I was asked to speak at an autism event last year. The organisation hosting it told me they have one presentation on autism each year and it was a great privilege to be asked to speak there. I prepared my talk and travelled to the town the talk was in. The neurotypical organiser asked me something I have never been asked before and hope never to be again. They said ‘so what are you going to wear tomorrow Jeanette?’ I was very tempted to say I would be naked due to my respect and love for nature but restrained myself. At the talk the same person asked my how to ‘manage militant politically correct autism activists?’ I suggested that listening to them was probably the best idea given the way things are now and that those who attack ‘political correctness’ are more of a worry as they are essentially fighting for the right to be disrespectful. I did not hear from the organisation who asked me to speak again.

This illustrates something I have noticed over my advocacy career: the idea of the ‘tame’ autistic advocate cast against the role of ‘militant activist.’  While I deliver my message in quite a gentle way, I never want to be ‘tame’ and part of some divisive attempt to separate autistic people and alienate us from one another.

If an organisation wants an autistic speaker they should be prepared to be challenged and learn from that person and their peers. My concern when I am seen as the ‘tame autistic’ is that the organisation maybe wants to just tick the ‘we got an autistic person at our event’ box. If that is the case it makes me concerned that the organisation is not looking to learn anything at all so there is probably not much point me being there. 

The context to this is simple as far as I see it. Autistics are a stigmatised, oppressed, bullied and unappreciated minority. We have been this for ages but we didn’t have much of a voice until recently. Many of us experience post-traumatic stress from a variety of traumatic events and triggers, including for some from ABA – supposedly a ‘therapy’ for autism!  We spent our lives being discriminated against, hated and disrespected but now we have a community and our voice – lots of voices actually! We want our message to make a difference. We want a world where the kind of misery we have experienced doesn’t continue to happen to us or our children and the next generation.

People booking autistics to write and speak need to know this. Yes, I am a gentle person and I try to include everyone when I speak and for it to be meaningful for allistics and autistics alike, but those oppressions  and aggressions in the previous paragraph? Yes, I experienced and continue to experience those too.  I am not a ‘tame autistic’ and never intend to be one. Those that want such a speaker or writer have missed the point as far as I am concerned. Change is clearly and definitively not about ticking boxes. It is about listening to our perspectives and learning from us, whatever we may be wearing! The organisations who complain at speakers for being to ‘bolshie’ are the ones who need our thoughts and words and messages the most. 

Mostly I speak for the audience rather than for  the organisation booking me so I have endured some unhelpful things from organisations but I am very tempted to put together a checklist of ‘why are you booking an autistic speaker’ and also ‘what will you do to ensure they are included, respected and supported along with autistic attendees at the event?’ If an organisation is seeking autistic input it really should be genuine. 

Imagine booking an engineering conference but asking everyone involved in building bridges to speak and not engineers. Sure, you will get some idea of what a bridge is and how to use it but not the key message.  We are experts in our lives. This doesn’t mean every autistics speaker can present on any topic related to autism because we cant;. What it does mean is that we are likely to share a number of attributes and experiences with other autistics which allistics / neurotypicals do not. We will notice things others are completely unaware of.

The really good thing in all of this is that being respectful and inclusive is helpful for everyone: An organisation supporting autistic kids is almost certainly going to see a difference in their work when putting into place the ideas from actually autistic people. If you are working with autistics then it is essential to gain the views of autistics who have used similar services to the one you are offering. It just seems so obvious to me. And if the people you seek advice from challenge or disagree with you? Well take the opportunity to learn from that. This is good, useful feedback which will improve the service you are offering.

There is a ways to go with this but we do seem in a better position to support organisations to move beyond wanting a ‘tame autistic’ to tick the box and instead valuing the vital contribution that autistic people have.

“When I was a child, my dad had a market garden. Times were tough and he worked long days to keep us all fed and clothed. He even had lights in the greenhouses so that he could work after dark. Some days I would only see him at breakfast and dinner. The main lesson I took from this was that you need to work hard to survive.

I left home at 17. In order to fund my independent living, I got a job. This was in 1992, in the middle of a major recession. I went to a lot of job interviews and ended up getting a job in a fast food restaurant. That ingrained work ethic from my childhood meant that I was highly proficient at a job I actually hated. I was promoted to junior manager….”

