A couple of weeks ago autistic advocate Louis Brunel stood up at a conference and made a clear and powerful statement against the father of anti-vax, Andrew Wakefield, who used to be Dr Andrew Wakefield but was deregistered as a doctor after publishing a paper linking autism to vaccines using incorrect ‘evidence’ and then manufacturing a ‘movement’. Louis Brunel became my instant hero for doing this and it got me thinking about the issues with fear-mongering about autism.

Wakefield sparked off a whole load of pseudo scientific nonsense which fed existing negative views and is extremely damaging to autistic people and those who love and care for us. I want to unpack these views and their associated ‘movement’. I wish I didn’t have too but tragically this stuff still carries weight among many of the population.

The first myth I want to bust is that of the ‘autism epidemic’. I am definitely not the first person to do this. The idea of autism as an ‘epidemic’ revolves around lot of meaningless correlation of statistics. Correlation does not equal causation as any first year PhD candidate could tell you but this hasn’t stopped this myth taking hold. Apparently the MMR vaccine and a growth in autism diagnoses were related to each other. You could just as easily connect the decline in people using cassette tapes with increases in autism rates if both occurred at the same time but correlation and causation are entirely different things. Something happening at the same time doesn’t mean one causes the other. Sensible researchers and Autistic advocates and our allies have more reasonably seen the increase in autism diagnoses as being the result of greater awareness of autism by clinicians and the public leading to higher rates of diagnosis. The idea of an ‘epidemic’ is in itself highly problematic. Firstly autism isn’t a disease. You cannot ‘catch autism’. And the negativity inherent in talking about epidemics is all extremely problematic and extremely disrespectful to autistic people. This kind of fear-mongering hurts autistic people and does not help anyone. Mental illness diagnosis rates have increased dramatically in recent years as well but there is no ‘movement’ saying what a tragedy this is and finding some spurious reason for it. Lifetime prevalence of mental illness in Australia is one in two people. That is way more than the one in 70 or so who are autistic but nobody is going around scare-mongering about that!

In terms of evidence, anti-vax has been disproven hundreds of times by reputable studies. Despite this it still holds sway with some people. It has been consistently refuted by genuine scientific researchers in peer reviewed studies over the years. There is no real scientific evidence that vaccines have anything to do with autism but it persists. The very fact I am writing this is testament to the influence it has.

At its heart all of this problematic thinking has a view that autism is a tragedy and autistic people have no worthwhile views or thoughts. It goes to eugenics and has spawned a number of other ‘movements’ including the ‘bleach enemas cure autism’ horror. It goes against everything I believe and promote as an Autistic advocate. On my social media I am pretty open to different views but anti-vax viewpoints will result in me removing that person from my social media. I feel like the views are the enemy of autistic people and attack anything positive. They drag the whole discussion into an unhelpful place where advocates need to justify our existence and we have been doing that for a long time and it is not a good thing.

The other major issue with these views is that they influence people new to the world of autism. Parents of a newly diagnosed child might be exposed to this thinking and it will colour their view of their child. I often view these issues as being like a war between reason and misinformation. It is sadly not a struggle we can give up because if we do then we lose ground and more people are influenced by this awful, harmful, negative thinking. It is dangerous. I recently unfriended a Facebook follower who said they thought Wakefield might have answers to their questions. He doesn’t have any useful answers, just scaremongering and hatred. We need to stand up to this stuff where we can. I am thinking this article may well result in some trolling as the anti-vaxers are pretty vocal in silencing criticism but I am doing this because I feel I need to. Addressing this stuff in any way we can is going to be helpful. I am inspired by Louis Brunel’s speech. I don’t think I could be that brave to face Wakefield and challenge him but I can write this. When I said I was going to write this post one of my Facebook family, Ian W, said “Fear is not moving us forward… Hope is.” Which to me is a fitting summary of this post and of the work which needs doing in this area. 

