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: Embracing Neurodiversity Helped Me Heal

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

This post has been submitted by Skye.

Content notice: Abuse

I grew up being an undiagnosed ADHD autistic. Many people use this fact to conclude that I must be “not severely autistic”, which to me is a really strange conclusion. As a child, I was often overwhelmed and helpless. I forgot most basic things, I was disorganized, I was lost in social situations, and sensory overload as well as all kinds of emotional distress put me into meltdowns quickly. I was unable to handle my meltdowns in any way.

However, my parent did not see this as a reason to help me, or to reach out for external help or a diagnosis. (Considering how abusive the psychiatric system is, I don’t think this would have improved my life much, but still.) Instead, they used it as a welcome excuse to abuse me.

Throughout my life, many people insisted that I was “normal”, or “extremely smart” or “talented”, refusing to see how disabled I was. At the same time, the exact same people used my disabilities either as an excuse to abuse me, or as a way to manipulate and exploit me in various ways.

They would put me into meltdowns on purpose, but if I had a meltdown, this was interpreted as a malicious act.

They would give me tasks that I could not carry out and then punish me for failing.

They would shame me for being disorganized and demand me to change, which is not in the realm of possibilities.

I was always easy to lie to, easy to convince and easy to manipulate. I’m a gullible person. I’ve had an abusive relationships in which my partner used those traits to make me stay with him for years.

But, I’ve always been a pigheaded fighter too. It took me a while to learn enough about the world before I could escape the abuse, but eventually I did.

Since then, I have recognized that I am neurodivergent and have learned to embrace my neurotype. For me, this was the most important step towards healing and living a really fulfilling life.

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)

Autism and Consent: It’s Time for a Rethink

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

Georgia Harper is a Youth Patron for Ambitious about Autism, and has previously written for the Ambitious about Autism myVoice website. Georgia is currently studying for an LLM in human rights law at Queen Mary, University of London. In this guest blog she writes about autism and consent.

Content note: discussion of sexual assault and abuse.

It’s World Autism Awareness Week, so I’m going to start by making you aware that some autistic people have relationships, and some autistic people have sex, and some autistic people are taken advantage of in those contexts amongst a variety of others. Given that autistic people are people, this really shouldn’t be so surprising, but these simple facts are often overlooked in the way we talk about autism and consent – or rather, in the way we DON’T talk about it. In fact, some people still use outdated stereotypes around autism to attempt to excuse abuse and harassment, along the lines of “he works in computing, so he might be on the spectrum, so he can’t really know what he’s doing”.

Of course, autistic people can be perpetrators just like everybody else (and the assumption that none of us understand whether there is or isn’t a “yes” is frankly offensive…), but these attempts to pit survivors and autistic people against each other ignores the significant number of people in both categories.

There are various reasons why autistic people are particularly vulnerable to various forms of abuse; for example, many cannot pick up the subtle signs of a person’s true motives, instead taking what they say at face value. Having said that, I think it’s really important to think about how much of this vulnerability is taught.

Our sensory experiences are often framed as “objectively” wrong and something for us to learn to hide or “get over” – so if you happen to be hypersensitive to touch, you might assume that any discomfort around touch is 1.) because of your autism and 2.) your own problem to deal with. I’ll let you do the maths.

Growing up autistic also tends to be a crash course in The Social Rules, often launched at us with no explanation beyond “because the adult says so” or “because otherwise people won’t like you”. This can be dangerous not only because those with more malicious intent may use very similar reasoning, but also because this rush to drill in social skills invariably (and conveniently) leaves out one of the most important social skills of all: learning to say “no”. And as for relationships – well, if it’s apparently so rare, we might be left feeling like we should be grateful if we have one at all, however unhealthy it really is.

These issues are further compounded by wider stereotypes around abuse. For example, in the UK, sexual assault is legally defined as any sexual touching without consent or reasonable belief in consent, but as a society we often have very narrow ideas about what sexual assault can look like – these ideas often involve a random attacker in an alleyway, even though most attackers are known and often trusted by the people they target.

Myths like these harm all survivors, but may present a particular barrier to autistic people coming forward as they are more likely to take the “assault is always a stranger in an alleyway” suggestions literally.

