Search for:
Why is it so important for CAMHS to support Autistic children?

Autistic children, much like Autistic adults, live in a world that bombards them with traumatic experiences. There is often a misunderstanding around what trauma is caused by the neuronormative standard of what is allowed to be viewed as traumatic. The truth is that trauma can look different for Autistic people. Trauma that often lands our children on a CAMHS waiting list.

It is no surprise then that in a previous article I found that 70% of Autistic people experience issues with their mental health compared to 25% of the general population. This has resulted in a staggeringly high suicide rate with equally concerning numbers for the number of attempted suicides. Autistic people are losing their lives because of the cruelty and mistreatment inflicted upon them by this world.

Why is it then that CAMHS is turning away children who carry a label of “autism”? As soon as that word is queried or associated with the Autistic person, many services will turn them away. If you are Autistic and on a CAMHS waiting list, you very quickly learn that your struggle is not something that can be supported.

Autistic children are often referred onto disability services that lack the understanding to support their mental health needs. Too many Autistic children need CAMHS but are instead offered services that lack the expertise to support them. It seems as though there is some circular logic going on here.

CAMHS won’t support Autistic children because they lack the specialist knowledge to do so. However, because this means that Autistic children represent a small amount of their service users, it is deemed that there is no need to upskill their staff. It becomes an iron circle of failure.

Beyond this, CAMHS aren’t even offered the funding to upskill their staff. Mental health services in general have faced decades of underfunding meaning that despite the government’s promise of £150 million in additional funding for mental health, it is likely that this situation is far from fixed.

CAMHS are not just turning away Autistic children. They have a significant lack of competence with regard to Autistic people. This, in part, can be traced back to the medicalisation of Autistic experience and the ignoring of Autistic voices. A lot could be changed simply by inviting Autistic researchers, advocates, and activists into clinical commissioning meetings.

Fundamentally, the first step is to have Autistic children admitted to CAMHS services. The current situation allows for their existence to be ignored, creating environments with no requirement for doing better. We can’t stop there, though, because to do so would be to relegate Autistic children and their families to the position of perpetual educators. Autistic people are not a free educational resource.

We are real people with real lives. Autistic children, like any children, feel love, fear, happiness, and sadness. All Autistic people are threatened while the younger generations of our community are inappropriately supported. We need to create a world that says yes to supporting Autistic children rather than bickering amongst themselves over who is the most qualified to support them.

If you want to be a part of making a difference, please sign this petition.

Check out more on this topic on the CAMHS Crisis resource page.

To support my work, please consider purchasing a subscription to my Substack.

What is it like to need mental health services when you’re Autistic?

According to statistics, 70% of Autistic people have a mental health condition. This is deeply concerning compared to the 25% of the general population that will experience a mental health problem in a given year. Autistic people are also much more likely to die by suicide with current statistics suggesting that the National Autistic Society assert that there is an increased risk of suicide mortality with the Royal College of Psychiatrists suggesting we are nine times more likely to die in such circumstances.

Given these deeply concerning statistics, the causes of which you could author several books on (I know because I wrote some of them), it is no surprise that Autistic people often find themselves in contact with wellbeing and mental health services. Personally, I have been under the care of secondary mental health services (CAMHS as a child and ATS as an adult) for over half of my life.

Both services had their failings, and CAMHS has been in crisis seemingly since it’s formation.

The first thing you need to understand about specialist mental health services in the UK is that they don’t really use a prevention model for intervention. Instead, they use a crisis-driven intervention model that only begins work with you when you are deeply suffering. This was particularly problematic for me as a drug addict; I was perpetually in crisis, but the wrong sort of crisis for professionals to take me seriously.

In my early twenties, I was under the care of a Substance Misuse Service alongside my mental health support. This was remarkable to be between. Like many others, I found that services were never quite sure who should take the lead. It became a self-sustaining cycle of “treat the mental health issues to fix the addiction, fix the addiction to address the mental health issues”. I have witnessed many of my peers fall between the cracks and disappear because of the back and forth of treatment and support.

What has always been quite remarkable for me is the complete lack of understanding of autism in just about every person who said they were prepared to work with an Autistic “service user”. Professionals were often unable to understand my experience, even with the best of intentions behind them. It complicated the feelings of alienation and isolation.