Content warning: Bullying 

I was diagnosed as autistic in 1994 when I was 20 years old. I was not a person who found their Autistic tribe instantly or even quickly. I hated the diagnosis and could not associate it with me. Well, outwardly at least. Living as an undiagnosed autistic in a world where there was no appropriate diagnosis (Aspergers was only included in the DSM IV which was released in 1994 – the year I was diagnosed). This means i went through school feeling completely alone and isolated. In high school I was the constant target of every bully in the place. The bus ride to and from school was even worse with the only adult preoccupied with safely driving the bus and playing his country music cassettes. School for me was like the book Lord fo the Flies. It never occurred to me to not attend school so for six years I was bullied and invalidated every single day and often several times a day. 

One of the most frequent taunts was that I had an intellectual disability (well they didn’t use that language but you can imagine). While I was fascinated by autism and felt a connection with the one diagnosed autistic boy at my school, I never wanted to apply the autism diagnosis to myself. When I gained the diagnosis as a young adult I hated it for two reasons. The first was that I felt it was an excuse my parents could make for my poor behaviour at the time. But the main reason why I struggled with the ‘label’ was that I knew it was true and my understanding of it at the time was that it validated everything the bullies had said. I was filled with self-loathing and at the time, the autism diagnosis just confirmed my worst fears about myself. I set about being in deep denial for the next seven years. I would feel highly anxious to even hear the world ‘autism.’

The point at which I finally accepted my autism was when I was in first year at university. I had started to turn my life around and make some positive changes, one of which was enrolling in university. I discovered for the first time ever that people at university liked me for who I was, not because I was a member of a group. I had spent my teenage and early adult years desperately trying to fit in and belong. I thought that the best way to do this was to align myself with a group with set rules and just follow all the rules. I and been a fundamentalist Christian, a revolutionary socialist and a criminal, all with the intent to be accepted. It worked but nobody liked me for who I was, just because I agreed with their ‘rules’. At university I realised i wasn’t a member of any defined group but I had friends. Coupled with this I had an episode of mental illness which necessitated some soul-searching and reflection on my part. While doing this the thought of autism arose again and this time I thought ‘maybe this is me.’ 

You might think I suddenly embraced my autistic identity and wrote a book or something but I didn’t. My acceptance of my autism was gradual and incremental. For the first couple of years I would view it as something to be spoken about very cautiously, l as if telling people would result in them running me out of town! I would only tell people I really trusted. I wasn’t ashamed to be autistic, just scared of reprisals and bullying,

I went on for a few years not being particularly ‘out’ and then I met someone who changed everything – autistic author and advocate Polly Samuel / Donna Williams. I met Polly at a course and we instantly hit it off. Polly told me I should write my life story. She said it would be helpful for parents of autistic kids who get in trouble with the police and have addiction issues. She said this group was ostracised in parent circles. Almost immediately I made the connection that my book would be for my own parents so I wrote it. It was published and all of a sudden I had to be ‘out’ to everyone about my autism. I made the transition well and was soon speaking at events and giving media interviews about autism. It was quite challenging at first but I worked into it. I remember being terrified I would not be able to answer questions at presentations so set about learning more about autism beyond my own experience.

I still didn’t instantly ‘find my tribe’ though. That took a couple more years. It happened when I was at a conference for autistic women and girls. I was in a  room full of 100 autistic women other gender diverse autistic people and I knew I had come home. It was magic and I have never looked back. I found my Autistic Pride that day and it was a great realisation. 

These days I live and breathe advocacy and Autistic pride. My passionate interest is autism advocacy and I spend a lot of time talking to people about autism. Autistic pride is imbued my every interaction. Sometimes people contact me and are almost apologetic that they are having difficulty embracing their autism. I have no judgement and know that the road to pride is sometimes hard fought and won. Sometimes it is a long journey to Autistic pride but it is a very worthwhile journey to take. Every day of being proud of who I am has been a gift. After the start to life I had where I was invalidated and hated and treated like I had no right to exist, to be able to say ‘I am Autistic and Proud’ is a pretty amazing thing. We live in a world which often makes it hard to feel proud to be Autistic. Pride can make such a difference and mean the difference between masking and trying to hide who we are and accepting, loving and valuing ourselves. Your sense of pride helps others too. Get your pride on I say. It makes life better and Autistic people deserve to be proud of who we are. 