Those who do come forward then face the usual barrage of people trying to discredit them. For instance, “you don’t SEEM upset” might be said to someone who doesn’t express emotions in neurotypical ways – also ignoring the very wide range of responses that even neurotypical people show in the face of trauma. “You didn’t say no” is another common one – forgetting that your body is your own by default, and interference with that needs your express permission. This is particularly harmful to those autistic people who freeze or become non-verbal under stress – it shouldn’t have to be said, but shutdown is not consent.

These are just some of the reasons why autistic people may be both more vulnerable to abuse and less likely to receive the support they need in the event of abuse. Ignoring the problem won’t make it go away – but perhaps changing attitudes towards autism and towards abuse will.

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 Hate Crime: When ‘Mates’ Only Hate

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

This is a guest blog by Jack Welch, autism advocate and active campaigner on anti-bullying, besides many other causes. Jack is a Youth Patron for Ambitious about Autism and a supporter of numerous charities. Here he writes about his experiences of ‘mate crime’.

Over more recent years, there is an obligatory question I have to ask myself about people: is there an ulterior motive behind it? Even for the most good natured and well-intentioned individuals, I can’t help but wonder what might be the thoughts behind the words of someone’s comment. This is the lasting legacy of ‘mate crime’, as it’s described, and perhaps much worse for those who have experienced these acts.

While mate crime can take shape in many guises, whether it be pushed into a situation a person may not feel comfortable in or potential forms of sexual exploitation, let’s be clear about one thing: mate crime is another extension of hate crime. For people on the autistic spectrum and/or who have a learning disability, which would include me, we are typically at greater risk of encountering this kind of abuse.

In my case, I would be approached by other pupils in my first year of secondary school to give small amounts of change, with the assurance that it would be returned to me. Generally those who I regarded as ‘friends’ would benefit from this goodwill that I would like to believe would be reciprocated in turn, or ‘give and take’ as many of us would define it. In seeing that money back again, I was for the most part mistaken. Stationery equipment, namely pens, would also have a similar fate. There were many other aspects which made me detest that school (a boys-only environment) before I would move to a mixed comprehensive in a new town a year after, but that example was a formative experience in changing my attitudes about people around me more completely.

Some might ask me why I was so gullible or trusting to believe that I would be so misguided to give without any certainty of a redress. For neurotypicals, it may be harder to believe, but I wanted to convince myself that they could be good friends and this was how friendship was supposed to be. As years have gone by, I have accepted that people are much more complicated (especially when there were any conversations about boyfriend/girlfriend issues among my friendship group) and that there would be those who are prepared to exploit any sign of kindness they see.

Would giving small change or pens be realistically taken to court? Probably not, but the personal impact is not one to underestimate. Understanding the fine nuances of what might be seen as a favour down to criminal exploitation is easier for some to determine than others, especially if a person is isolated and unfamiliar with social conventions. A report by the formerly named Wirral Autistic Society (now Autism Together) found that 54% of 12-16 year olds from their survey had money or other possessions stolen. We should be worried as a society that this will be the connotations of what ‘friendship’ might mean to many autistic people from a young age.

For me, it is evident that qualities like trust and honesty are not rewarded so lightly and there are many who simply do not deserve that privilege if they feel entitled. While having good friends around me is vital and being able to share my thoughts/feelings, trying to shed any doubt or scepticism is something that may not foreseeably happen again. Even among those I would describe as friends, asking a simple favour can be a difficult ordeal out of fear of what might be asked in return later. If there’s anything to learn about mate crime, or other kinds of hate, it is that emotional scars can last much longer than anything on the body.

For information on how to spot and stop ‘mate crime’, please click here. And to learn how to report it, please click here.

Supportline offers confidential emotional support to all people, including those who are experiencing bullying, ‘mate crime’, and hate crime. You can contact them by telephone, email, or post.

Autism and Abuse: I Can Forgive, but I Cannot Forget

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

The following is an anonymous submission. If you’re interested in submitting, please click here to learn more.

Content Note: This submission references abuse and violence.

I can forgive, but I cannot forget. I cannot forget the stinging blows. I cannot forget your raised voice. I cannot forget the way you screamed, Holding your face against mine. I cannot forget the little things, The ways you tried to change me for who I was. I cannot forget any of it, Though I can forgive, And I have. But most of all, I cannot forget you, You who come into my dreams every night, Only to not be there When I wake up. I miss you, I love you, I forgive you, But I cannot forget you.

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.