Therapy was always a tricky affair. More or less every single therapy I was offered was based in behavioural methods such as Cognitive Behavioural Therapy (CBT); despite it’s widely known lack of efficacy in the Autistic community. At best, therapy has been moderately helpful, and I have benefited from being able to just talk about the horrible things that have happened to me.

Autistic people experience ALOT of trauma over their lives.

From a more practical standpoint, trying to engage with services has been deeply problematic. I am Schizophrenic. I need to engage, but as an Autistic person, I need predictability and accountability. Professionals are often spotty in their communication, disappearing for weeks at a time, not fulfilling appointment I have made, or being late. This has made engagement quite an upsetting process for me.

While I am “treatment-compliant” I have also found that my medication gets fiddled and altered very regularly. The problem with psychiatry is that it’s so inexact that it barely seems like a branch of medicine at times. Side-effects and constant worry of change sometimes make you feel less willing to engage. I am no exception. Sometimes I have to wonder what’s the point?

Services feel very impersonal. It seems that case-loads for those coordinating our care are so high that we’re lucky that they even remember our names at times. As a person under these services, it is very evident to me just how much they have been defunded by the people in charge. I have to wonder if there would be as many issues if the government appropriately resourced the mental health sector.

There is a point to this. It’s May. Mental Health Awareness Month. Now is the time (apparently) to open up. Autistic people deserve adequate care for their mental health and are not receiving it. Most of us either go private, or accept that things will never be quite as smooth sailing as they could have been. If you’re going to raise awareness of anything this month, think about the Autistic people who are being shortchanged by a service that could very well save their life.

For more of David’s writing, please consider purchasing a subscription to David’s Divergent Discussions.

Don’t forget to head over to the CAMHS resource page and sign the petition to get proper support for Autistic children.

The troubling tale of CAMHS: A service that is not fit for purpose

When we think of mental health services, I’m sure a lot of images are called to mind. Some people might imagine the institutions of days gone by, where people in significant states of dysregulation under the watchful eye of orderlies, nurses, and doctors. Others might think of therapy sessions, sitting in comfortable chairs with a well-dressed person employing Freudian psychoanalytic analysis.

If you’re an Autistic child, you probably don’t know what to picture; it’s likely you haven’t been given access to the service that is meant to support you. This service is the Child and Adolescent Mental Health Service. You probably know it by a shorter name;

CAMHS

According to the Mental Health Foundation, 70% of Autistic people will experience a mental health issue. This already is deeply concerning. Mind asserts that 25% of the population will have a mental health issue in a given year. Why are Autistic people experiencing mental health problems at nearly three times the rate of the general population?

The Mental Health Foundation offers a suggestion for this as well; lack of access to appropriate support. In this case, CAMHS denial of support to Autistic children could very well be creating the mental health issues they are refusing to address.

According to a study from BMJ Open Online only 10% of the children under the care of CAMHS were diagnosed Autistic. Given that all the statistics that exist only really look at diagnosed Autistic children, we should expect Autistic children to represent the majority of CAMHS service users. However, perhaps the disproportionately high rate of mental health issues amongst Autistic people could be more balanced if we were getting appropriate support in the first place.

I have personally written about the negative effects that CAMHS failures had on me, I do not wish for another child or young person to experience what I did. Lets not forget that The Royal College of Psychiatrists suggest that Autistic people are nine times more likely to die by suicide than the general population. At what point do we acknowledge the role that underfunded and altogether disinterested CAMHS plays in these statistics?

Autistic children need robust support from competent and safe professionals. It’s not enough to simply see our children. These services need to create an environment where it is unheard of to refuse access because of an Autistic identity and lack of staff knowledge. Trust me, we know that highlighting their refusal to see us is just the start of this fight.

Part of the problem lies with the National Institute for Health and Care Excellence (NICE) and their guidelines for co-existing conditions in Autistic people. They are very non-descript and offer little meaningful suggestions for supporting us. Many of the suggested “interventions” don’t have a good evidence base or may even do more harm than good.

We need to create a world where being Autistic is more than an afterthought. There are so many of us out there, and yet society at large treats us like the cryptids one might find in the woodland of North America. Except I am not a questionably blurry image of an unknown creature, I’m a living, breathing human being.

