Story time:
“Please… please help me” I’m begging, tears in my eyes, crouching, caving in on myself in my grief as I sit on my knees, arms raised for mercy at the hands of a professional who stands before me, frowning as they check a clipboard for notes. “Nope. You don’t have an appointment” they say curtly before turning away “no PLEASE I NEED HELP! it’s urgent!” I cry and they tut, “well… what seems to be the problem? There’s a long waiting list…” My hands drop and the tiniest rush of relief floods through me, “well, I’m autistic and I have PTSD and - “ she cuts me short and shakes her head, “no, people with autism cannot be helped with mental health issues so I can’t help you”, and just as the shock travels through me she slams the door in my face… I lay on the floor scream crying, feeling like I had exposed the most vulnerable parts of me only to be attacked even further by the ones supposed to help.
I had this nightmare once and it haunts me to this day. What if…? It came true? But then I woke and the sickening sensation came to life…
That nightmare is already here, dressed as the day dream.
It’s a nightmare for me and yet reality for most of us who are autistic or trying to access mental health support through CAHMS.
A nightmare of one, shouldn’t be the day dream reality of another, like some twisted version of ‘one persons trash, is another’s treasure!’.
In this reality there’s no treasure… it’s just trash.
In fact CAHMS - the go to organisation for mental health support - deny support for autistic people because they don’t recognise mental health issues in autism. They flat out deny autistic people access.
This needs to change. Thousands of autistic teens and children have been let down and left to harmful defence mechanisms and prolonged worsening of their mental health issues, with no care of their wellbeing from CAMHS. Reality? There are countless children D13ing, and people at active harm, due to being refused care.
Because they are autistic.
No other reason: there’s also no excuse.
CAMHS are not only refusing access based on identity and diagnosis which is illegal discrimination but they are also refusing to give access to even acknowledge their own eligibility criteria.
When i was in my early 20s i was going through some serious mental health issues- undiagnosed phycosis, diagnosed PTSD, and depression kept me fighting for peace every moment of everyday and we tried to get me referred for help, because the flashbacks and the inability to tell facts from fiction was overruling my life. I’m not alone.
So many autistic people and our families reach out to CAHMS, desperate for support and access, only to be ripped apart with denial of both our mental health issues and also our human rights to access.
The trauma and fear it takes to finally ask for help is unmatched… but to ask and be turned away because of who you are as a person is horrific discrimination and inexcusable.
As I sat in my GPs office waiting to express my darkest fears and needs to someone who didn’t care if I live or die… I felt fear creeping over my skin like hundreds of scuttling insects biting down, legs scrambling, jaws clutching at my veins. I had sat in that waiting room at the GP desperate for help with my mental health, my undiagnosed phycosis that was making me doubt reality and not trust or form new memories. My PTSD causing havoc with flashbacks and depression reigning king. I was desperate and honestly felt like I should have been locked in a padded cell. I had no hope. But neither it seems, did they.
The realisation that CAHMS wasn’t an option even though I had constantly heard of CAHMS being the go to place for mental health support absolutely flabbergasted me. And in the waiting room while we waited for whatever support was available on the nhs the fear of reality that I really was alone - made me realise the cold dread within me too- because while CAHMS said that autism doesn’t have mental health issues - my painful memories my PTSD and my experiences with depression and phycosis were all too real.
It was odd, curious even, for me to fear the place i had felt safe. yet in that GP office - the place that previously has saved my life so many times with my rare diseases - I suddenly felt exposed and targeted. Dipped into a pool, bleeding with hungry sharks ready to rip me apart, all while spectators watch and say, “you’re fine the sharks aren’t real and neither is your bloody wound, just swim to the surface like every one else! You don’t REALLY need help!”
Back to the story time:
The chair squeaks as I sit and I wince. A mess of thoughts in my head riddled with traumas and holes of memory loss as I try to make head or tail of each trauma and thought.
