Many of us as community advocates have dedicated our lives to defending the marginalised and uplifting those that society has tried to hold down. For some of us, this has become our professional job. For others, it is something done on a voluntary basis. Both are as valid as each other. We spend enormous effort on our cause, but in truth, we rarely make space for ourselves. To put it another way; who advocates for the advocates?
Autistic people engaging in community advocacy and activism are just as disabled as the rest of our community. We are not some mythical entities that exist outside of the reality of Autistic experience. We are victimised, we are oppressed, we are invalidated. Many of us have very public facing profiles, and sometimes people forget our right to privacy. It can be exhausting. We have to fight not just for our community but also police ourselves. People online tend to expect perfection. Ironic, given that neurodivesity is almost explicit in its denial of perfection.
Beyond the pressures of being in the public eye, there is the reality of facing the trauma that our community experiences. Many of us fight daily on an individual and community level against the abuse of our community. My first thought, of course, is the Spectrum 10k campaign. Myself and the rest of the Boycott team have shed literal tears trying to hold ourselves together and fight. Another example is the Creating Autistic Suffering series that I co-author with Tanya Adkin. The content of those articles is not hypothetical. It is based on things we have witnessed in our professional roles.
Time and again, we face some of the worst that society gives to neurodivergent people.
I do this work because I love the Autistic community, and I live my work; but I am a human being. There are times when I want to scream and cry and pack it all in. There are times when I feel like an imposter. There are times when I wonder how sustainable it is to get up each day wondering what ableist vitriol I will witness today. I love my work, but it can be draining in a way that can’t be described by any metric I am aware of.
So, why write this? No, not because I can’t cope with it. This work is my calling, and despite the negatives, I wake each day knowing that today, I have the power to make a positive difference for someone. I write this because I want all Autistic advocates (regardless of the nature of that advocacy) to know that I see them. I see you standing up and fighting each and every day. I see you do your best to make sure that the world we leave behind is better than the one we were born into.
Each of us has the power to make change for the better. Our mere existence alters the world in irreversible ways. However, I want advocates everywhere to know that it’s okay to stand back and recuperate.
The reason a choir can sing impossibly long notes is because individual members can breathe while the rest keep singing. In case no one has told you recently; take a breath, the rest of us can hold the note for you.
Up until about a year ago, I still sat firmly in the camp that, while I viewed myself as multiply neurodivergent, I was mentally ill. Over the past year I have been unlearning this lesson, and realising that mental “illness” is completely unquantifiable, and instead, I was suffering because I had been repeatedly traumatised, and then lived in a world incapable of accommodating the particular neurodivergence I had acquired. Psychosis.
People hold on tightly to the idea that they are mentally “ill”, and understandably so. The deficit model of mental health has been pushed on us quite successfully, but what if it’s not the person who is ill?
Consider depression. A person experiences a traumatic event (remember, what is traumatic to me, might not be traumatic for you) and starts to feel as though nothing goes well for them. They withdraw from their environment and isolate. Is this an illness, or is this the human brain doing it’s best to protect itself from trauma?
Now consider that the cultures with live with, particular in western society, actively punish people who have experienced trauma. There is a lack of welfare benefits, inadequate and under resourced wellbeing services, and let’s not forget that humans are effectively judged by whether or not they make the right amount of profit while performing a neurotypical display so as to not make others uncomfortable.
To me it seems clear where the suffering is actually stemming from, and it isn’t the person.
However, let me be clear, this does not mean that people should stop taking their medication. I take medication, and it helps a lot. Attention Hyperactive people take meds to help them focus and perform daily tasks.
What I am saying is that while medication can be an important part of wellbeing, we need to recognise that this pathologisation of our human experiences has (for the most part) normalised our suffering.
In the same way that Christianity told factory workers during the industrial revolution that being in poverty guaranteed them riches in the afterlife; pathologising neurodiversity has told us that we are the broken, rather than letting us turn the lense on an oppressive world.
Sadly, many institutions (medical included) have a tendency to serve the overall economic climate, rather than the people they are supposed to help.
So where do we go from here?