Autistic people have lives, they have hopes and dreams, and we feel joy and sorrow. More than anything, we deserve equal access to the parts of society meant to support us in our lives. But when funds are cut to services like CAMHS, Autistic people are the first to become acceptable losses.

Please sign this petition to help make a difference.

To support my work, you can subscribe to my Substack to access bonus content.

Don’t forget to check out my books!

Why Mental Health Awareness Month is failing Autistic people

May is Mental Health Awareness Month. The bitter irony that this comes immediately after the dreaded Autism Awareness Month/Autism Acceptance Month is not lost on me. After a month of fighting hard to be heard over the corporations who monetise our existence, May can feel quite offensive in its positioning of mental health.

We need people to learn about mental health. I will never say we don’t need that. Psychological distress is a heavily misunderstood and stigmatised state of being that threatens not just a person’s wellbeing but also their life. The problem is that when you are Autistic, discussion of mental health can be infuriating.

For as long as we’ve existed, psychological distress has been ignored in us. I often think of my own 14 year journey to get a schizophrenia diagnosis from psychiatrists who would tell me I was “just anxious” and that anxiety was “normal” in autism. Normal. Professionals have come to see our suffering as acceptable, and therein is where the problem lies.

There is no acceptable level of distress. However, the institutions that are responsible for our wellbeing have created the concept of normalised suffering because it shifts the focus off of the structures and power imbalances that traumatise us at every turn. Rather than change the parts of society that do harm, they label the fallout as “normal”.

Autistic people are so often left out in the cold with regard to their mental health. Services like CAMHS and adult mental health services will actively turn away Autistic people. Even those who do manage to access support are often met with cultural incompetency and therapies not designed for them. It feels as though we have to do things for ourselves at a time when we most likely feel incapable.

So, yes, May is Mental Health Awareness Month, but it’s not enough to learn about depression and anxiety. We need to create a culture where those who are most vulnerable have access to good quality support, and are not made to feel like outsiders for not blending with the crowd.

Autistic people deserve a happy life.

Sign up for David’s Divergent Discussions for 12 months of 50% off access to my bonus articles.

Don’t forget to check out the CAMHS Crisis resource page and join the Discord for community discussion.

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.

For access to bonus articles and more, please subscribe to David’s Substack.

CAMHS in crisis: The systemic failing of Autistic people

I recently wrote an article about my experiences as a former patient of CAMHS (Child and Adolescent Mental Health Service). In this article, I spoke about the effect that failing to support me properly had on my developing individuality and the immense suffering it led to in my early adult life (please find the article here). It was a widely shared piece of writing, but one theme has come up that I feel is important to address.

What are the specific ways that CAMHS fails Autistic children?

This is difficult to summarise. There is an interconnected network of systemic failings that culminate to create a potentially deadly set of failings. Every single day CAMHS turn away Autistic children, denying them support at a time of their life when they desperately need it. To summarise, it is a service that actively works against Autistic children and their families, but I believe we need to get a bit more specific.

1. Staffs knowledge of autism is pathologising and outdated

Staff within CAMHS tend to still favour medical models of autism, seeing it as a pathology that requires fixing (but not by them) and largely believing the incredibly harmful research of so-called experts like Simon Baron-Cohen. Talk of extreme male brain theory and theory of mind deficits would not be unusual in CAMHS. This could be remedied by engaging with emancipatory research models and the wider Autistic community. Unfortunately, this is yet to happen.

2. CAMHS professionals blame everything on autism when faced with an Autistic child

Despite the very specific diagnostic criteria outlined in various editions of the DSM over the decades, autism is still seen as the root cause of psychological distress in Autistic people. This is self-defeating on a number of levels. Most commonly we hear “this child is anxious because they are Autistic”.

Anxiety is not a part of the diagnostic criteria as outlined in the DSM 5. Neither is any other form of psychological distress. Models such as The power threat meaning framework have shown us that environments and power dynamics are the leading cause of distress. However, staff still blame autism, and then use that to refuse to support the child.

3. Parent/Carer Blame

I have spoken at length about institutionalised parent/carer blame and insinuations of Fabricated and Induced Illness. CAMHS are one of the institutions that will contribute to this. Parents who approach CAMHS for support are met with dismissal or blame for their child’s struggles. It is incredibly harmful as this can lead to children being removed from families and families facing criminal proceedings.