My words flow. Whispered from within the depths of my soul long lost is shadow, fear gripping my throat, suddenly cold. Out come my inner most secrets, my darkest, most private fears and I feel like I’m both flying and falling and being crushed and buried all at the same time. I look up suddenly numb to what I am saying because it’s all just facts and I process information fact and then emotion or memory. I’m so exhausted that I can’t even cry anymore. They asked for my story and so I share it. But to do that I must divulge the terrible tragedies like that of a news reader because otherwise I will breakdown and not be able to share with them just how much hurt I feel. Yet my autistic processing is not what they’re trained to see and so I am often not believed because I don’t act as if I’m Traumatised or depressed.
“No. None of this is true, though is it? I think you’re making it up. Mind over matter. try focusing on positives” the so called professional says, shifting their spectacles to peer at me with suspicion. “I believe you believe it to be real. But you must realise that those things didn’t happen. You weren’t gaslighted. You didn’t forget reality. You’re just tired and overwhelmed. It’s not Trauma”
Suddenly, the ground is swallowing me and I am trapped in the darkness where no light penetrates first.
She… thinks… what?!
Not… real?
BUT ALL OF IT IS REAL
How does telling the truth, and allowing yourself to be vulnerable and emotional about an injustice so you can better learn through it to become stronger, equal not being positive? the two can co-exist; i know this because i am a VERY positive and mindful person, but that is exactly why I CAN learn from my emotions and not feel the need to hide from the root and ignore the hardships to the point of never improving my wellbeing or emotional maturity! its a separate issue with toxic positivity, but still one that grates my gears!
I have memories. Flashbacks. sliding puzzle pieces crashing together in a horrific cacophony of disastrous consequences. I know my mental health issues are real - just like my traumas and Traumas and roots that caused them are.
IT IS ALL REAL.
Suddenly, I’m a shell of who I am. What I felt now only a fraction of what I was before. It DESTROYED ME. And yet… I still had access to something, even though GP basically said “no!” As they refused me access.
These professionals can read your life and your secrets like a private diary… so private that they can learn and know your inner most thoughts and beliefs. Your life experiences, hopes dreams and the catastrophic feelings that spin you around life’s emotional orbit, all there providing therapeutic release for us as we share our stories to them. We share, so afraid of judgement and so sick of the possibility of being trapped once more by darkness, and often as they gaslight us, we are no longer safe in the knowledge that our stories - that are shared as if told straight from our diary’s - will no longer be private and will harm and judge us.
It’s bad enough when we can access help but to be turned away entirely is gross injustice.
And I am appalled. Sickened at the Grotesque injustice and lack of ethical morals that has made anyone think this was a humane thing to do to autistic people.
CAHMs should have been the right service for me - and the right service for thousands of other autistic people who like me, who were or are dealing with mental health issues - yet instead CAHMS refusing access for autistic people based on us being autistic… which is wild.
No access to therapists, psychiatrists or psychologists, no one to prescribe medication or appropriate therapy. It is impossible for so many autistic people like me to access the help we need but only because we are autistic. They don’t accept ANYONE who is autistic.
How is that not discrimination?
To deny treatment is a dangerous slope and we all know what happens to autistic people without support, when all else fails - they get taken advantage of in a world designed to Traumatise them, only enhancing the defence modes - such as a worsening cycle of mental health issues, and maybe even introducing new symptoms or traits like self harm or su1c1de ideation.
Not only to the dear autistic people impacted, but to their families who are grieving and so vulnerable right now-too vulnerable from grief even - to truly give consent or access support for something like this. So easy to be pushed aside and trampled in their unsupported quest for help because the powers at be, see it fit, to abuse us and rid us of our power.
CAHMS need to understand the baseline of Ttrauma for autistic people is far higher than the baseline for non autistic people and therefore we are far more prone to mental health issues, while also displaying traits or symptoms and defence modes diversely to researched reactions.
We all need rest to recover, and yet we guilt ourselves so much when we even try to let ourselves take a break.
