Autism and Abuse: How Autistic Acceptance Helped Me Move Forward

For World Autism Awareness Week, we are amplifying the voices of autistic survivors on our blog.

This post was submitted by Jessica Benton.

Content note: abuse (including, but not limited to, bullying and sexual harassment), assault, brief mention of suicidal thoughts, gender binary

I grew up not really understanding why I was the way I was, and I was treated pretty terribly throughout school. It left me wondering what was wrong with me and why I couldn’t be like everyone else.  In infant school I had a lot of trouble connecting to other children and interacting with them, and in junior school I tried to make friends but I didn’t have the same social skills that other kids did – I would talk a lot about special interests and if I was happy or excited I’d rock back and forth and flap my hands. I would get strange looks and the other kids would avoid me.


Secondary school was when it all came to a head. There was a group of girls who would verbally bully me and spread rumours about me, and boys who would sexually harass me by doing things like grabbing my chest. When I was 14 depression and anxiety took hold and the bullying was at its peak.
 

One day I completely broke down and I was sent home from school. That day had involved more of the same bullying but it just pushed me over the edge – the girls were talking about how they had taken a mug shot of me and posted it to Facebook, something which I never found out was true or not. The boys were pulling my hair and trying to push me over or touch my chest.

My parents contacted  the school straight away. A school assembly was held for the boys in the year and although I wasn’t mentioned by name they were told about how serious sexual harassment was, and the girls were dealt with separately. I lived in fear of what would happen after school. I didn’t see myself having any friends or relationships, I couldn’t trust anyone to not treat me the same way. I had grim thoughts and didn’t think I would live past 18, but the combined efforts of my true friends and family helped me to turn things around.

When I was 15 I came across an online autistic community of activists – they were ordinary people on the spectrum who championed autism acceptance. They spoke about neurodiversity, which accepted autism as a natural difference in human brains, with autistic people needing to be accepted and accommodated by society instead of being looked down on or viewed as an abstract mystery to be solved by the next medical breakthrough. 

The ideas of acceptance, autistic pride and diversity, without exaggeration, saved my life and made me a happier person. Autism activists speaking out and campaigning helped raise my self-esteem, and now I want to do the same for other people. I am now 19 and therefore lived past the age I once thought I wouldn’t. I have realised that the bullying and harassment I experienced was not my fault and that I didn’t deserve it. Society had lead me to believe that I, as the ‘freaky and ugly’ one deserve to be treated in an inhumane way, because sections of society maintain the mistaken notion that autistic people are less than human and are inferior.

Disabled women are more likley than others to be sexually harassed, assaulted or bullied whether the perpetrators know explicitly that we are disabled or not. We are told by society and media that we should be thankful we are receiving any attention or notion of our being desirable to others, so we should tolerate such treatment. Because there is still an underlying notion that our lives are lesser.  For anyone reading this, I tell you now that you don’t deserve to be treated like that. Disabled women have the same rights to control over our own bodies, emotions and lives as our non-disabled counterparts. Disabled women (and men!)  have rights to be heard and taken seriously, to be included in feminism and human rights activism. We have the right to love freely and be loved. This message goes double for disabled people who are LGBT+!

I made a film with Fixers, the charity which gives young people a voice, telling my story and explaining how neurodiversity and autism acceptance have helped me to move forward. You can watch it here:  https://www.youtube.com/watch?v=myUM7YNEg-s 

Thank you for you time!

If you have been affected by this post, or would like help to find accessible services in your area, please visit our support page by clicking here.

Making Headlines

For World Autism Awareness Week, we are amplifying the voices of autistic survivors on our blog. This post has been submitted by Alanna Rose Whitney.

Content note: abuse (including, but not limited to, gaslighting) and disordered eating

It’s hard for me to talk about the abusive situations I faced as a child, both because I know so many other people who have been subjected to so much worse than I have that I feel guilty for taking attention away from their stories, and also because it re-opens old wounds that will never fully heal due to persistent gaslighting and denial of my perception of those events by perpetrators and witnesses alike.