4. Medical Gaslighting

Many Autistic people are misdiagnosed. Teenagers in particular, especially those who are assigned Female at birth (AFAB) face diagnoses of personality disorders. Personality disorder diagnoses come with a level of moral judgements where those labelled as such will be told that their distress behaviours are an attempt at manipulation or attention-seeking.

Those misdiagnosed face the realities of carcerative care and testimonial injustice on a near daily basis. Misdiagnosis of such “conditions” is also used to label people untreatable and, once again, refused treatment.

This is not an exhaustive list

This is just some of the ways that I have witnessed professionally and experienced personally, the daily failure of Autistic people. CAMHS is in crisis. Staff are woefully undertrained, and the service does not receive anywhere near adequate funding. The problems with CAMHS can not be changed at merely the service level. We need to make a change at the law and policy level.

Until this is done, the Autistic children of the UK are in danger.

Please click here to help change things by signing a petition.

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

I don’t talk about my childhood much. Partly because I don’t want to upset my readers, but also because it is not my story alone to tell. The people who did so much harm to me as a child also caused harm to others that I love immensely. A sad part of my life is that as a result of the harm done to me, I made choices in my life that hurt those people I loved. I don’t blame myself, but I also haven’t quite reach the point where I can release myself from the sense that I need to make reparations.

Something that I think is really important to talk about however, is the way I was failed by professionals who very well could have turned my life around. I am happy with my life now, but I do wonder what it might have looked like had I not been left to drown by a service that was meant to be my saviour. That service was the UK’s Child and Adolescent Mental Health Service (CAMHS).

The worst part isn’t even that they ignored my mother’s pleas to assess me for autism. It’s not the time that they tried to put me on Ritalin after a five minute conversation. It’s the way they were nearly complicit in my surrender to the suffering that I experienced. I’m a suicide survivor, and CAMHS didn’t care.

I came to them, beaten and bruised, I laid before them my trauma, my pain, my isolation, my disdain for every aspect of myself. I told them that I couldn’t cope, that I was scared to wake up each day. I told them things about my past that I can’t bring myself to say publicly, even to this day. I was met with silence. Cold, uncaring silence. They did nothing. They labelled me a school refuser. They still refused to assess me for autism.

Is it any wonder then that I found solace in the steel trap of drugs and alcohol? What can one do in the face of unending suffering than desperately scramble to drown out the noise. The noise was inescapable. The voices in my head would scream at me daily. I was paranoid and distrustful of everyone, even those that I loved dearly. CAMHS allowed my psychological wellbeing to deteriorate to the point that I could no longer cope with existing. I resigned myself to an early grave.

Some might ask why this is relevant, I am a man in his thirties, surely this was a long time ago?

No.

This is still happening. Everyday, thousands upon thousands of families are forced to watch on as CAMHS allow their children to suffer. If you want to know why so many Autistic people die by suicide, start by taking a look at this (dis)service. CAMHS are complicit in an untold number of deaths. Each data point in those statistics represents a story untold. A future unrealised. With each child lost by the negligence of those meant to help them, our future becomes a little bit darker.

I am happy today, but it hurts. It hurts to know that my child and millions like them do not have this service in a good working order should they need it. I want a world that protects my child and seeks to heal wounds and change worlds. It’s the least they can do for our precious children.

My name is David, and I’m a CAMHS survivor.

Please help us change children’s lives by signing this petition.

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.

An open letter to parents of Autistic children regarding Spectrum 10k

Spectrum 10k, what is it?

Spectrum 10k is the latest research project to be announced by the Autism Research Centre at the University of Cambridge. It is a collaborative effort with the Wellcome Sanger Institute and the University of California Los Angeles. On the 24th of August 2021, the Spectrum 10k (S10k) research project was announced. You may have seen it on the news, it arrived with a lot of celebrity endorsement and media coverage. You may have also seen that there has been a major backlash from the Autistic community.

This is of huge importance to the Autistic community (and the organisations that have issued statements against it), a community that your child is a part of. Here’s why.

S10k want the DNA and medical records of 10,000 Autistic people, including our children. They claim that they will use this data to look into “the cause” of autism and associated conditions, which they have suggested will aid in diagnosis and treatment. On the surface, this may look like a great idea, however there are some extremely grave concerns about what this research will ultimately mean for our future.