I am a full-time employee in a professional job. I have been for over 12 years. I have been promoted twice and have worked in a  number of responsible roles. This should not really be unusual – person gets job and keeps it for many years. Not really a headline but for someone who belongs to the various demographic groups that I do this is an amazing and unlikely thing. Like so many other autistic employees I am dedicated and professional and enjoy my job. Sadly a lot of autistic people do not get to share their skills and knowledge in a work context despite having a great deal to offer employers. This does not really relate to their level of skills but to a range of issues around employment which make it extremely hard for us to succeed at work.

One of the most difficult elements of work for autistic people is actually navigating the labyrinth of recruitment process – applications, CVs, interviews. These things can make it almost impossible for autistic people to find work.

We are so often disadvantaged in recruitment as autistic people but when we belong to additional diversity-type groups we face a compounded level of disadvantage. For example if an applicant is from a cultural background which is discriminated against they will face disadvantage for that which happens on top of the disadvantage they face as an autistic person. Add more ‘differences’ and that disadvantage is further compounded, making it almost impossible for many to secure a job. 

The CV might seem like an innocuous enough recruitment process but it can be extremely fraught for autistic applicants. They might have gaps in their work history. While recruiters shouldn’t be influenced in their decision by CV gaps it is often the case that they are. Many autistic people join the workforce at older ages than others meaning their resume may contain very little or no work history. It is so much harder to join the workforce at an older age and to be up against candidates who are more experienced, even if the autistic applicant is highly capable. Some autistic people struggle with that notion of selling themselves. While an allistic person with similar experience would spice up their resume and make their experience sound more impressive than it is, an autistic applicant might play down their strengths in their resume.

Another major challenge for autistic people is the job interview. Job interviews actually don’t tell an employer much about a candidate’s capability. I think interviews are good at two things – demonstrating if someone is good at job interviews and demonstrating if someone is a confident extrovert. In terms of actually demonstrating whether a person can do the job an interview is often not very helpful. Despite this, interviews are pretty much standard in recruitment processes. Autistic people may find the interview processes highly stressful. They may also have sensory issues with a panel of people talking to them at once and lighting and other issues in the room where the interview is held making it almost impossible for the applicant to even get their bearings let alone give a good performance. Autistic people might come across as ‘odd’ or different and may be discriminated against because of this.

It is often the case that recruiters have some degree of unconscious bias in their decisions. They may employ people who look and act like then. This may be a reason that there are companies with a low balance of genders and where almost everyone is white and from an English-speaking background. There probably wasn’t a directive at these firms to hire white men but interview panels may experience bias and hire those who look like them and have similar experiences. This issue can work against autistic job seekers and people from other groups too.

Many autism and employment programs now exist. They often use alternative measures to determine suitability for a position. Interviews are often replaced with activities over a period of time designed to show how proficient the applicants are at doing elements of the job itself.

I actually think that the kinds of recruitment methods which benefit autistic people benefit everyone. They are helpful to employers as they allow for more time and opportunity for candidates to demonstrate their actual suitability for the role. And they are beneficial to neurotypical candidates as well. It is not only those of us on the autism spectrum who get extremely stressed in interviews or have gaps in our CVs. This is one of those areas where autistic people are a bit like the canary in the mine – things that disadvantage us may also disadvantage others, even if others are not consciously aware fo this.

I am very fortunate / lucky / blessed to have my amazing job. I managed to navigate the recruitment processes which enabled me to do this but so many of my autistic peers have not been so fortunate. This is a wasted potential for society and a very unpleasant and frustrating situation for autistic people who are denied the opportunity to work just because selling themselves doesn’t come naturally or they struggle with job interviews. Everyone should have a similar opportunity to the ones I have.

 

A while back I had a realisation based on gatherings of autistic people at conferences and other events. There is usually a ‘quiet room’ at such events where people – most often autistic people – can go if things are getting to be too much. Often lunchtimes and breaks at events find the quiet room full of autistic people. I have been told all my life that autistic people don’t ‘do’ socialising and communication, that we have deficits and gaps in these areas. However, this has not been my experience when groups of autistic people get together. I noticed at conferences that autistic people were anything but lacking in social skills. We tend to socialise with each other easily. If a lone allistic person entered the quiet room it was them who lacked social skills, them who had deficits in communication.