We need to build on the neurodiversity movement and paradigm. We need to recognise that despite our suffering, we are not the sick ones. What is sick, is the society we live in. When enough of us stand up and say no, society is forced to change. We need to recognise the rampant oppression and abuse of power, and seriously consider it’s role in the development of so called psychiatric “disorders”.
In short, brains do what they can to try and protect us from suffering, sadly, society continues to inflict pain.
Life is full of ups and downs. My passion in life is helping people climb back from the “downs” into “ups” that often seem impossible at the time. In order to do this, I had to go through a personal hell and walk out the other side. People often tell me how inspiring I am, which I have mixed feelings about, they also ask me how I did it.
Sometimes I worry that people think my journey was straight forward, with a well defined map that I can pass on to those lost in their own hellscape.
The truth is that it has been very much a trial and error situation, with a lot of unwise decisions, and unkind thoughts about myself.
As the title suggests, a thought I tend to have when things are bad is that I just need to “get my shit together”. Thinking like this is wildly unhelpful. Not only does it not offer any concrete advice for myself to follow, it is inherently ableist. It doesn’t take account of the myriad ways I am disabled.
Another unhelpful thing I do when I am struggling is romanticise my childhood. I wish for my days of innocence, denying the fact that my lack of childhood innocence plays a huge role in my struggles as an adult. It’s easy to convince ourselves that the past is where we belong. It’s important to live in the present, no matter what it looks like.
Self-destructing is something I do when things get really bad. It ranges from pissing off the people close to me, to a literal urge to self-destruct. Infer from that what you will. It’s easy to forget that sometimes our most toxic influence is our own mind.
Perhaps the worst thing I do is hate myself. The truth is, I’ve come a long way since “the old days”, and when I am struggling, I forget that. I am my own worst critic. I convince myself that I am a harmful influence, and a generally shitty person. If you ever catch yourself doing this, it’s okay to ask for a little validation from the people closest to you.
We all need uplifting from time to time, don’t be ashamed for struggling.
I hope that these insights into my own self-critical thoughts are helpful to someone. There are times when I forget that I am a human being, and not machine, existing solely to serve the benefit of others. It’s something many of us do, but I want you to know, it’s okay to be human.
Just don’t let the shitty thoughts rule your mind.
At Aucademy we often talk of a perfect Autistic homeland, affectionately dubbed Autopia. Conceptualised as a place in which all Autistics can lead peaceful and comfortable lives, it sounds like a dream come true; but what are the realities of such a place? Is such a place even possible?
This evening I was discussing such things with a good friend of mine, and one thing became clear. Accommodating Autistics does not necessarily mean all disabled people are accommodated.
Let’s use the UK supermarkets “autism hour” as an example.
In the UK, many supermarkets have an hour a week where they reduce sensory stimuli, and encourage only Autistic people to attend to their shopping in order to reduce crowds. It helps, but there is a wider conversation about only doing this for an hour a week that needs to be addressed another time. We can, however, look at why this can’t be done all the time.
Lower lighting is great for Autistics with no particular intersections of other disabilities, but what of those with conditions of the eye that make seeing in dim light difficult? In our attempt to grant privileged access to one minority, we have removed access for another minority.
This really is the crux of the issue with creating Autopia. Autistic people live at many intersections of experience, and any attempt to accommodate everyone together, will likely marginalise another minority.
A true Autopia would require an individual approach, where each person’s living environment is adapted to there individual needs. It would require a bespoke design.
This however presents an issue with shared spaces. Autistic people represent a great deal of intersections with race, gender, disability, and so forth. The creation of a truly inclusive and safe space for Autistics would require more than sensory rooms and a living situation outside of the grasp of capitalism.
The complexities of creating shared space for all Autistics, both physically, and virtually, is still something that needs to be addressed.
Minority groups from all intersections have been telling us about the bigotry they face within our online community. Non-speakers getting attacked for their use of language when they have no access to Autistic spaces, black and trans Autistics having their experiences ignored and invalidated.
These are just a couple of examples of things that need to be addressed if Autopia is to ever become reality.