I did just that though, almost two years ago now. I talked about an incident that still makes me gasp and recoil in the retelling nearly two decades after it happened. And doesn’t it figure that I was met with more erasure and compounded abuse as a result?

In the summer of 2015 I spoke with a journalist from the Washington Post who had been flown out to interview me for an upcoming piece on Autistic acceptance. I was followed around and photographed and throughout the day answered questions about neurodiversity and aspects of the activism I was involved with. And I thought I was being listened to. I thought that this article could help to highlight the difference between fearmongering “awareness” and the counter-movement to promote acceptance and love. But I was wrong.

Besides the complete exclusion of at least one other more prominent activist with far more experience and insight than myself, the final product was all incoherent fluff intercut with giving a platform to parents who hope to erase autistics from existence. It was not well-recieved by the Autistic community.

However that wasn’t the part that hurt the most. Neither was the way they portrayed me as “quirky” or the stream of online comments about how I wasn’t really autistic enough or completely off-topic, how I could be pretty if I lost some weight. What really hurt was the opening line, which made light of a seriously traumatic experience that I had never opened up about before, which failed to even address the commonality of the issue – let alone confront the gravity of it’s impact.

The third line of the article reads: “Anchovies on pizza could send her cowering under a table.” That reference is never elaborated upon and I’m actually crying re-typing it. The whole first paragraph reeks of condescension, but the dismissive and derisive tone of that one sentence really stings.

Here’s why…The story is all-too-familar to most autistic people; we frequently experience physical violence (usually accompanied by verbal/emotional abuse) due to what is often referred to as “picky eating.”

When I was seven, my father took me to visit some family friends who had rented a trailer up in cottage country somewhere in rural Ontario, Canada. In fact, their daughter, who was my age and non-autistic, just recently passed away from a drug over-dose, found in a bus station all alone – but that’s another sad story entirely… This story begins with a group of happy “campers” gathered around a picnic table, laughing and drinking and deciding it would be easier to order pizza and direct the delivery slightly off the beaten path than it would be to fire up the barbecue and cook something. The toppings were picked and when asked, I reminded my dad that I could not eat anchovies, that I had never been able to handle the taste, texture or smell of any fish or seafood (nevermind my aversion to all meat and eggs, which I usually choked down anyway for fear of repercussions). I was told, in an angry tone, that I could just pick them off the pizza when it came. I responded to explain that I would still taste and smell the oily residue and that I would not be able to make myself swallow even that. I was scoffed at, laughed at and called a brat – so I meekly excused myself and said it would be okay to go to bed without dinner, that I would just retreat to the trailer to read.

But I had barely opened the first page of my book when my father burst in, fuming with rage and growling about how I had made him look bad. In the midst of this he had grabbed a large metal spoon from the kitchen and the moment I tried to speak he whacked me sharply in the kneecap with it. Of course then I started crying from the pain, which only made him angrier, but he set the spoon down and said he was sorry. He tried to convince me to come back out and eat the pizza, tried to explain that he had overreacted because he was hungry and tired and buzzed from a few beers. But I was scared and hurt so I started edging away, scooting backwards until I was pressed into the far corner under the table. And when I refused to come out from under there, seeing through his feigned gentle coaxing, he got mad again. He reached forward and pulled me out by the shoulders and then grasped me by the throat and lifted me about two feet off the ground. He didn’t quite shake me, but squeezed my neck for more than a minute before he set me back down and after realizing the line he had crossed I was left on my own to cry myself to sleep without being forced to go back outside to eat. It didn’t end there though, because upon arriving home I told my mother and begged her not to make me visit him again – but she refused to believe me because my dad had “beat me to the punch” by telling her I had exaggerated “like always.”

It was not the first or the last time that I got attacked for being unable to conform to expectations of my eating habits and it was not the first or the last time that I had sought refuge by hiding under a table.

