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CAMHS ignorance of Autistic children runs deeper than refusing to see them

As I have mentioned in previous articles (which can be found here and here), there is an ongoing petition which at the time of writing has over 180,000 signatures. This petition was started because of the ongoing issue with the Child and Adolescent Mental Health Service (CAMHS) refusing to see or support Autistic children and young people.

This in itself seems bad enough, Autistic people deserve support with their psychological wellbeing as much as anyone else, and with the high incidence of trauma among Autistic people, you can imagine that a service like CAMHS should be a lifeline to us. Instead, we are almost always turned away, and our families are left to work it out with us on their own.

The issue with CAMHS and mental health services in general is deeper than gatekeeping and ignorance, however. It comes down to a sort of cultural competency that most professionals lack when they are working with Autistic service users. What is needed is Neurodivergence Competence.

This particular type of competence was conceptualised by Tanya Adkin, which we then wrote about in our co-authored Creating Autistic Suffering blog series.

Essentially, it requires the creation of Autistic safety via a distinct level of competence in Autistic culture, theory, experience, and a broad understanding of the discrimination we have faced both historically and contemporarily. This is what is missing from CAMHS services.

If CAMHS staff had a good understanding of what being Autistic meant, they would not have to turn Autistic children and young people away from their services. The reason they can not work with Autistic people is due to a lack of competence around neurodivergent experience and culture.

While Autistic peers are going to be in a stronger position to provide this kind of care, it is not something that needs to be gatekept to Autistic professionals. Non-Autistic professionals can achieve this kind of competence by engaging in Autistic spaces and accepting the expertise of those who have actual Autistic experience. It’s possible to attain neurodivergence competency by accepting that, at best, your knowledge is second-hand.

Respecting a person’s life and culture can go a long way to improving the way you work with them.

Until such a time that professionals within CAMHS become competent in working with Autistic and otherwise neurodivergent young people, they will continue to fail them. No amount of mandatory training, frameworks, strategies, or specialist services will equate to the importance of this kind of competence.

So please, sign this petition, and help us start the drive to make a CAMHS that is helpful for everyone.

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A Schizophrenic woman was dead three years before being found: Here’s why that happened

This article will be upsetting to read.

Click here to read the news story.

Laura Winham was a Schizophrenic woman. I don’t know much about her, but I can imagine what her life might have looked like. Schizophrenia is a peculiar form of neurodivergence. I know from personal experience that this particular neurology can make you question just about every aspect of reality. It’s possible that (like me) she was exhausted from the daily battle to know what  thoughts could and couldn’t be trusted.

Like any neurodivergence, I don’t see schizophrenia as an illness. What we see as the diagnosable condition is actually the manifestation of distress in a neurodivergent brain. It is isolating and scary. When episodes happen, you will give anything for it to be over.

Laura was a human being with a life, a family, and undoubtedly had a lot to offer the world if supported to move beyond the experience of distress.

I think when many people read this story, they imagine it as an unavoidable tragedy. Perhaps they imagine that the problem was with how long it took people to discover her remains. That is not the issue. The issue here is the failure of Local Authorities and mental health teams to provide the support this person needed to survive her distress.

These services are supposed to draw the line. They are the one’s we turn to in our most vulnerable moments. Yet, for many of us, it seems thar we are little more than a nuisance for them. The advent of crisis-driven interventions and defensive practice have meant that people of all ages and backgrounds are dying at the hands of services that couldn’t do their job if they wanted to. The resources aren’t there. There is very little meaningful intervention that services can provide while the system is being defunded and sold off to private interests.

If people want to know why individuals such as myself and Laura have such drastically reduced life expectancies; consider the ongoing distress we experience and the way that distress is compounded by services that offer little to no meaningful support. Laura was very much on their radar, but as you may have heard- you can’t pour from an empty cup.

Her death was 100% preventable. Schizophrenia and other neurodivergence doesn’t have to be a terminal diagnosis. When given adequate support, and when given access to affirmational environments, we are able to flourish. We can experience the joy of human connection and self-development. Sadly, Laura’s development was cut short by inept professionals and the fallout of a government that cares more about profit than people.

This failure will have unending ripple-effects that will go on and potentiate themselves throughout the lives of those who cared for her. This needn’t have happened. This could have been different.