Non autistic people when reaching beyond their baseline for stress are allowed to access mental health support through cahms- that’s their rest and recovery - it’s not ideal with a long waiting time and gaslighting in itself, but it least it’s some what accessible and they’re allowed to access it.
That’s not the case for autistic people.
So non autistic people are given more opportunity’s to rest and recover from their baseline of stress especially with support from CAHMS- but For Autistic people though, not resting to recover adequately can be incredibly harmful to our health wellbeing and mental health, causing shutdowns of functioning and even poor health issues, because we reach the burnout and Ttrauma stage far quicker than neurotypical people, so even when it makes sense for a neurotypical to keep going-they expect us to keep going, too-when it is dangerous for us to keep going. Everyday for every little things We autistic s are operating at a trauma level non autistic people don’t reach unless they experience severe distress and injustice over a period of time. Yet we are the one who cannot access mental health support when we are clearly operating at a severe trauma baseline all the time? What else is meltdowns and shutdowns pf functioning if not a severe processing issue caused by trauma?
Rest to recover our processing and functioning capabilities is vital and should be accepted as part of the daily transitional care process to best enable us to be our best. Likewise, challenging what trying our best and succeeding should be part of our daily routines too-because what helps neurotypicals and what success is accessible to them-is not the same for us; and we can still succeed and find a way to thrive and be our best while challenging those misconceptions of what helps us, and having adequate time out to recover.
Yes, we all want to help autistic people-but this is not how you do it - we need mental health support that understands the diversity for autistic people while also understanding the intersectionality of autism and mental health issues like ptsd and how our processing impacts all of it uniquely.
how could we help CAHMS and services learn how to help autistic people so autistic people can access their support?
Please sign this petition.
Please sign the list of people let down by refusal of access to CAHMs.https://www.autisticinclusivemeets.org/post/a-list-of-all-young-people-failed-by-child-and-adolescent-mental-health-services
Please support autistic inclusive meets - an autistic run charity for autistic people - who are among those leading the charge to empower autistic people accessing mental health support through CAHMS - https://www.autisticinclusivemeets.org/post/online-protest-to-hold-camhs-to-account.
For the researchers involved with how to help autistic people- they MUST talk to us!
Talking to actually autistic people. Plenty of autistic people of all diversity, would love the opportunity to give studies insights into a range of issues and mental or physical health, share our lived experiences and thoughts to empower understanding. many autistic people are happy to- you know, just as long as it doesn’t contribute to eug3n1cs or the like!
Yet, Researchers seems to deny the main tool at their disposal when researching autism - and that is - actually autistic people and their lived experiences. I sometimes wonder if this is a misguided way to make sure that not enough changes in our ableist world to ensure a whole load of misconceptions stay in control of the narrative of autism needs and rights. Society has to spend less money on us, if they can justify that we don’t need it thanks to misconceptions and stereotypes that routinely dehumanise us.
at the very least it should be done in a by relatable autistic people who can see & translate the patterns and nuances, and use the information for something positive that doesn’t bend to a political autism agenda. But that won’t happen. Everything bends to a political agenda when it’s that high up. We like to think it doesn’t, but it does.
We need to ask questions too-
How will this infringement of consent and betrayal of boundaries improve the care, treatment & support for autistic children & teenagers?
How does discrimination and denial help and where is the alternate support? How accessible is it?
Will there likely to be clear benefits to other autistic children & young people from the research?
What can they find there that they can’t find in anonymous autism studies by autistic people?
Surely they would have more useful insights offered by speaking to autistic children & young people about their thoughts & feelings, on an anonymous consenting case study basis. Then- they can provide context and more data for research too, and still feel safe divulging such secrets on a case study anonymous basis. All tk help researchers understands the diversity and why autistic people need this mental health support access from CAHMS - and a better systems of care too.
Dear all the people who have been impacted by these tragic times trying to access mental health support from CAHMS. I am sorry this happened to you.