Even that sentence of the aforementioned article was not the first or the last time that I have had my words ignored, or twisted. Being familiar with the term “gaslighting” hasn’t stopped me from being subjected to it. Being articulate and labelled “high-functioning” hasn’t stopped me from having my voice stolen or spoken over. Being aware of how wrong it was for adults in my life to have violated my bodily autonomy and sense of self in a great variety of ways hasn’t lessened my struggle with disordered eating (orthorexia, bulimia, etc) or made it easier to trust or to be touched.

This story doesn’t have a happy ending, but the closest thing to it is the #ActuallyAutistic community full of other highly sensitive people who have been treated the same way and who are all working together to change the conversation about us – about autism – to include us and to prevent the same kind of destructive, abusive behaviour from damaging the next generation of autistic kids.

Every April, we go #REDinstead to promote #lovenotfear and if you’re reading this, I hope you will consider joining us <3

If you have been affected by this post, or would like help to find accessible services in your area, please visit our support page by clicking here.

Autism and Abuse: The Result of Being Told You’re a Burden

For World Autism Awareness Week we are amplifying the voices of autistic survivors on our blog.

This post is by one of the co-founders of Disabled Survivors Unite, Ashley Stephen.

Content notice: Abuse, mention of suicide

When I was nine years old, my psychologist told people to tie me up and break things I liked until I “calmed down.”

I hadn’t been diagnosed with autism yet, but I doubt the reaction would have been much different if the psychologist had recognised what was happening as an autistic meltdown. It didn’t matter the reason – to her, I was simply too much. Shortly after I was tied up, I tried to kill myself for the first time. Between the ages of nine and twelve, I tried at least a dozen times.

You see, every form of abuse I’ve been subjected to has always been followed up with the reasoning that these things only happened due to my being “too much.” By the time I was diagnosed at seventeen, I had been abused so endlessly that I genuinely thought this was how people were supposed to interact with me. I didn’t understand I could ask for things, like help or kindness or for my basic needs to be met. I had known for years that things were better if I didn’t speak, so I had mostly stopped. I didn’t understand why I existed, only that my family were very upset when I tried not to.

These are things I still carry with me daily, all due to abuse, and I know far too many autistic people in similar holding patterns. It’s wrong that our autistic traits are coded as being “too much” and we are made to feel like burdens; that no one tells us what to watch out for until it’s too late. Society seems to single out autistic traits as excuses for abusive behaviour. It is vital that this ends.

To fellow autistic people, I wanted to say you aren’t alone and you deserve to be treated kindly, and with respect. Abuse is not a normal part of life and there isn’t an excuse for it. No matter what people tell you, it’s not your fault. You never have been a burden, nor could you ever be.

If you have been affected by this post, or would like help to find accessible services in your area, please visit our support page by clicking here.

Samaritans – If you need to talk to someone immediately, please visit www.samaritans.org or call 08457 90 90 90 (24 hours, 7 days a week)

Life After Sexual Assault #ITSNOTOK

Blue speech bubble logo. Red and white text reads: SEXUAL ABUSE AND SEXUAL VIOLENCE AWARENESS WEEK 2017. 6TH - 12TH FEBRUARY

For Sexual Abuse and Sexual Violence Awareness Week we are amplifying disabled survivors voices on our blog. This post is by one of our founders, Ashley, who is a disabled survivor.

Content note: this post is about sexual assault and rape. It also mentions a suicide attempt.

Disabled Survivors Unite means everything to me.

I’m sitting here, writing this blog after spending nearly six hours down the street from where I was raped. It’s past midnight, but sleep won’t come. This isn’t the first time I’ve been back. In fact, it’s been a couple years now since the attack even took place. Yet, I still found myself scanning every face, wondering if I’d run into my attacker. I scoped out the nearest exits. I made contingency plans. This is the reality of my life after sexual assault.

Nearly two years ago, I wrote “People don’t want to hear your story until it has a happy ending. But I’m stubborn.” I stand by that. Some stories need to be told with their awfulness intact, especially for things like Sexual Abuse and Sexual Violence Awareness Week. The horrific must have a place in this discourse. I’m going to share my story with you today, because I don’t want others to feel ashamed or alone.