Do not allow this failure to be swept under the rug. Don’t let her death be in vain. Now is the time for action, now is the time to draw a line in the sand, and protect all neurodivergent people from the dangers of a broken system.

Back to the corner: Psychoactive drug use, my Autistic experience

Some 4(ish) years ago, my debut blog post on this website was Standing on the corner: Where autism and addiction meet shortly covered by Recovery services as an Autistic adult. Back then My writing was merely an attempt to scream into the void, offloading my frustrations. Little did i know that in 4 years, my articles would have garnered over 25,000 views, and that people would ask me to go places and do things. I was also pretty surprised to discover that for the most part I don’t mind going places and doing things.

With that in mind, I decided it’s time to take another crack at this one, seeing if 4 years of experience makes for an improved experience for you, my wonderful readers and followers.

So here we are.

I’m David. Born Autistic at the dawn of the 1990’s. My life was pretty standard for what you’d expect of a truamatised, psychotic, recovering addict. So let’s consider where this particular part of my journey started.

October 2008.

My long term relationship came to an end (mutually, but still painful none-the-less). On that very same day, I had a peculiar experience. I heard a number of voices calling my name, but it seemed that it wasn’t the people around me that were doing so. Interestingly, this was the day of my first ever cigarette as well. Hindsight tells me that the fact that my first cigarette led to me smoking an entire pack in a number of hours should have been a huge warning for what was coming. Sadly, hindsight isn’t good for much, and I have a traumatised AuDHD brain that at the time was going through what some might term a “prodromal phase” for the psychotic condition I would later be diagnosed with.

Over the next week I discovered that smoking cannabis really helped my growing paranoia and auditory disturbances chill the f*ck out, and that when drank a litre of vodka, I just didn’t give a sh*t. Just a note here for anyone who can’t see what’s coming; drug-use and trauma is a volatile mix. Some people use psychoactives safely and medicinally their whole lives, with no real negative outcomes. I on the other hand came to resemble one of those warning videos your school would have shown you about the dangers of peer pressure and drug-use.

So, naturally I did what any normal AuDHD’er would do when they discovered something that makes them feel good. I did it again. And again, and again, ad infinitum. Each time I used, my consumption grew. Each new environment I entered I would break down another boundary in my life. First it was cannabis, then alcohol, and I figured that since these two weren’t the dangerous and hellish things my school had made them out to be, perhaps other psychoactives would be okay as well. Side note: this is why using scare tactics and abstinence based approached to stop young people from getting high is f*cking irresponsible, because when they find out they’ve been lied to, they don’t truat you on ANYTHING.

My time at university can be summed up by quoting myself “I don’t think you’ve ever seen me this high, have you?” and the phrase said to me most often “How the f*ck are you still alive?”. You see, I hadn’t noticed it, but I was taking drugs by the shed load. I was out of my mind on pretty much anything I could get. It’s easier to list the drugs I haven’t used than the drugs I have used; To date, I’ve never used “street” heroin, or crack cocaine. More on this in a moment.

What this meant was that when I ran away from my environment, making the 300 mile journey back to my mother’s house, I swore I would never use again. After all, I had nearly died on a couple of occasions, and found myself on the radar of what one might describe as “less than savoury people”.

More on my drug use…

Yes, I have never used Heroin or Crack, but what did happen was that I got addicted to Oxycodone, Diazepam (Valium to my american followers), and Spice (you know, that zombie drug that everyone was talking about for a matter of months until it became illegal and everyone decided to pretend like the problem was solved). Of course, I was drinking a litre of whiskey most nights, and I also had excellent taste in red wine and ales.

Unsurprisingly, I found myself under the treatment of what would describe itself as a “Substance Misuse Service” (SMS), interestingly, there seems to be an unwritten rule that when you spend more time in hospital from drug overdoses than you do at home, they get a little angsty with you. Here’s where I start getting pissed off.

By the time I was under the SMS, I actually wanted to stop using, but had completely forgotten what normal life was like. I hadn’t been sober a number of years, and was quite frankly spending most of the day looking like I had just left the set of Fear and Loathing in Las Vegas. My keyworker was a wonderful person, and conveniently specialised in Novel Psychoactives like Spice. Sadly, that’s about as far as my good experiences go.

