because the psychiatrist believed my mask, and I buried the experience under mountains of prescription and illicit substances.

Now, at 31, I have been stable for around 5 years, finally receiving appropriate treatment and care for my mental health conditions.

So, how can you recognise psychosis in your child or teenager?

First of all, look for a change in affect. This means a withdrawal from usual behaviour, often manifesting as a depressive state. Alternatively, they may experience a euphoric state that leads to them taking risks to their personal safety, known as mania or hypomania.

Perhaps they have become irritable or aggressive? While psychosis can’t be used as a solid predictor of violence, they may become more overwhelmed.

Does your child or teenager appear to interact or react to stimuli in the environment that doesn’t exist? When I am stressed, I often hear phones ringing, doorbells chiming, or people calling my name. None of it is actually happening.

Finally, are they becoming suspicious or paranoid? People experiencing psychosis can often develop paranoid delusions. For me this included beliefs such as my food being poisoned, or that I was trapped in a computer simulation.

While full blown psychosis doesn’t usually manifest before the late teenage years, it is important to be aware of the signs. I often wonder what my life would have looked like if someone had spotted the indicators earlier.

We can’t allow mental health services to fail our Autistic children and adults.

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