Whether we care to admit it or not, the Autistic does have unwritten rules, and some in our community react poorly when newcomers do not understand the nuances of our community. This in itself creates issues of accessibility.
This is personally why I adore neuroqueer theory. Should we not live a life true to our natural selves? We need to encourage Autistics to live authentic lives, not exclude them from our spaces.
This is not to excuse the intentional perpetuation of pathology paradigm views and bigotry, but a comment on the fact that we were all raised with problematic ideas of what it is to be Autistic. Was it not access to the community that helped us change those views, and embrace the neurodiversity paradigm.
There is no “one-size-fits-all” approach to a neurocosmopolitan society. That approach is provincialist in nature, creating privilege for some while marginalising others.
On the whole, I constantly see a great deal of positive growth and evolution from the Autistic community, but like any societal movement as it reaches maturity, the Autistic rights movement has some creases that need ironing out.
Autopia is a beautiful goal to shoot for. It’s time we came together and made it a reality for all Autistics. Together we can build a neuroqueer future, and on that basis, a neurocosmopolitan society.
I was happy to see that Autistic Inclusive Meets have restarted the #ShowUsYourMeds campaign. Campaigns like this are essential in normalising the life-saving medication that so many of us rely on day-to-day.
Stigma surrounding the use of medication, in particular for the treatment of mental health issues, is still widely prevalent in society, with many people feeling a great deal of shame over the use of medication.
Where does this shame come from?
A good place to start is the misunderstanding between being reliant on a medication for your wellbeing, and addiction to a drug. So many people conflate supervised prescription drug use with addiction that it (quite frankly) makes me sick.
Not only does this diminish the very real and terrifying experiences that addicts face every day, but it places a moral objection towards safe prescription medication use on the patient. It’s not just laypeople that do this either. Doctors will happily label people as “drug-seekers” for asking for treatment for very real and debilitating conditions. This particular form of stigma will not change until we move away from the moral judgment of addiction and substance use as a society.
Toxic positivity is also a very real issue when it comes to med-shaming. Attitudes that suggest one should consider all the people who live with a so-called “worse” situation serve absolutely no one. Such attitudes lead to people remaining silent, and ultimately, dying. You don’t have to be grateful for your suffering. Suffering is subjective. It is impossible to judge who has it worse.
Another popular way of invalidating those who need medication is to claim that you experience the same thing, and that you just need to “push through it”. This is a common myth that is trotted out by people with little to no understanding of mental and/or chronic physical health problems. Mental health problems in particular are invalidated in this way. Completely ignoring that many of those conditions change the physical structure of the brain. You can’t just push through it. This is another good way of killing people.
Also, let’s not forget the institionalised patient-blame placed on people. Refusal to treat a person because they can not engage in the expected way is first and foremost, an act of systemic violence and oppression based on deepy ingrained ableism. This is a problem that affects neurodivergent people in particular, for whom services rarely design themselves with them in mind.
The truth is, I could list a thousand reasons why people are shamed into not taking medication, but it won’t change the truth.
Taking medication is vital for a huge number of people around the world. Denying a person access to medication, or shaming them into not taking it, is an act of aggression and violence. People literally die without their medication. Shame belongs firmly on the shoulders of the people shaming ill people into not taking their meds.
I refuse to be ashamed of my medication. It keeps me well. I would be dead without it. Yes, the side-effects have been unbearable at times, but it’s necessary for me to stay alive. I do not have the privilege of chosing not to take my meds.
Anyone out there feeling like their medication is a shameful secret; I see you, and I promise you have nothing to be ashamed of. Stay well, drink lots of water, and take your meds.
This article was co-authored between David Gray-Hammond and Tanya Adkin
Trigger Warning:Some of the research quoted in this article contains person-first language or references to aspergers. While the authors do not agree with the use of such language, we must access the research and statistics available to us.We are also aware that some of the research cites Simon Baron-Cohen, unfortunately it is almost impossible to avoid him when writing this kind of article.There are also detailed discussions of various traumatic experiences including mentions of suicide, addiction, and mental health issues.