This made me think firstly that autistic people aren’t doing anything wrong, we are just doing things differently. I moved from there to imagining that Autistic was a language and neurotypical was a language too. The issue here was that few people realised that Autistic was a valid language. If you imagine you are speaking French and someone else is speaking German. Then imagine that you are unaware there are any languages other than French. Your firmly believe that the way you speak is the only way to communicate. How would you react to someone speaking German? You would probably think they were really bad at communication despite the fact that they are fluent in a different language. This seems to me to be one of the main issues of being Autistic in the neurotypical world. It isn’t just that we speak a different language, it is the fact that our language is not considered valid and many people are unaware there even are languages other than neurotypical.

Autistic being viewed as a culture opens many doors to understanding  Autistic experience – and about being Autistic in the predominantly allistic world we live in. We are expats in a  strange land, migrants in a foreign country. What do migrants and expats seek out? Their compatriots. This is also true for Autistics – we talk of ‘finding our tribe’. Being around members of our ‘tribe’ enables us to speak freely and be ourselves, to communicate with the customs and language which come naturally to us. I have seen this countless times with Autistic kids meeting another Autistic for the first time and in my own personal experience too.

While I am on the topic of culture I want to also talk about power dynamics and imbalances. If Autistic is a culture them it is not generally a culture afforded the same respect as allistic culture. If anything we are an an oppressed minority. Our culture is rarely recognised. Autistic people even feel they have to mask and learn the customs of the majority and do not embrace their own culture. We are on the receiving end of prejudice and hate and sometimes we feel and seem invisible. One way to address this is through promoting and embodying Autistic pride.

Part of Autistic pride is about owning and promoting our Autistic culture and countering views that we are all the awful things that people say we are. We need pride. It counters the negative thinking, deficits focus and assumptions of incompetence which so frequently are levelled at us. Pride is inclusive of all neurodivergent people as well. I don’t want cliques or statements on online groups saying ‘only Asperger’s accepted’. I really struggle when people in our community do that separatist thing and say ‘don’t lump me in with those autistics’ and imply that they have more right to be heard than others due to some unhelpful functioning label.

I was at a conference once where I followed a speaker with very poor autism politics. Cures were mentioned. I was so horrified by what she said that I had to listen to music for much of her talk. When I got up to give my presentation I started with ‘I am a proud autistic person. I do not socialise wrongly, I socialise differently…’ and went on to represent for Autistic pride. It is important to counter such statements, both for anyone observing the problematic thinking but also for ourselves. When we state our pride it has an impact on others but possibly even more so on ourselves. I’m for more pride and more liberation. Autistic is a valid culture. I’m happy to teach interested allistics the language and some useful phrases. I just hope they are willing to learn as I have been taking lessons in speaking allistic for forty-four years and I think its about timely efforts were reciprocated! 

I am currently in Brisbane for a conference. I arrived this afternoon. I am one of the speakers. People often say to me ‘Don’t you get nervous speaking?’ I don’t get nervous speaking but other aspects of being a speaker can be  overwhelming,. I experienced a fair number of those today. 

I am used to going to airports so got on my flight with no difficulties but when I arrived things were challenging.

I went to the bathroom at the airport which I hate. I invariably go in the designated female one because it seems expected given my ‘demi-girl’-type expression / dress but I would much rather use the unisex one. Unfortunately the unisex doubles as the accessible one and I didn’t want to inconvenience others who need to use that facility. This despite me being outwardly quite a strong advocate for the rights of trans and gender diverse people. My advocacy doesn’t always apply to me I suppose! Feeling uncomfortable and guilty for letting myself down I got my bag. I then got a taxi to my hotel, which is a hotel I hadn’t been to before.

