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Mar 26 2023
NHS services in England’s South West are endangering Autistic children

Today, I came across an article by The Guardian that raises a life-threatening issue. It seems that due to a 350% increase in referrals for autism diagnosis amongst children since the pandemic, NHS managers have moved the goal posts and added extra criteria to meet before a child can be referred. Unless a child meets these criteria, they will not have access to diagnosis, with the irony being that early diagnosis could stop them from meeting this criteria; which indicates an extreme level of suffering to be required before getting the admittedly already pitiful support that is available.

Let’s look at the criteria, as discussed on the Sirona Website:

Who can be referred? Children and young people meeting the following referral criteria can be referred : Children and young people whose education placement is breaking down despite appropriate support (including those who are NEET – not in education, employment, or training – and those at risk of permanent exclusion, transfer, or long period of school refusal). This may include children and young people who need an Autism diagnosis to access the required specialist provision.  Children and young people whose family unit is at risk of breakdown despite support from appropriate agencies (parents/carer and social care are unable to meet the children and young person’s needs, leading to risk of child protection proceedings and/or child needing alternative placement). This can also include children whose adoption is at risk of breaking down.
Children and young people in care or on a child protection plan for whom an assessment is needed (e.g., to inform placement planning). Children and young people who are open to Children and Adolescent Mental Health Services (CAMHS) with severe and enduring mental health difficulties (i.e., high risk to self or others) where an autism diagnostic assessment is required to support their formulation and care. Or children who are not open to CAMHS but are presenting with a serious risk to self or others (e.g., risk of exploitation, significant self-harm, dangerous levels of aggression towards others). Children and young people who are involved with youth offending services and/or are engaged in repeated offending behaviours. Children with very low levels of communication where the difficulties are likely to be associated with autism (usually Early Years)

This means that we are expected to wait until a child or young person is already in crisis before they will even refer them for diagnosis. It’s tantamount to negligence and threatens the wellbeing of a demographic that is already significantly more likely to die by suicide.

People on Twitter are also speaking out against these unethical criteria.

Tweets like this highlight the fatigue so many of us feel from trying to make sure Autistic people are supported.

What are we supposed to do when those who are supposed to support us only choose to do it when they are given no other choice? How do we fight back against the brazen demonstration of how inconvenient our existence is considered?

Autistic children and young people will end up in crisis and maybe even die due to rules like these.

This is not ethical, and it is a failure to ensure reasonable adjustments. It is an overt indicator that equality laws can be broken when it’s too inconvenient to follow them. The NHS needs to put a stop to this before more lives are lost.

We are Autistic, and we deserve to be consulted before such inhuman criteria are created.

For further reading about the failure of the NHS to support and protect Autistic people, please check out these articles:

CAMHS nearly killed me, and it’s not okay.

CAMHS in crisis: The systemic failing of Autistic people

Autistics Incarcerated: The dark underbelly of the NHS

Here is a petition to reverse these criteria changes

David Gray-Hammond 1 Comments
Jan 29 2023
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.

David Gray-Hammond 1 Comments
Sep 20 2021
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.

David Gray-Hammond 0 Comments
Jul 24 2021
Unmet support needs and multiple systemic failures: A story of addiction and autism

As I have said before, I truly believe that addiction is the result of unmet support needs. This can be an incredibly complex field, but today I am going to take take brief dive into the experiences that led to my addiction.

My first major trauma was age 7. My best friend, Carl, died of leukaemia. At the age of 7, I had no way of processing this. From there the trauma kept coming. My therapist and I identified over 30 individual and unrelated traumatic experienced, we didn’t even get a chance to look at the systemic trauma I had experienced as an undiagnosed autistic person.

My mother tried desperately to get me diagnosed as autistic in the 1990’s, in hopes that there may be some support for me as I grew up. Repeatedly she was turned away as “an over-anxious mother with too much knowledge of the subject”.

So now I was an undiagnosed Autistic, trying to navigate a world that was in no way designed for me. After years of childhood trauma I started hearing voices and experiencing paranoia at the age of 18. I was so used to masking, and so utterly terrified of the mental health system that had failed me as a child, that I turned to drink and drugs.

Let’s take a step back for a moment. While all this was going on, we have to acknowledge that I grew up in an area of extreme social deprivation and poverty. My mum was working class, and supporting myself, my sister, my grandmother, and my aunt financially. My aunt was herself a drug addict and alcoholic, and substance use was a common staple of the town I grew up in.

I had sworn that I would never go down that path, but adult life was a lot more difficult than I could have imagined as a child.

The pressures of mainstream education, coupled with the culture of partying found amongst many people aged 16-25 left me with a deep seated desire to finally fit in. Diagnosticians had failed to tell me that I had a place in the world, so I followed the crowd. The crowd liked to take drugs and get drunk.

Through out my university years no one picked up on my Autistic neurology. I was labeled as anxious, depressed, and on one occasion (that would follow me for years) I was diagnosed with Emotionally Unstable Personality Disorder (sometimes known as Borderline Personality Disorder).

By this point the education system, and child and adolescent mental health services, had completely failed to perform their duty of care. They missed my diagnosis, and failed to tackle the bullying I had experienced for being different my whole life. I was feeling beaten down and broken. I tried to end my life on more than one occasion, I saw no point in continuing.

When I finally accessed the substance misuse service, they also failed to discern my Autistic nature. They continued with the EUPD label, my substance use got worse.

In the end, I made my own realisation that I wanted to live, and that’s what got me out of active addiction.

7 months after finding sobriety, I was diagnosed autistic. This was probably the single greatest moment of relief in my life. Not everything that followed would be perfect, but I had a better understanding of myself, and would soon discover the autistic community.

Had my autism been identified as a child, and my support needs have been met throughout my life, I am confident that I may have never turned towards substance use and addiction.

Life has been a battle, but I am happy where I am now. I truly love the work I do.

Don’t give up fighting, fight for your needs, fight for your child, and whoever you are, celebrate the beauty of your own diversity.

David Gray-Hammond 0 Comments
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