I hope you are still finding ways to shine, still understand your inner beauty and still appreciate just how much worth you have, and I hope you can still find new ways to sparkle now, like you did in the moments when you felt happier and safer.
I hope you find ways to remind yourself of your worth soon.
Please don’t give up on your future.
the cruelty of depression is how it corrupts time.
It puts your mind ahead of itself so that it feels like you are looking back at the present moment with a sense of loss.
It manipulates you into grieving for what you still actually have. .
it challenges your perceptions on how you see yourself & how you think others see you.
It makes you believe that you’re worthless & hope less. You believe your loved ones would be better off without you... even though all of this couldn’t be further from the truth...
It’s a vicious circle that can feel impossible to escape-but I - like many other survivors of mental health issues & depression, can confirm, that it IS possible to escape the torment of depression-with time.
For those of you struggling with your own #MentalHealth issues, #Anxiety #Depression etc, please know that I see you, I feel you, in a way, I once was you & now I’m the happiest I’ve ever been, in a good future I was convinced was impossible.
Please don’t give up on your future.
Please know that your existence has so much value to the world, even if you don’t feel it.
Please know that one day, you’ll feel it, the simple joy of being content. The joy will be so over powering that you’ll remember the all consuming depression you once felt & think of the life lessons learnt that made you stronger.
One day, waking up will be easier, & surviving will be great! One day, you’ll realise your enormous self worth, & you’ll learn to love & accept yourself- you just need time. .
Now a gentle reminder that talking about your feelings, & encouraging others to talk about theirs, is always a good thing. It really can save lives.
It's ok if the only thing you did today was breathe, even breathing gets hard. You can completely recreate yourself. Nothing is permanent.
.One breath, one conversation, at a time. You’re not alone💝
Try not to forget your worth. you deserve to reward yourself with self love.
Lives can’t be brought back, once they are sadly lost & so many lives are lost through misunderstandings of needs; Gaslighting, hatecrime,su1c1de, medical blunders, abus3 & able1sm-But lives can be improved, changed & empowered if we all try more to better understand the needs of our country’s diversity. Choose love, education & empowerment.
There’s a long way to go for access of mental health services… Still, we will fight for change!
We must demand that CAMHS stop discriminating against mentally ill autistic children and teens.
We must demand that they offer treatment and help instead of leaving vulnerable kids to suffer long term Ttrauma.
Please sign and share to help make sure autistic children with mental health issues can access the support they desperately need.
remember this when you judge people with mental health issues:
Psychiatrists used to speak about Autistics as if we were evil and inhuman.
Ivar Lovaas said we were in the shape of a person, but lacked personhood and warmth.
We must not believe these misconceptions and stigma about other people, if we agree they are wrong about us.
We are all human and diverse, these stigmas are wrong about everyone no matter how we present.
We are ALL HUMAN.
As humans we deserve access like all other humans.
Historically we have faced violently dehumanizing ableism that is still routinely directed at people with Schizophrenia, Borderline, Narcissitic, and Antisocial Personality Disorder diagnoses.
Psychiatrists called us cold blooded & incapable of compassion.
They called us manipulative & emotionally explosive.
They believed we were entirely self-centered and incapable of love.
They still judge oppress and discrimination against us - the stigma is huge in society regarding mental health issues.
Most of us can see it’s wrong- what makes any of us think it’s correct to assume these stigmas for people with mental health issues?
We are human, every single one of us.
We are not evil
We are not burden
we are not loveless or heartless or compassionless
We are not manipulative and cold
We are human surrounded by Trauma, trauma, abuse gaslighting and oppression.
We are human even if we are autistic
We are human even if we are disabled.
We are human even if we have mental health issues
We are human even if we are under privileged
We are human and we deserve our human rights to be respected, and WE DESERVE ACCESS.
Rest in peace to all our lost souls from CAHMs lack of access.
Peace x
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