I didn’t know how long it would take to get here. The taxi I was given was a maxi taxi. It was hard to get into and my bag kept sliding all over the place. I had my laptop in my backpack and was worried it would get damaged. Then the driver pulled over and asked for the address which I had already given him. Apparently he didn’t listen. We sat on the side of the road for a good five minutes with them meter still going. I didn’t think it was right that I pay for his being lost but didn’t know the accepted protocol for asking him to turn it off. I spent the rest of the trip scared he wouldn’t find the hotel. Eventually we got to the street the hotel is in but he didn’t know which building. I was pretty frazzled by this time so asked him just to let me out. It was hot – I had come from a Canberra winter to balmy Brisbane and was still wearing a jacket. If I took the jacket off I would need to carry it and if I didn’t I would be hot. I also have a staph infection which caused me to go to the emergency GP last night and get antibiotics. I have read that staph bacteria like the heat. Was all the walking around trying to find my hotel going to make it worse? 

Where the driver dropped me off was near a building with boats and a high fence. It didn’t look like a  hotel but I found a cafe and went in. There were a bunch of older people having lunch and no cafe staff in evidence. Would it be OK to ask the patrons where to go? I had no other option so I did. They all talked at once and pointed at where I was meant to go. I have no sense of direction and the instructions were confusing. I thanked them and left knowing there there was no way a list of instructions like that was going to work with me as I forget all but the first one. Getting a bit desperate I walked across the vast carpark I found myself in. There was a person getting their bags out of the car. I asked them and they gave me a list of just two instructions which I could follow. I thanked them and set off.

I was in a strange place and was very anxious walking down the street. I heard dogs barking and hoped they weren’t loose. I was determined to find my hotel. It was either that for call the conference organiser which I didn’t want to do – they had their own things to do which I imagine didn’t involve rescuing me! Eventually I found the hotel after looking at all the nearby buildings with growing stress. The staff were really lovely and showed me how to get in after hours and other useful things. I got to my room very relieved and am now here writing this post.

The reason I wanted to write this post was to highlight that even highly accomplished autistic people can struggle with things that allistics may take for granted. Someone might look like that they have everything under control but in reality they are really struggling. Today when I was in the cab and looking for the hotel I was actually quite vulnerable. I suspect the cab driver took advantage of my confusion and made a few extra dollars. The input you get from other people is really important in these situations and supportive, clear and understanding is better than dismissive, rude and judgey any day. I am not saying autistic people need to be chaperoned or shielded from doing potentially stressful things, more that we can find everyday stuff chaotic and confusing and need support and understanding to get through it. I am now recovered from the stress and looking forward to the event tomorrow and catching up with friends and colleagues but it was not a nice experience and it is far from an isolated one.

I will preface this piece by saying some mental health workers are amazing and caring and make a big difference….and also that, for a variety of reasons, some are not.

I have a mental illness in addition to autism. I have had this illness since 1995 and it is nasty. It goes by the name of atypical schizophrenia and often seems to want to destroy everything good in my life. I have taken major medication or this for almost 25 years. Medication takes the edge off but life can still be very difficult. My illness means I often find myself in need of help – from friends and family and also from mental health professionals.

Now I know this because i have a mental illness and am autistic plus I know many others with similar experiences – mental health professionals are not always very clued up about autism. Sometimes accessing help from professionals can be a nightmare. Autistic people have a range of things which impact on the presentation of mental illnesses if they have one. Things like mental illness conditions looking different to the same condition in an allistic person, alexithymia (meaning  it is hard or impossible to access and articulate one’s emotions) and a difficulty in realising it is appropriate and a good idea to ask for help can make things difficult. These issues are often compounded the by attitudes of some mental health workers who do not understand autism. They may:

• Misinterpret behaviour as being manipulative – which it almost always isn’t
• Preconceived and incorrect notions of what autism means
• Ableist attitudes and a deficits view 
• Misinterpreting autistic people’s words
• Viewing everything through the lens of mental illness and not neurodiversity

One of the main issues which can happen is that a person gets a misdiagnosis. I even know of autistic people who  have sought assistance for mental illness and had their autism diagnosis invalidated and even cancelled. Thinking about how much a diagnosis can be a strong part of identity for autistic people, this horrifies me. Surely assistance is meant to be helpful and seeking help should make things better, not worse?