My name is Ashley Stephen and I was raped.

I was drugged and raped in London when I was 21. Due to my autism, I often go non-verbal under stress, yet I was very clear that I did not want to have sex with this man, this stranger. What I wanted was of no importance to him.

I fell into a deep hole that no one seemed prepared to help me out of it. The knowledge wasn’t there for someone like me, a rape victim with autism and other disabilities. And so the months went by without proper support. With each passing moment, I retreated further into my head. No one knew what to do.

Upon hearing that my case would not go forward, I tried to kill myself. I remember waking up in the hospital bed with an apologetic doctor explaining that England didn’t have any support set up for “people like me.”

I struggle every day with the knowledge that my situation is not an uncommon one. Through the people who have opened up to us, I know just how common this is. My work with Disabled Survivors Unite has made it extremely clear to me that sexual violence is an epidemic that is rarely discussed with us in mind.

People like us often go unheard. Disabled people are desexualised to such a degree in the eyes of the public that the possibility of us being victims doesn’t even occur to people. When I was raped, my disabilities were ignored by those in charge of helping me. It’s vital that this changes.

As I said at the start, Disabled Survivors Unite means everything to me. All four co-founders pour our hearts into this, for you. I want each and every survivor out there to know that I love and believe you and will fight for you with everything I have. I want it to be known that it’s okay not to be a “good survivor,” whatever the hell that even means. You’re allowed to be a broken mess, you’re allowed to identify as a victim. I sometimes still identify as a victim, too.

Living after sexual violence can be a constant, messy, and completely isolating challenge. You can pour everything you have into recovery and feel as though you haven’t moved an inch. One of the biggest things I learned was to allow myself the space to fall apart. In picking up the pieces, I’ve begun to stitch myself into something resembling a patchwork quilt, completely of my own design. Therein, I started to find my strength. More than anything in the world, I want to help you get there, too.

Please reach out to us. Please know people are there who truly care. More than anything, please know that you are believed and that you are loved.

For information about how we can help you to find accessible support, please click here.

Ashley runs the (re)storytellers, a project which gives disabled survivors the opportunity to write and anonymously share their stories. You can learn more about it here.

#ITSNOTOK Disability Themed Twitter Q&A 

Blue speech bubble logo. Red and white text reads: SEXUAL ABUSE AND SEXUAL VIOLENCE AWARENESS WEEK 2017. 6TH - 12TH FEBRUARY

This Friday, the 10th of February, from 1-2pm GMT, Disabled Survivors Unite will be hosting a Twitter Q&A with Respond centred around disability for Sexual Abuse and Sexual Violence Awareness Week.

We welcome everyone to take part in this discussion! We are especially keen to hear from disabled survivors and disabled people.

However, we have purposefully phrased questions in such a way that means you do not have to disclose whether you are either disabled or a survivor when answering.

Disabled Survivors Unite are a user-led organisation (all founders are disabled) creating change for disabled survivors of abuse and sexual violence. You can find out more about our work here.

Respond is a service which provides support to children and adults with learning disabilities who have experienced abuse or trauma. You can find out more about their work here.

How our Twitter Q&A will work

Be sure to follow @DSUtweets and @RESPOND_UK on Twitter. All questions will be posted by the @DSUtweets Twitter account.

We will be using the #itsnotok hashtag for this discussion. However, please note that this hashtag is being used widely for Sexual Abuse and Sexual Violence Awareness Week, so other discussions might be taking place on it.

We will be tweeting ten questions over the hour, but please feel free to take your time answering these. All questions are available in advance below.

Format of Q&A

If you respond to a question such as Q1, your tweet should follow the format: “A1 [your message] #itsnotok”

In this case, Q1 stands for Question #1 and A1 stands for Answer #1.

The hashtag will allow us to see your responses, and the number means we know which question you are answering. However, if you find it easier, feel free to quote retweet with your answer.