This website houses extensive writing on the topic of Autistic people and addiction, poor mental health, and suicidality, but we are yet to answer one very important question; how do autistic people end up suffering? The truth is that it requires falling dominoes of extensive systemic failure and trauma. In this series of articles, we hope to explore some of the reasons behind the development of poor outcomes in the Autistic population. The reasons listed in this article are non-exhaustive, and we would like to highlight that Autistic people are failed repeatedly throughout their lives.
This is alarmingly evident in the suicide rate for Autistic people. In a large-scale clinical study of newly diagnosed adults, 66% self-reported reported that they had experienced suicidal ideation. This is significantly higher than suicide rates among the general population of the UK (17%) and those experiencing psychosis (59%); 35% of those involved in the study had planned or attempted suicide (Cassidy, S. et al; 2014).
Trauma is a significant predictor of poor outcomes in all people, regardless of neurotype. Since the 1900’s research has indicated that there is a strong link between psychological stress in childhood and adult behaviour (Zarse, E. M. et al; 2019). What we can infer from this, is that childhood trauma plays a role in the development of poor mental health and addiction in adults. The question that arises from that statement is; what constitutes trauma for an Autistic person?
There is an consistent theme in the Autistic community that there is no such thing as an untraumatised Autistic. Kieran Rose (2021) has discussed previously how the diagnostic criteria is based on trauma behaviours, rather than Autistic experience. David Gray-Hammond (2020) has also discussed how current diagnostic criteria is based on Autistic people in distress, and as we move towards a world where Autistic people are better supported and accommodated, the criteria will need to change.
There are strong well evidenced links between autism and PTSD, and links between PTSD and addiction, yet for some reason no one seems to connect the dots. There is also significant evidence of a connection between autism and poor mental health and wellbeing, and connections between poor mental health and addiction. Again, no one seems interested in exploring that intersection.
So, what constitutes trauma in Autistic people?
First, we need to consider sensory trauma. Autistic people are subject to sensory trauma on a daily basis, it is not something that can be avoided in todays society, rather we are literally traumatised by living in a neurotypical world (Fulton, R. et al; 2020). Bearing in mind our sensory differences, this is something that is happening to us from birth.
We are experiencing trauma from birth. Some argue that this could possibly be from prior to birth.
We also experience significant sensory invalidation. Think about the number of times a child has said something is too loud, too hot, too busy; the amount of times that has been met with “don’t be silly”, “there’s nothing to be scared of”.
“Society invalidates the Autistic state of being, daily, hourly, minute by minute – every time one of those scenarios, plus a million more occur.”
Autistic people are also at risk of ‘Mate Crime’. Mate crime is a partcular subset of hate crime where vulnerable individuals are targeted by people posing as friends in order to take advantage of and abuse the individual (Pearson, A. and Forster, S.; 2019). Dr. Chloe Farahar and David Gray-Hammond (2021) had a livestream discussion about Autistic people and crime that included discussion of mate crime, the recording can be found here.
“In a 2015 survey, 80% of autistic people reported that they had been taken advantage of by someone they considered to be a friend. This was a colossal leap from the already significant 48% which had been previously recorded and it illustrated a problematic truth: Autistic people make easy targets.”
Unfortunately, mate crime is not just an experience of Autistic adults (Parry, H.; 2015).
A significant concern for Autistic people is bullying. Bullying can happen to anyone, but it is well known that it happens to Autistic people at a much higher rate.
“I really didn’t understand why kids chased me on the playground. All I know is that when they saw me, and they saw me talking to myself and rubbing my hands together and stimming, that I was all of a sudden “marked.””
Physical violence and hateful slurs from peers is a common experience for Autistic people of all ages. Society itself does not cope well with the existence of diversity. It starts young, but only increases in frequency and severity as we grow up, it can turn into things such as financial and sexual exploitation.
Of course, we can not discuss Autistic trauma without reference to behaviourism. For decades, “therapies” such as ABA and PBS have traumatised Autistic people. In fact, in the UK, SEND support is designed around making an Autistic person behave in a neurotypical manner. Considering this, is it any surprise that Autistic people walk away from these experiences with a great deal of trauma (Adkin, T.; 2021). We are literally being taught that who we are is wrong, and that our needs and wants don’t matter.