A mental heath worker can have such a massive impact on your sense of well-being and your mental health. A worker that isn’t proficient at their job can be damaging or even dangerous and a good one can make your recovery that much easier. What clinicians say and how they act can be very important to us when we are unwell. A positive comment can be amazing but a negative one can be highly upsetting. I remember a psychiatrist in hospital telling me that I was ‘too cool to be autistic.’ I’m sure it was meant as a throw-away line but it really upset me for many reasons, mostly that I am an advocate so my autism diagnosis is a pretty important part of who I am and what I do!

I get a bit wary of accessing help given some of my experiences in clinical settings and the invalidation which can and does occur. This is not good when I have a serious mental illness which is in need of medication and regular psychiatrist visits.

So what is the solution to this? I don’t want to tell people not to access help if they need it. 

I have a few strategies that I use to improve matters. These include:

• Of course the obvious one – advocacy and activism to change attitudes around autism and build understanding and respect.
• It would be great if training for mental health workers included a significant and detailed autism component and ongoing accreditation required that workers do further autism training.
• Writing down what I want to say when accessing support. This can help avoid me getting overwhelmed if the worker I’m speaking to is being unhelpful. It also gives a good structure to the conversation. 
• Asking a friend or family member to come with me to appointments to do a  bit of advocacy on my behalf.
• Be really informed about my illness. Know what meds I take, what dosage, know my triggers and what makes me feel better. I consciously build my sense of self-awareness, which is hard but generally very effective. Workers also tend to respect a person more who is self-aware.
• Use an advance agreement or similar. An advance agreement is something you can prepare, preferably with your doctor or mental health worker. It lists what you want done if you are unwell – who you want told, how workers should treat you, what your triggers are etc. This does require that health workers read it and take notice but I have found it to be a really useful strategy.
• Assertiveness is a wonderful quality and can help improve how mental health workers interact with you. Once again it can be tricky to acquire but there are courses you can take and I find it is a skill which improves with practice.
• Seeing your time in clinical settings like hospital or talking with support workers as an opportunity to build their autism knowledge as well as their understanding of you and your needs. 
• Being proud of who you are. This is extremely important. Self-esteem and self-love are great protective factors against invalidation. If you think and project the view that you deserve respect it can be more common for people to give it to you.

When you access help for anything it should be helpful. Sadly for autistic people – and others – accessing mental health assistance is not always vey helpful at all. This is not good enough. We need support when we are vulnerable, not blame and misunderstandings. Some extra autism knowledge among mental health clinicians could make such a difference.

Yesterday I went to the post office and picked up a registered mail letter. I figured out from the postie’s calling card that this letter was something special. It was my official name change certificate stating that my legal name is now Yenn Purkis. It was a good feeling opening that envelope and seeing my new name as being the name I am legally known as.

If you haven’t read my other blog post about this I changed my name mostly to reflect my non-binary gender identity. I came out as non-binary about this time last year. People asked me ‘will you change your name?’ I wanted to as Jeanette has never seemed right but changing my name seemed so drastic and involved. I couldn’t think of a name which worked either. I kept getting  stuck on Jann but that didn’t work any better than my Jeanette name. I decided to leave my name change decision to my subconscious. When the right name arrived I would know. And that is what happened. Yenn came to me instantaneously. I was at work and a thought popped into my brain then thought said ‘Yenne?’ I wrote it down and wasn’t happy. Then ‘Yenn’ came unbidden into my brain and I wrote that down and there it was. The actual decision took a split second. The only comparable experience from my life was when Mr Kitty and I bonded moments after I met his beautiful furry self. 

A friend who is trans asked me how I felt on the day of my name changing. I responded 

“Good. Strong and excited to get to be me. This has been a process over the past year. It isn’t as fresh and sparkly as it was but more grounded and ‘real’ if that makes sense. Since I came out I have had almost no status anxiety which was a huge issue for me before. I think I am so strong in knowing who I am that it gives me confidence in all areas of life. I feel awake. And thinking that people using my dead name are actually wrong in legal terms makes me smile. a lot.”

My name is a true liberation. It is also beautiful and poignant and meaningful. My subconscious did well. My name has a few specific meanings as well. In poetry to yen means to yearn and I am a very self-reflective yearn-y sort of person. It is also a nod to my old name without being too close. It is also agender, at least in Australia, and quite unusual. I have never met another Yenn. I used to feel my old name didn’t fit me. It was like a jacket that was too big with a scratchy label. In contrast, Yenn is like a comfortable knitted purple jumper which feels and looks just wonderful. 