View the full post at: clickability.com.au/blog/my-wonderful-world-of-work/ 

 

I have known within myself for some time that the two options for gender that I spent so long thinking were the only ones didn’t quite work when it  came to how I saw myself. I was a called a girl and saw all that entailed in our society. For a long time I thought that the constructs of gender were false and imposed upon us for whatever reason. I met very ‘girly’ women and thought they must have been brainwashed or something. I have always been noticed and singled out by school bullies – yes, even an adult – for a number of reasons. When I was a kid the gender stuff just got added to all the other stuff but when school children have felt the need to publicly criticise my adult self as I walk past, the ‘insult’ is always the same ‘Are you a boy or a girl?’ I always wanted to say ‘I’m not either, I am me’ but instead looked at the ground and prayed they would go away. I occupy the space of a different gender – something I often thought of as a third gender which doesn’t fit neatly into the male or female expression – for my whole life. My choices in my dress sense and hair and other external expressions of identity change every several years. I spent my teens and early twenties with shaved short hair and wearing check flannelette shirts and work-boots. Bus drivers used to call me ‘mate’. In the last six or so years my outward expression has been about sparkly and shiny and colourful. This is a conscious part of my work as an autistic advocate but it is an expression I imagine would perhaps be considered more ‘feminine’ but I don’t really know. When I wear what I like to call a ‘frock’ it feels like I am playing stress ups rather than being genuinely ‘me.’ My comfort – ‘being me’ – clothes are pants and t-shirts and runners with big jewellery and a coloured wig or hat. I am not at all questioning or unsure of my identity. I know who I am. My gender is ‘Jeanette’.

Despite knowing who I am, I haven’t really formalised or articulated my thoughts about my own gender identity until recently. I have some great friends who are trans, gender fluid and part of the gender diverse community. I have been discussing these thoughts about who I am in terms of gender identity for some times and have received some great support and encouragement. The other day I announced my wish to be referred to as they / them rather than she / her. I put it on Facebook, just like that. It has been the start of a very fertile time of thinking and consideration and reflecting on who I am.

I posted this the other night: 

I recently publicly affirmed and declared that I identify as being of non-binary gender and that I prefer being referred to as ‘them/they’ to being to as ‘she/her.’ It has been incredibly liberating and opening new possibilities to my understanding of myself and others. It makes me feel sort of young, like I am discovering more about myself than I knew was there. I am wondering why it took me so long to get to this point of identifying and understanding. There is a lot of contented happy wandering through life tempered by occasional worry and uncertainty.

Oddly enough the uncertainty is around something I would jump right on if heard someone else say it. I keep wondering if it is a ‘phase!’ – like the parent of a teen who brings her girlfriend home in the 1980s might have said!  I find that really absurd. I am being discriminatory against myself! I counter that one by reminding myself of how liberated I feel having come out and the fact that I am 43 years old, so probably ‘phases’ aren’t part of my age group’s experience! (And the ‘phase’ idea around edgier and sexuality is pretty silly and unhelpful, not to mention kind of bigoted anyway.) 

Because I have known that I am non-binary for a while I thought coming out would be almost like a formality. I didn’t anticipate what it would mean. My identity has just blossomed into something I didn’t know was there. I feel like a plant which has been growing slowly in the shade and all of a sudden it gets put in the sunlight – it was getting by before but now it is just blooming and reaching its potential. I know that there are some other more specific descriptors of gender identity which I am not sure whether I belong to yet so will need to find out more about them. While I am thought of as an expert in autism and a bit less of an expert in mental health things, I feel very short on expertise around gender beyond my own experience and those that friends have described to me and written about. This kind of thing is very exciting. There is more to discover about me. 

Embracing my me-ness is like unknown territory in many ways. I think it also brings me closer to a lot of friends which makes me happy. Because I have a profile in the autism and autistic community it seems to be a lovely thing because I am hoping it will be relatable to other gender diverse autistic people. There are actually a huge number of us, both anecdotally and in research evidence. It also opens the conversation around gender diversity to people who might not otherwise think a lot about it.

I keep asking questions which I can’t easily answer: Should I keep running my women’s group? (My thinking is that as long as none of the members of the group have an issue there shouldn’t be a problem. I am definitely all for feminist principles and empowering women and have facilitated the group perfectly well since 2011!). Should I change my name? I am wondering about this. I would quite like to but I think I should let that one sit a bit longer and see how I want to approach it. Will I have to justify myself or defend myself for deal with more discrimination as an ‘out’ non-binary person? Maybe, probably. I don’t know but I do know I will be using my identity to support others who may face discrimination where I can. 