Often Autistic communication is invalidated because we do not communicate in the same way as non-autistic people. Many of us are non-speaking, communicating through AAC and similar. Many of us also have co-occurring conditions that make spoken communication a challenge. Autistic people communicate differently, we know this because it’s medically defined as a social communication “disorder”. What constitutes a disorder is defined by the medical model of disability and autism research. Difference is always assumed to be less, this is reflected in the systemic ableism and the insistence that different communication is some how less valid.
Many people have thought that they knew me, but see me in light of my mute mouth and wrongly understood that I think and feel nothing. People are too blind to see the person that I am behind my happy smile. I feel that I am loving and kind and also know that I am empathetic and thoughtful, with feelings that can overwhelm my mind and then they cause me to act like an utter fool.
We may not know how to communicate what is happening to us, we may have tried to communicate but it is misunderstood by the people around us, we may have experienced so much communication invalidation that we just stop trying. This can be particularly true of people who do not communicate using mouth words, especially because society has perpetuated a myth that non-speaking means non-thinking. What ever way you look at it, Autistic communication is considered less valid. Often, being Autistic can be used as a reason to cast us out.
All of this means that many Autistic people will isolate themselves from the world, and that isolation starts from a young age. Mazurek, M. O. (2014) stated that greater quantity and quality of friendships were associated with decreased loneliness in Autistic adults. Here’s the problem, Autistic people are in the minority. We do not have access to community as children, especially if we are pushed through a mainstream institution. Even if there are other Autistic people in that class, we do not know what it means to be Autistic.
The double empathy problem tells us that we have better interactions and quality of relationships with other Autistic people as opposed to neurotypicals. Autistic and non-autistic people exist in two different social contexts (Milton, D.; 2012).
“…double empathy problem’ refers to a breach in the ‘natural attitude’ (Garfinkel 1967) that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning”
Milton, D. (2012)
This disjuncture between Autistic and non-autistic communication can be traumatic for the Autistic person (Milton, D.; 2012).
Finally, we need to talk about restraint and seclusion. There are many different forms of restraint and seclusion, but each one of them teaches us from a young age that we do not have autonomy. It teaches us that our communication is not valid, that when we react to situations that we find overwhelming or distressing, we get punished.
An ABA practitioner physically holding our hands still, is a form of restraint.
But restraint has a darker side. As an example, we might look at the case of Max Benson, a 13 year old Autistic child who died as a result of being restrained for over two hours (Vance, T.; 2019). This isn’t just a problem in the USA though, it is happening in the UK also. A 12 year old Autistic child was restrained and handcuffed by police on his first day of secondary school, he was 5ft tall, and multiple police officers and staff used force to restrain him (Halle, M. and Cardy, P.; 2021). I think it is clear why this is traumatic for Autistic people.
Every school in the UK has a restraint policy. Sold as being for “everyone’s safety” while in fact it remains state sanctioned abuse. We have toddlers being restrained into preschool, into environments that cause them sensory trauma. Parents are told “they’re fine once they’re in” by people who have no understanding of masking. If you’re too big to be physically restrained, they use chemical restraint.
David Gray-Hammond (2020) writes of his experience as an undiagnosed Autistic person in a psychiatric ward. He discusses how, due to being a large man, staff chose to chemically restrain him with a heavy regime of antipsychotics and sedatives, rather than address the issues that were causing him distress.
It’s not just adults that are victims of chemical restraint, children under the age of 10 years old have been prescribed antipsychotic medications because it is cheaper and more convenient than meeting their needs.
Seclusion is a problem because it uses isolation as a form of coercion. Children and adults who do not conform to societies neuronormative ideals are secluded for long periods in isolation, seemingly as a punishment for not being “normal”. It’s inordinately unethical, and yet ethics don’t seem to apply when the victim is neurodivergent.
What does all this lead to?
Truthfully, it leads to suffering. Dr. Nick Walker put it best during her session with Aucademy.
The next piece in this series will explore the systemic failings in identification and lack of accessibility.