It is interesting to see how people have responded to my pronouns and new name. Almost everyone gets my name right and almost everyone gets my pronouns wrong! This is a work in progress but it is also interesting. I think my name fits me really well. 

It is odd being a bit of a public figure who has changed their name. I had a work colleague ask me who this Jeanette Purkis person was who wrote all the books on the posters that a I have up at my workstation! I started my new job three weeks ago and nobody knows me as Jeanette in my new department, which is wonderful! 

I love that it is actually wrong to dead name me. Legally wrong. My actual official name is Yenn so deal with it any bigots that are out there! It was pretty special getting my certificate. It almost doesn’t seem real. I waited three months to officially change my name as I wanted to be sure it was ‘right.’ I can report that it is definitely right. Very right indeed. I am having a  name party in a couple of weeks. Yay to affirming identity and gender and being proud of who you are.   

 

The title of this post is something I often feel like saying. I struggle to remember faces. I have something called prosopagnosia or face blindness. This is not exclusive to autistic people but, like sensory processing disorder, it is something many of us experience. The part of my brain which processes faces is apparently the same as the part of other people’s brain which recognises inanimate objects. I like to think of it this way: I have come across a lot of tables in my life. Some of them I have really liked but it is a rare table that will stick in my mind for more than a short while. 

My prosopagnosia is probably on the more severe end of things as I forget most people’s faces. If someone is particularly distinctive I might remember them but often even distinctive-looking people change part of their appearance like their hair colour and I get totally thrown. If I know two people who look similar I also have difficulty. In school there were two girls who I couldn’t tell apart and both of them were bullies and they were friends with each other. It was a nightmare! People didn’t understand that someone couldn’t remember faces and they all thought me a total weirdo. Years later and I was in a documentary and an art show at a major gallery. Both opportunities were similar in my mind and the curator form the gallery and the movie director looked very similar and had similar dress sense. I remember spending a twenty minute conversation with one or other of them trying to figure out who I was talking to!

In the past I thought my inability to remember faces was shameful. It was almost a sign that I was rude and unkind in my mind, despite that not being the case at all. I had difficulty accepting and embracing my autism for some years and I thought prosopagnosia was an autism-related thing. I was quite ashamed of it and saw it as a failing. I wanted to remember people’s faces so much but it was just impossible. I would try and figure out who people were from context. This only worked some of the time and a lot of times I just had conversations with people who my brain rendered essentially strangers unless they dropped a  nugget of information into the conversation which would enable recognition.

A few years ago I started to see things differently. I started to tell people that I had issues remembering faces. They would usually look a bit puzzled and chime in with ‘Yes I forget names’ which is a different mental process I think. My understanding is that most people are wired to recognise other people. I think prosopagnosia is a neurological divergence whereas forgetting names is more related to memory and association. 

It actually was quite liberating to be able to ‘admit’ that I forget faces and not have to try and figure out who someone is from context. It is also doing others a favour by explaining prosopagnosia to people which will make it easier for anyone else who has it when they meet them.

I have noticed some interesting things about my facial recognition. I can remember some faces very well. Doing a little unpacking of this and I discovered that the people I will find it hardest it remember are those with cis gendered presentation and expression. If someone’s expression / presentation is androgynous and gender non-conforming I am a lot more likely to remember them! I have no idea why that might be the case but it is interesting.

Now I am quite well-known in the autistic community and the Disabled community there are a lot of people who know me and I have never met them. This is a bit worrying for me as I don’t know whether I am supposed to know who they are or not. These days I usually just say ‘Sorry, I don’t remember faces’ or ‘have I met you before?’ and that makes it a lot easier.

I think the key for me to get to a place where my prosopagnosia was manageable was that point at which I realised I couldn’t ‘fix’ my facial recognition and that I needed to accept it and be OK with discussing it with others. So yes, I have no idea who you are but that is OK. I will tell you and you can remind me and then I’ll know. 