If you might be overwhelmed by the volume of tweets and only want to see the chat’s questions so you can respond to them, check @DSUtweets account. Each question will tweeted about 6 minutes apart.

For an explanation of how to participate in a Twitter chat, please check out this useful example by Ruti Regan here.

Check out this captioned ASL explanation of how to participate in a chat by @behearddc by clicking here.

If you need any support during this discussion, or afterwards, please visit our website page on Getting Support here.

If you think posts may be triggering for you, please ‘mute’ the #itsnotok hashtag. This way you should not see the questions and answers. You can learn how to do this by clicking here.

Questions

Feel free to prepare your answers in advance, but please only post these once we have asked the questions on Friday.

Q1 Please introduce yourself however you feel comfortable! If you’re a service, please describe your work & reason for joining. #itsnotok

Q2 What services exist for disabled survivors? How can we create more specialised services? #itsnotok

Q3 How can existing support services become more accessible to disabled people? What changes would you like to see? #itsnotok

Q4 How do disabled people experience sexual abuse and sexual violence in different ways to non-disabled people? #itsnotok

Q5 What can schools do to educate disabled children about safe, appropriate sex and how to identify abuse? #itsnotok

Q6 How can therapy help disabled survivors who have experienced sexual abuse and violence? How could it be made more accessible? #itsnotok

Q7 What can the police do to better support disabled survivors? What changes are needed? #itsnotok

Q8 Does the criminal justice system put disabled survivors at a disadvantage? If so, how can we change this? #itsnotok

Q9 How important is it that disabled user led groups/survivors are involved in research surrounding abuse and sexual violence? #itsnotok

Q10 If you could say one thing to a disabled survivor, what would it be? We will collect these into a blog post for survivors to read. #itsnotok

We hope you can participate in our first #itsnotok disability themed Twitter discussion!

If you miss it, don’t worry! You’re free to answer the questions at any point!

We have tried to make this Q&A accessible a possible. However, can you think of anything that could make it more accessible? We welcome suggestions, please email these to us: info@disabledsurvivorsunite.org.uk

We want to say a special thank you to Alice Wong, founder of the Disability Visibility Project, for letting us use her wonderful #CripTheVote twitter discussion template. Be sure to follow Alice at @SFdirewolf and the Disability Visibility Project at @DisVisibility.

Disabled Survivors Unite is Headed to the European Parliament

Disabled Survivors Unite is thrilled to announce we are speaking on the panel “Domestic Violence Against People with Disabilities” at the European Parliament. 

All four co-founders will be giving testimonies from disabled survivors, alongside TABÚ from Iceland and We Rise Again from Sweden. Our friend Eleanor Lisney from Sisters of Frida will also be speaking about structural barriers faced by victims of domestic violence. 

This hearing, which is hosted by MEP Soraya Post, hopes to raise awareness of domestic abuse against disabled people and put the issue on the political agenda.

This event will be taking place on the 31st of January in Brussels. 

Ashley attends Campaign Bootcamp

Ashley smiling wearing a red shirt with ‘campaign bootcamp’ on the front

This week I attended Campaign Bootcamp, an intensive residential training course for people to develop their campaigning skills. I was lucky enough to receive a scholarship from Campaign Bootcamp, without which I would not have been able to attend. Throughout the week we were trained by experts in strategy, social media, publicity, outreach, technology, and fundraising. We also put what we learnt into practice through interactive and immersive exercises.

The skills I learnt will undoubtedly be put to good use with the work Disabled Survivors Unite are doing. The intensity of the training has also prepared me for the realities of running campaigns and I feel much more confident as a result. In addition, it was a great opportunity to develop team skills and network with fellow Bootcampers, some of whom have expressed interest in working with DSU in the future.

The team behind Campaign Bootcamp went out of their way to make sure everything was accessible. I greatly look forward to working with them over the next year through their mentorship programme to continue improving on everything I’ve learned. All these skills will surely help Disabled Survivors Unite thrive as an organisation.

Group of Campaign Bootcamp attendees standing together outside, most of whom are wearing red Campaign Bootcamp shirts