As a late identified Autistic/ADHD adult, a parent to two children with multiple neurodivergence, and a professional working within the voluntary sector from a young age, I have unique insight from all perspectives.
I have worked within the voluntary sector, starting within the disabled children’sservice, progressing on to mental health, healthcare funding, youth services, domestic abuse, and much more.
For the last six years, I have developed a specific interest both personally and professionally in special educational needs and disabilities, particularly around neurodivergence and the challenges faced by families when trying to access support.
I am dedicating to educating in neurodivergent experience in order to help families thrive by providing insight, reframing, and perspective in an accessible and personable way.
With experience, passion, and an individualised approach in close collaboration withfamilies, I help them work towards holisticchild and family-centered solution
Adkin, T. (2021) Behaviourism damages Autistic children. tanyaadkin.co.uk
Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 1(2), 142-147.
Farahar, C. and Gray-Hammond, D. (2021) Autistic people and crime. Aucademy. YouTube.
Fulton, R., Reardon, E., Kate, R., & Jones, R. (2020). Sensory Trauma: Autism, Sensory Difference and the Daily Experience of Fear. Autism Wellbeing CIC.
Garfinkel, H. (1967). Ethnomethodology. Englewood Cliffs.
Gray-Hammond, D. (2020) Autism and the future of diagnostic criteria. emergentdivergence.com
Gray-Hammond, D. (2020) My experience of restraint in a psychiatric hospital: This is not a love story. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com
Halle, M. and Cardy, P (2021) ‘Overreaction’: Autistic son handcuffed by police on first day of term at Notts academy. Nottingham Post
Hernandez, P. (2021) Who am i? nottootrapped.wordpress.com
Milton, D. E. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6), 883-887.
Parry, H. (2015). Shocking rise of «mate crime»: How children with autism or Asperger’s are being bullied, abused and robbed by so-called friends.
Pearson, A., & Forster, S. (2019). Lived Experience of Friendship and Mate Crime in Autistic Adults.
Rose, K. (2018) An Autistic Invalidation. theautisticadvocate.com
Sinclair, J. (2020) Autism exploitation: How to spot it and how to make it stop. autisticandunapologetic.com
Vance, T. (2019) #ShineOnMax Community-wide Candlelight Vigil for Max Benson, Sunday November 17. International Coalition Against Restraint and Seclusion. NeuroClastic. Neuroclastic.com
Walker, N., Farahar, C., Thompson, H. (2021) What is neurodiversity & why’s it important? Nick Walker with Chloe & Harry: Aucademy in discussion. Aucademy. YouTube.
Wise, M. (2019) The long term impact of bullying. Neuroclastic. Neuroclastic.com
Zarse, E. M., Neff, M. R., Yoder, R., Hulvershorn, L., Chambers, J. E., & Chambers, R. A. (2019). The adverse childhood experiences questionnaire: two decades of research on childhood trauma as a primary cause of adult mental illness, addiction, and medical diseases. Cogent Medicine, 6(1), 1581447.
Autistic people are not okay, S10k has served as a stark reminder that we are treated as a burden upon not just the people that we love, but society as a whole.
Autistic people are subject to woefully inaccurate and outdated stereotypes that do a great deal of harm to us as a community. For a long time the Autistic community has pushed back against the idea of a linear spectrum, with the “severely disabled” at one end, and bright young mathematicians at the other end. Despite this we still have the likes of Simon Baron-Cohen espousing the need to preserve the young men who have mathematical skill, should a cure or pre-natal test be developed. This says a lot about his views on Autistic people as a whole. It’s eugenics, funded by a capitalist society that decides the value of our lives based on our financial productivity. Eighty years since Hans Asperger “saved” the useful Autistics, while dispensing the lives of those he deemed unworthy, we are still fighting for the right of all Autistics to exist, regardless of special skills or capitalist worth. In 2021 are we witnessing Simon Baron-Cohen morphing into the Hans Asperger of the 21st century?
The truth is, Autistic people are more than a medically diagnosed group. We are an identity-based minority, with a rich culture. A culture that we are excited to share with the world, even in the face of the worlds abject hatred of all that diverges from the neuromajority.
