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TW- depression, diary’s and the art of consent (prof SBC and his latest study-UPDATED) ...



A diary. Something so private that those pages 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 write, safe in the knowledge that no one will read our diary and our diary won’t judge us.

But what if the diary got into the wrong hands? 

It’s something that all diary writers have feared, hiding their diary away, too afraid that people who don’t respect their consent will discover their diary and read it… and judge them for it too.

What we never anticipate, is that we could… die… and still have our consent betrayed, and have our diary, not only read, but over analysed and politically dependable for a medical research project at a major university with a world leading expert at the helm, dissecting  all of our private thoughts and feelings. Judging us and our most private thoughts and experiences.

That’s reality for Caitlyn (rest in peace darling girl).

 

Caitlyn was just like many of us who keep dairies. She was 16, and autistic and she kept a diary, sharing her hopes and fears. She was a very private person according to her friends. She was a victim of depression and this cruel disease stole her life in a heartbreaking way far too young, while she lived at a top boarding school. 


Now that nightmare many of us diary keepers have, has arisen,  @Cambridge_Uni researchers are using her private diary in a new research study, trying to find answers as to why autistic teens commit suicide as some sort of preventative.  (THANKFULLY, THIS STUDY HAS SINCE BEEN PREVENTED NOW THAT CAITLYNS PARENTS REMOVED THEIR COERCED CONSENT! However, below, is why something like this should never happen again)

 

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. 

Not only to dear Caitlyn but her family who are grieving and so vulnerable right now-too vulnerable from grief even - to truly give consent to something like this that can be seen as coerced in the name of helping other autistic teens.

 

Yes, we all want to help autistic teens-but this is not how you do it. 

 

It is understood that her parents gave consent. This is not against them, I believe they absolutely deserved better than this. The family themselves probably feel very vulnerable after what happened, grieving is a horrific process. The best advice says to not make big decisions when you are sad or when you are in the raw stages of grieving.  To me,   It feels like Caitlin’s family were taken advantage of- their grief  was preyed on in the hope they would say yes, because the researchers manipulated a situation and family grief to get a yes - even if, ordinarily, this would be a no - for example, if she were alive.

However Unless there was specific permission given for this to happen by Caitlyn before she passed, this seems deeply, deeply unethical to me. 

 

The human right to privacy doesn’t vanish or stop when a someone passes away. Except, apparently it does, if you’re autistic and can’t consent for yourself. 

 

 I understand the intention of the research may be good, but personal diaries are extremely private things and this young woman can't consent.

 

‪So if not this, what?

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.

 

Additionally - I dread to think  how much darling Caitlin’s words will be twisted to fit the autism agenda and political need. So much context lost and root experiences ignored so they can just conclude something similar to “she was depressed because she didn’t try and should have had therapy to change every part of her self to not be autistic” or whatever other ablest similar rubbish they normally conclude. Sure they may not be ableist in the conclusions however because she is sadly dead, she cannot provide context and therefore her words will be twisted, whether intentionally or not. 

 

Next I find gross is that these researchers are not autistic. If this tragedy of consent is going to be allowed to continue, 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. 

 

How will this infringement of consent and betrayal of boundaries improve the care, treatment & support for autistic children & teenagers? 

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, who consent to showing them their personal diaries 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.

Dear Caitlin, I am sorry this happened to you and your memory.

 

Rest in peace, and I hope you are up there sparkling like you did on earth.

 

To everyone else like Caitlin, or like me… who have depression or have been depressed, 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.

 

Remember-as long as you are trying your best, always trying to be good, trying to improve, learning & trying to make amends where it’s safe to do so, then no one can justifiably fault you. 

If they do fault you when you try your best, then that’s on them, not you. 

 

It says more about people when they are cruel or intentionally misunderstanding, than it does about the victims. 

 

The reality is that not only can you work hard & jump all of the hurdles & do all the right things & still get no rewards; but you can do all these thing & suffer immensely too-through no fault of your own. Lives can’t be brought back, once they are sadly lost & so many lives are lost through misunderstandings of needs; Gaslighting, hatecrime, suicide, medical blunders, abuse & ableism-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.

Depression and mental health issues can make it so hard to look at life’s hardship and think ‘there’s a point to all this that I’m missing?’ 

I get it.

I’ve been there too. However 

If you know what it’s like to feel your body crying, to feel something so wrong within the depths of your soul that it screams at you every moment of the day?

If you do & yet you still TRY to face the dark, with the light too, walking the tight rope; I have faith in you. I hope you have faith in yourself and your community.


If you listen to the screams & yet TRY to dance within the light, TRY to claw yourself out the dark pit because you can’t help but think ‘what if this time I’m wrong?’ What if it gets better?


I salute you. It takes massive inner strength to begin that climb-I have faith in you. I believe you and there’s no shame-and no secret is too big to get help. Please have faith in the people who will help protect you if you fall.


If you think this- Don’t listen to the lies of the past. You don’t live there anymore. The future is brighter and the future is more understanding than ever before - the world is changing because people are sharing their story’s. 


Some stories are for our diaries and should always stay private if we don’t consent to more -yet our other stories, can change the world. 


Try to Let it empower you. 

Maybe it won’t be an all singing and all dancing technicolour dream coat of  support once you share your secrets or your dreams straight away-but remember with time, it still could be.

That’s the power of yet

Good things haven’t happened yet

But they still could

I haven’t made progress yet

But I still can

So when past lies challenge you by making you believe there’s no point in sharing your sorrow or secrets with trusted people… think again  ... what if...?


What if the past was wrong about you and your strength?

What if the past was wrong about your community or loved ones?

What if this time sharing your soul, IS amazing?


What if this time you get peace?


What if this time you get what you deserve?


What if, this time life sparkles back, the icy numbness thawing with warmth?


What if, this risk starts to allow you heal?


My life is one of continuous agonised positivity - hope where all is hopeless, and I think it’s beautiful because in this tightrope where we all dance together, balancing between one reality to the next, is where all of humanity is connected. 

We’ve all been through great hardship and horror but we’ve all been through moments of joy or peace too- no matter how brief-that shared humanity is what makes all the hardship and all the agonised positivity so worth the fight. 



Every person should remember this when claiming to help, work with, or judge people with mental health issues: we are human, and have human rights just like everyone else... Yet this simple facts seems to often be forgotten or lost in translation when judging our needs or our behaviours or why we need or do what we do.

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. 

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.

So many thought we lacked humanity, and they successfully convinced the world of our lack of humanity, to justify treating us so badly with a lack of human rights to access or humanity. for example, would they do this to someone who was not Autistic or disabled, without their consent? I doubt it.

They still judge oppress and discriminate against us - the stigma is huge in society regarding mental health issues.

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- every single one of us.

We are not evil

We are not burden

we are not loveless or heartless or compassion less

We are not manipulative and cold 


We are human surrounded by trauma abuse gaslighting and oppression and a constant betrayal of our consent and our boundaries.


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 consent to be respected, even in death.


Rest in peace to all our lost souls.


Peace x

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