World Autism Awareness Week – Call for Submissions

Disabled Survivors Unite is taking part in The National Autistic Society’s World Autism Awareness Week 2017.

From 27 March – 2 April, we will be raising awareness of autistic people’s experiences of abuse and sexual violence by amplifying their voices on our blog.

We welcome all autistic survivors who have experienced any form of abuse to submit a blog post. Please note this includes people who have self-diagnosed.

This project is for people who have experienced any kind of abuse or sexual violence. This includes, but is not limited to; bullying, hate crime, institutional abuse, domestic abuse, abuse by family, unwanted touching, sexual assault, rape. If you identify as a survivor (or a victim), we welcome you to take part.

There is no right or wrong way to share your story or feelings, and we encourage you to do this in whichever way you would like.

Here are a few ideas;

  • Write a letter to someone
  • Share a piece of art you have created or a photograph you have took
  • Tell your story
  • Share information that you think people need to know about autism and abuse
  • Write a poem
  • Offer advice

If you would like our help to create a blog post, please get in touch and we’ll be more than happy to assist you!

You can send all submissions by email: a.stephen@disabledsurvivorsunite.org.uk

Or you can send written submissions anonymously by filling in the form at the end of this post. We will keep all blog posts anonymous unless you ask us not to. Please read how we ensure all survivors stay safe when sharing their story.

If you get in touch with us by email, you can still choose to remain anonymous and do not have to give us your name.

If you send us your blog by email, we can let you know what day and time it will be published.

We hope you will consider helping us in our campaign to have autistic survivors voices heard.

Write for our blog


 

Support Ratifying The Istanbul Convention

Purple and white logo. The female gender sign with a clenched fist in the centre. Text says "#changeherstory write to your MP to ratify the Istanbul Convention"

This Friday MPs have the opportunity to vote on the third reading of a Private Members Bill which supports the ratification of The Istanbul Convention.

To read about how this Convention will protect disabled women and girls against violence, please read our previous blog post.

100 MPs must vote on Friday to ensure that the Bill makes it to the next stage, but most will be in their local constituencies rather than Parliament.

By asking your MP to vote, you could make a difference. In December 135 MPs supported the Bill, many of who were encouraged to vote because they were asked by their constituents.

We have created a template letter which you can email to your MP, please click here to download it. You can also Tweet your MP and ask them to vote using the #ChangeHerstory hashtag.

To find your MPs email address, Twitter handle, and Facebook page, click here.

For more information about IC Change’s wonderful #ChangeHerstory campaign, please visit their website.

The Importance of Support #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 written by one of our founders, Alice, who is a disabled survivor.

Content note: this post is about the impact that lack of support has on disabled survivors.

“Often it isn’t the initiating trauma that creates seemingly insurmountable pain, but the lack of support after.” ― S. Kelley

This quote is one of my favourites because it reminds us just how important support is after experiencing abuse and sexual violence.

In my work at Disabled Survivors Unite I have heard a countless amount of testimonies from disabled survivors, and the theme that runs throughout them all is the devastating impact of being unsupported. It is also a theme that I have experienced throughout my life.

Many disabled people we hear from have not gotten the support they need, whether that be therapy or emergency accommodation, simply because it was not made accessible to them. In their time of need, they are turned away.

Others are forced to have inaccessible support which is harmful to their health and wellbeing. It is crucial that we recognise the detrimental effect this can have on a persons life.

Some disabled survivors speak out about what has happened to them, but their stories are ignored or dismissed because of their disability. Others are blamed for the abuse they have endured, or are told that their disability was the cause.

With government cuts affecting the vast majority of front line services, it can sometimes be hard to see hope for disabled survivors. Many services simply cannot afford to make adaptions to their buildings or redesign what they offer, they are already struggling to operate on their budgets.

But I do see hope, Disabled Survivors Unite are changing things. The services we consult with are keen to support disabled people, and we have shown them how they can be inclusive without the expense of having to renovate their building.

The message that we give to services is this – no matter what, welcome disabled survivors with open arms. Invite us to use your service, ask us what we need, make adjustments, provide alternatives, and help us to find somewhere that can support us if you cannot.

Being given the opportunity and ability to access support really is vital. It can help a victim become a survivor. And without it, we suffer.

If you would like to work with us to improve your service, please email: info@disabledsurvivorsunite.org.uk

If you are a disabled survivor who would like support, or help to find accessible support in your area, please click 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.