We are everywhere, we are your doctors, your lawyers, your shopkeepers, your shelf-stackers. We entertain you as artists, actors, directors. We are your friends, family, neighbours. Even if we aren’t yet identified (largely thanks to those inaccurate stereotypes skewing the diagnostic process).
We are human.
We have thoughts, feelings, emotions.
We have deepempathy and compassion. It can be overwhelming. S10k is overwhelming, which is how it felt last week when Spectrum 10k was announced, by non-autistic researchers, led by two non-autistic men who have strong links to organisations abhorred by the Autistic community, and supported and promoted by white men, cure culture, and an all round attitude of being pro-eugenics.
S10k has been peddled by people who are not autistic, don’t understand autistic culture, and don’t even understand the nature of this research. Indeed, nobody understands the nature of this research because of the secretive nature of those in control. The truth has been obfuscated in an attempt to gaslight Autistics into giving their DNA to those with ill intent, or for future use by those who mean us harm.
“There’s no way that we can ever say that a future political leader or a scientist won’t use the research for eugenics.”
Are we really at the point, in 2021, where we have to beg for our right to exist?
Because if that is the case, we are collectively pleading with you to boycott this study.
How can we ignore the fact that Baron-Cohen and Gerschwind have previous ties to Autism Speaks and Aims2Trials. Both of these groups are known to either look for a cure, or fund those who are.
Why are we pleading? The effects of this betrayal by society have taken a huge toll on our collective mental health. In the week since this has launched, the damage that has been done has been immense, imagine what further damage this study could do if left to fulfil it’s aims.
The study claims to be looking into the causes of poor wellbeing in Autistics. They already know what causes it, and it’s not in our DNA. It is, however, quite possible that the thought of our parents having the choice to abort us does cause the poor wellbeing they claim to be so invested in preventing.
Imagine what the Autistic community could do with that money; We could train the whole of the U.K on improving mental wellbeing for Autistics, training on supporting us in a disabling environment.
Are you Autistic? What would you do?
Will you stand by while our DNA is misused by those who seek to destroy us?
Please, do not give your DNA to these people. Do not allow them to destroy the rich culture that we have spent decades cultivating and nurturing.
The Autistic Community.
This article was a collective effort by the team at Boycott Spectrum 10k and the Autistic community at large.
Please join us Twitter tonight at 7pm BST by following the link below.
Since autism first entered the zeitgeist, and probably before, research into it has focused largely on what causes it. The reason for this is clear to pretty much the entire autistic community.
Rather than embrace the existence of a neurominority, and validating our right to exist, science largely wants to eradicate us.
Now with the looming spectre of Spectrum 10k (S10k), never has it been more obvious that our wellbeing and our needs as Autistics do not matter to the Autism Research “Industrial Complex”.
Looking at our genetics is what attracts the big money, and (as in the case of S10k) they won’t guarantee what will be done with that data.
The general population worships the genetic research being done, believing only that they are helping us. While we, the neurominority, beg them to help us improve our quality of life, our wellbeing.
While we beg for scraps of validation and recognition of our needs, groups like the ARC in Cambridge ignore us.
Certainly, their is a premise for a dystopian fiction novel in this scenario, that would require little more than an accurate glance into the future. One need not embellish the truth to tell this tale in a truly terrifying fashion.
Perhaps, then, you can understand why the Autistic community is suffering so greatly right now. I am watching my fellow autistic advocates burnout and shutdown in the wake of yet more research that cares not about the lives of our neurokin.
I will not stand idle while this community is decimated. This community saved my life, I am certain it saved countless others. Now is the time to unite, and shift the scientific paradigm to one that listens to the minorities it claims to act for.
I will not be erased, and I will not allow my fellow Autistics to be erased either.
I believe a future without Autistic people is a bleak one. A world without diversity is a world without a soul.
Diversity is at the heart of any healthy society, civilisations that fear diversity are known to crumble. S10k goes beyond the very valid concerns of the Autistic community, it is a symptom of a world that fears it’s own diversity.
We must root out the ableism endemic to our communities, and the world at large.
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