I am liking my unfolding identity. It is a huge adventure and I’m not quite sure where it will go but I am glad I took the step to tell everyone. It is like the first chapter of the book, just after the introduction…

When I was nineteen I worked at a fast food restaurant as a casual employee. This was my only income. My employer would roster me on for one or two shifts a fortnight and then, knowing how horrified I would be and stressed that I was about to lose my job, they would call me in every single day to do a shift. I remember my anxiety every time the  phone rang at three pm as it was always my boss, but it never occurred to me to decline the shift or even to just let the phone ring out. This was 1993 – long before ordinary people would have mobile phones! I genuinely couldn’t work out that I was being played so would be delighted to get all these shifts, even being happy to do two all night shifts on the weekends. Looking back I imagine my managers thought I was some kind of fool for not realising that I was being played. In fact I wasn’t a fool but I was a person who used different ways of communicating and interpreting communication than my employer did. 

I am writing this post because someone asked me to. I don’t generally do that. This is not so much because I am some arrogant princess thinking only I can come up with good blog post ideas but simply because a lot of the topics people want me to write on are largely beyond my knowledge so I would not write a very ‘real’ post and it might be more like a literature review or case study! However, the topic of autistic people being taken advantage of, manipulated and duped is sadly something all too common in my experience.

I think every autistic person has probably experienced this or still experiences it. There is an actual concrete reason that we tend to be taken advantage of and it starts with the difference in communication between autistic people and neurotypical people. Autistic communication is generally on one level. We are honest, up front and do not often do things like manipulation and deceit. We generally do not lie although many autistic people are capable of lying if they feel the need but usually it doesn’t come naturally.

Neurotypical  people (or ‘allistics’ if you prefer) operate differently in how they communicate. Their communication tends to happen on more than one level. Mostly this doesn’t result in them being predatory or unethical and just results in some confusion when they meet an autistic person who operates differently. However there are some people who prey on others and when they come across an autistic person who sees things on one level and doesn’t realise others don’t and they become aware of the difference then predation can occur. It can be seen as the difference between visible light and infrared light. If you can only see visible light then it is hard to imagine what infrared looks like, even if you are aware it exists. I am forty-three and have been taken advantage of so many times I have lost count. I am better at working out that people are capable of doing this but I still struggle to see it happening until after it occurs. One thing which can happen – and which is certainly true for me – is that I have become hyper-vigilant about these things and often refuse to trust anyone I don’t know well, even people who are not trying to take advantage of me.

Some circumstances this kind of exploitation commonly occurs in include:

• People cold calling or approaching you about products for sale or in some cases charities seeking donations. Autistic people not only tend to struggle with realising they are being taken advantage of financially, they may also not feel able to practice assertiveness. I know one older autistic woman who would talk to scammers who called her on the phone thinking they were genuine software company staff. While she probably did an unintentional good service by taking up their time and meaning they weren’t calling others, it does seem a little like making a cup of tea for a burglar you surprise going through your jewellery box! 
• Many autistic people are thoughtful and respectful and polite and don’t want to be disrespectful which can exacerbate this issue. Others find practicing assertiveness almost impossible.
• In some intimate relationships, autistic people can be manipulated and taken advantage of by their partner. This often takes the form of emotional exploitation and being controlled but can also involve  abuse and violence.
• People involved in criminal behaviour can convince autistic people to carry out criminal activities in return for approval and ‘friendship’. If they are caught, an honest autistic person can take all the responsibility not realising they have been set up.
• Schoolyard and other bullies often use this promise of approval and friendship to convince autistic people to humiliate themselves publicly or online. 

The more I know about all of this the more I find myself viewing everyone through a lens of cynicism. This is not a good place to be in either. We need to be aware of the potential threats and ways to avoid being victimised but also to remember that it is a fraction of neurotypical people who behave this way. 

Some strategies which can help include:

• Compare notes with autistic friends and peers. We can learn from each other about situations which exploitation can occur and support each other to stand up to them and avoid getting involved 
• Remind yourself that you do not HAVE to do things because others tell you to. If something feels wrong it probably is. 
• Do some training or practice around assertiveness. I used to think it was impossible to learn assertiveness but I have learned to do it a lot better now. It can take a while but it is  a great skill in this – and other – areas.
• Everything you do to support your autistic identity, build your self-worth and self-esteem is going to go towards equipping you with the skills and confidence to avoid being taken advantage of
• Reflect on where exploitation has happened to you or people you know. Think about what would have helped in the past situation. Keep a record of this and if a similar situation rises use the strategies you have identified
• And if it does happen, work through the issues and feelings but don’t ‘beat yourself up.’ You were not the person in he wrong and it was not your fault. As with all setbacks, try to learn what you can from it, get what support you need and move forward, 

My final point is to remember that this behaviour is in  no way the fault of the autistic victim. These issues arise as the result of a person or group of people intentionally taking advantage of a communication difference for their own gain. 