You see, I had also been referred to the local secondary care mental health service, referred to as the “Assessment and Treatment Service” (ATS). Again, they took umbridge with my repeated unaliving attempts, and decided they should probably do something about this obvious wild card called David.

Here’s the problem though.

The SMS needed my mental health to be treated. How can a person stop using drugs to hide from trauma, when that trauma is still ongoing and not being processed? Luckily, the ATS had a stellar response; “We can’t treat your mental health until you are sober”. Thank goodness that we could all agree on absolutely nothing.

I was quite privileged eventually, because my lead practitioner at the ATS actually spoke to my keyworker at the SMS, and we eventually got somewhere. It was a psych ward, but it was still somewhere, and that’s what matters.

I detoxed off the psychoactive stuff, and then detoxed some more in the community. April 7th 2016 I had my first day of sobriety in close on a decade. This warranted a celebration, naturally, so naturally I threw myself into a monotropic spiral, had a major psychotic episode as a result, and earnt myself a free trip back to the psych ward. Oh, and by the way, being Autistic on a psych ward is a huge steaming pile of bullsh*t that has been placed in an already burning dumpster.

So what other issues did I face? Services were woefully ill equipped to take on a neurodivergent client on just about every front.

The entire system for appointments was clearly designed by and for neurotypical people who assumed that everyone had a good grasp of time-keeping, sensory regulation, emotional regulation, and their short term memory. It was an absolute nightmare.

So what was different about my drug use compared to a neurotypical?

I think the largest difference was my approach. Drugs were my special interest, still are to an extent (just without the use of said drugs). I used myself as a science experiment. I kept detailed journals of what I’d taken, what dose, what I had combined it with, and how it affected me over a number of hours. My ultimate goal was to find the sweet spot where I was no longer aware of my existence, but still alive.

Another interesting aspect of my drug use was my blatant identity crisis. Growing up Autistic meant being constantly told that who I was, was incorrect. Everything about me was a target for the neurologically provincial bigots. So when I discovered that drugs allowed me to build a new identity, one that I felt was better accepted (says something when your addict identity feels better accepted than your Autistic one, doesn’t it?), I leaned into it and allowed psychoactives to become my ENTIRE identity.

Of course, I was still Autistic and ADHD as hell, so drugs often served to extend my spoons reserves far beyond their limit.

The biggest pull of drugs though? I could switch off my feelings, or change them in a matter of minutes to hours. I had the control, I felt what i wanted to feel. Take that, brain!

Of course I tried things like the 12-step program to get sober. It really wasn’t my sort of thing, but apparently voicing that in meetings is a huge faux pas that means none of the 12-steppers continue to talk to you when you leave the program. I ended up taking things I had learnt from multiple sources and building a life where it was easier to not use anymore. When I was struggling, I would reach out and help someone who needed help. It became a philosophy that I lived by. These days I have to be a bit more careful with my spoons, but still essentially try to live life by helping others out of the dark spaces that litter the world.

The fundamental problem with my experience in “the system” was that no one had any appropriate training around neurodivergent people. To be fair, I didn’t even know of things like monotropism, double empathy, meltdowns, burnout, or really anything to do with actual neurodivergent experience, so I couldn’t really act surprised when services didn’t either.

Life hasn’t been perfect since I got sober, but I’m glad I got to experience it. Sobriety has been a gift that I gave to myself, I don’t intend to ever return it, but one thing I have learnt more recently is that if you spend your entire life trying to predict the future, you’re not going to have a fantastic experience of the present.

A set of final words? If you are struggling right now, with any of the stuff in this article, I want you to know that it CAN get better. I don’t say that to bullsh*t you. The ugly truth is that not everyone survives this stuff. I do, however, urge you to give yourself the best chance you can. 7 years ago, as I embarked on my recovery, I could not have imagined being where I am today. The suffering I was experiencing seemed unending and inescapable. I got out, though.

I truly believe that everyone deserves a chance to be a happy and content member of the society they live in. Of course mental health and addiction are only a small part of peoples experiences, which no doubt I have already, or will, elaborate on in some capacity.

I just need one thing from you, dear reader, don’t give up. Keep trying.

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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