Let us consider what it would take to improve quality of life for our children. It’s not in our DNA. We absolutely agree that improving diagnostic services would be of huge benefit, the state of diagnostic services currently is appalling, perhaps barely legal. Some areas have waiting lists of 3-4 years just to be seen. Once you have acquired a diagnosis, you receive a piece of paper and are sent on your way, without support.

What happens next?

You arrive at school with your piece of paper that says “Autistic” on it, because you have probably been told that there is no support without a diagnosis. However, we all know that with or without diagnosis, there is very little (or no) support. The entire country’s SEND system is in crisis right now, and everyone of us has felt that effect in our own homes.

Here’s what our kids need.

They need better training and understanding in services (led by Autistic people), smaller class sizes, more places in specialist schools, more CAMHS staff with smaller case loads. This is not an exhaustive list. These are things that the Autistic community has been advocating for, for many years.

Simply put, autism + environment = outcome.

The answer is not in our DNA, we are not defective, we are different, and we need different environments. A cat is a cat, not a defective dog.

Think about how much the S10k project must cost, literally millions, wouldn’t that money be better spent on the suggestions above? How many specialist school placements could be provided? How much training could be given? How much of a difference could that money make on the ground, in front line services, rather than in the hands of Cambridge academics with no concept of what life is like for parents and our children on a day to day basis? They have no idea how hard we fight just to get our child’s most basic needs met.

Speaking on the small issue of consent, what would you actually be consenting to? You would be consenting to your child’s DNA, to be used not only in this project, but also any future projects the S10k team want to give that information to, including your child’s medical records. They say that the DNA data will be anonymised, how is that possible? Our DNA is individual to every single person.

“There is no way we can ever say that a future political leader or scientist won’t use the research for eugenics”

Simon Baron-Cohen (S10k project leader) [Source]

This means, that this research, could possibly be used to prevent the birth of Autistic babies.

Now let’s talk about co-occurring conditions, these are conditions that commonly occur within Autistic people.

There are many co-occurring conditions, and the S10k project claims that it wants to identify genetic markers for them, supposedly to improve diagnosis and develop “targeted therapies”. Conditions such as epilepsy, Ehlers-Danlos Syndrome, and intellectual disability, etc. Lots of our kids have had genetic testing, scientists have been looking into this for years.

10,000 tubes of Autistic spit is very unlikely to even make a small dent compared to what has already been done in these fields.

So this means, they are either being very arrogant, or they are lying.

How is this work going to make changes in support provisions? Medicine? Healthcare? And therefore autistic well-being?

The answer, very clearly, is it won’t.

So what exactly are S10k trying to achieve here? Let’s look at the S10k team. At the front we’ve got Simon Baron-Cohen, a man who is largely responsible for research that perpetuates the myths that Autistic people have no empathy, or that we have “an extreme male brain”. This amongst other extraordinarily problematic fables. This is why diagnostic processes are so outdated and inaccurate. This is why thousands, if not hundreds of thousands of Autistic people are being misdiagnosed or completely forgotten.

Simon Baron-Cohen is responsible for the invalidation of entire generations of Autistic people.

Now let’s look at his team mate. An individual named Daniel Geschwind. Geschwind has a hugely questionable history, starting with the most heinous; his involvement with “Cure Autism Now”. He hasn’t even tried to hide that association.

It gets worse.

When speaking at a UCLA symposium in 2018;

“If we know the mechanism, then we can prevent it. Cure the autism”

Daniel Geschwind [Source]

They basically have an eleven strong senior leadership team, all of which are focused on identifying causes, cures, and collection of genetic data.

Once again, for the people in the back, the key to improving Autistic wellbeing is not in our DNA. It is in better services, improved understanding, acceptance, accommodation, and appreciation. They can find 10,000 Autistics to spit in a tube, but they couldn’t find Autistic people and their families to ask what they actually need right now.

And that is why we suggest #BoycottSpectrum10k.

This letter was a collective effort from the team at #BoycottSpectrum10k

For more information on this campaign, please follow our social media on Twitter, Facebook, Instagram, and TikTok.

To read our full joint statement and sign, please visit here.

For another article about the concerns of the Autistic community, click here.

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.

Verified by MonsterInsights