This is a post about services. Could you imagine how you might react if you called a plumber and they came over and were so inept that they made the issue you needed fixing worse? Or if they turned up and smashed up your the toilet? And could you imagine if they denied that anything wrong had happened even if it was obvious to everyone that it had? You would rightfully be pretty pissed off I imagine. You accessed  a service hoping it would help address something serious and instead it made matters much worse. That is very poor service delivery. Yet when many people – and many autistic people particularly – access mental health clinical services the metaphorical smashed toilet is all too often what they experience.

I will preface this piece by saying that I know there are some great mental health workers and my concerns are more directed at the mental health system and attitudes than individual staff members.

In many of the times I have sought help for my mental health issues, a number of factors have combined to effectively smash my (metaphorical) toilet. Autistic people trying to access mental health services share similar stories with me quite often, as do their parents and others who love and care for them. Crisis phone lines are a frequent source of misery and angst. For someone in crisis it is hard enough to bring yourself to make the call. It is anxiety provoking, especially for people who dislike or have high anxiety around using the telephone. In my experience the common horror stories people report after using crisis support services centre around them being treated like they are a child or that they are just wasting the clinicians’ time. I’m sure this isn’t intentional on their part but being on the receiving end makes many people reluctant to use these services even when they are actually in danger. Psychiatric wards are another place where invalidation happens on a regular basis. Autistic people are frequently misdiagnosed and as diagnosis trends to determine treatment for mental health issues, this can result in inappropriate and ineffective treatments and can even be dangerous. Stereotypes around autism are frequent. I remember a psychiatrist in hospital once telling me I was ‘too cool to be autistic’. While this was probably a throwaway line it horrified me. I had written a book on autism and gave talks at conferences and at schools. Surely my T-shirt and Converse sneakers wouldn’t preclude me from autism advocacy?

Most of the issues I have experienced in psychiatric services are focussed on a  poor knowledge of autism by mental health clinicians. Autistic communication can be ignored or be incorrectly seen as a symptom of a mental illness. Autistic people frequently get seen as manipulative when accessing mental health services. This is preposterous given that autistics tend to operate on one level and many are incapable of deliberate manipulation! Being labelled as manipulative in clinical psychiatric settings is not a good thing.

Autistic people can be utterly baffled by what is going on in clinical settings. The experience can be invalidating and traumatic for a number of reasons including being verbally or physically attacked and bullied in clinical settings – and not always by fellow ‘consumers’ (and when someone comes up with a less offensive term which encompasses ‘consumer’ without the ickiness please tell me. I’ve been trying to find one for years!!). People who have hyper empathy can find hospital settings overwhelming and horrific as not only do they feel terrible anyway but they are also surrounded by other people feeling awful and feeding into their mood.  If autistic people have meltdowns in clinical settings and staff do not understand what is going on this can result in a lot of misery and even legal sanctions. There can be a lot of inconsistency in mental health care, particular in hospital settings. This can add hugely to anxiety. Autistic people may respond differently to expected with medications. Being in a hospital setting for anyone usually seems to result in invalidation and condescension. But for autistic people this can be a huge issue. The frustration at trying to tell a nurse or doctor that something is upsetting or stressful or that they have misunderstood a vital part of your description of what is a problem for you can be off the scale.

Going into a mental health clinical setting is often highly disempowering. I have always felt like I was thought of as difficult in hospital. But I think  a lot of the issues outlined here could be more effectively addressed if clinicians in crisis teams and psychiatric wards knew a lot more about autism. If there was better understanding of autistic ways of communicating, more listening to people’s experiences and what is difficult and what we need to be done differently. Psychiatry is unfortunately a profession which has a lot of hierarchy inherent within it. I think everyone would benefit if some of that hierarchy was revisited and a more collegiate, listening approach taken where people accessing services were respected and listened to.

I think that a lot of the metaphorical toilet-smashing comes from ignorance and a lack of understanding the needs of autistic people accessing mental health services. Last year I gave a talk to a room full of psychiatrists. They absolutely loved it – which was good. The issue I saw was when all of them that spoke to me said ‘I love this emerging work you are doing Jeanette’, to which I replied ‘I have been doing this since 2005.’ We need more understanding of autistic experience in mental health services – a LOT more of it. Simple as that. If we don’t then the experiences that myself and so many others have when trying to access help will be as useful as that smashed toilet.