There is a well-known statistic that autistic people are less likely to be employed than others by a significant margin. This is not at all OK and needs to change. Often even when people get a job they are unable to stay employed for a variety of reasons.

You might know that I talk a lot about employment and autism. And you might also know that I am a career public servant of over twelve years’ tenure in a middle management role. Evidently something is working in my employment world so I thought I would share some of the things I have in place which help to make my world of work pretty wonderful.

When I applied for my job in 2006 a number of friends poured metaphorical cold water on my ambition. One friend told me that he had done a similar role and was terrible at it so there was no way I would be able to do it. Another said that sort of job ‘isn’t autism friendly.’ I responded that if that was the case maybe I should do my best to make it autism friendly. And that is essentially what i have done. I have put in place measures which make work work for me. I have listed a few of them. I will say that most of these strategies won’t be as effective in a  toxic work environment although some of them can help to avoid things getting that way. Work can be really hard for autistic people and what works for me will not always translate to everyone else’s world of work. Keeping these things in mind, I thought I would share my strategies in case they are helpful to others.

• I have always disclosed my autism and also my mental illness (atypical schizophrenia) to managers and colleagues. I know disclosure is often a tricky subject but for me the decision was already made as I had a profile in the wider community as an autistic person. This default sort of disclosure was worrying at first but I soon discovered  it meant I could talk about any supports I needed with my managers and that if anything went wrong that I got to work through it rather than suffer in silence. (It is important to note that decisions around disclosure are personal and individual and sometimes it is not a good idea to disclose so this is just my personal experience.)
• I have always been actively involved in disability advocacy within my workplace as part of the disability employee network.
• I always ask if in doubt as to anything. Assumptions are the parent of most screw-ups in the workplace.
• If I need an adjustment or change I ask for it and explain why I do and how it will enable me to work better.
• I am consciously friendly and approachable. I’m pretty odd in my expression and do unconventional things without realising it. If I was grouchy people might think I am unpleasant and ‘weird’. While a few people do anyway, my being friendly tends to mean that people think I’m quirky and eccentric which are more positive interpretations of apparent oddness.
• I am unashamed about being autistic. I talk about autism and my advocacy work with colleagues. I pull people up – kindly – when they say something unhelpful like ‘we are all on the spectrum’. 
• I support other autistic people at work and allistic parents of autistic kids too. 
• When I have had issues with managers being difficult – micromanaging and that sort of thing – I confide in someone and where possible I change my role. There is little more soul-destroying at work than to have a manager who you don’t get along with.
• I have always sought out mentors and role models at work. These can help build my career and give some perspective on the work I am doing.
• I always have an exemplary standard in ethics and integrity. This is partially because there’s a few years of being unethical in my past but also because it is good practice to do so and is the right thing to do.
• I listen to music on headphones pretty much all day. This blocks out the noise in the office which I find distracting and also means I get to listen to nice music all day long which makes it easier to work well.
• I don’t try to mask and be something I’m not. If people have an issue with me then it is their issue. While that might sound hard, it improves with practice. 
• I am grateful to have my job. I reflect on this every day. Before I worked in the public service I was on the disability pension. I was very poor and had no choice as to where I lived. This meant I lived in a public housing estate where the neighbours were not very happy people and used a lot of drugs and alcohol. Because I was desperate to be liked I tried to fit in, meaning I drank  lot more alcohol than I wanted to. One of my neighbours was a stalker and I was tormented by her but I couldn’t afford to leave. I knew I needed to get a full-time job in order to move  into my own place. Twelve years later and I have my lovely Whimsy Manor which I only have to share with Mr Kitty!  Being employed for all that time has meant other positive changes, including in my self-esteem and how I view myself. So I am very grateful that I get to do such a lovely thing five days per week.

When I was diagnosed as autistic in 1994 I was told autistic people lacked empathy. Apparently we were cold emotionless robots and unable  to connect to other people. This was very early on in the history of autism so I guess this view might be seen as understandable, albeit wrong. What horrifies me is that 25 years later this view is still around and apparently thriving. 

There is a whole history to the ‘autistics lack empathy’ myth.  It is a very harmful view which sets back the cause of autistic acceptance and pride and perpetuates unhelpful views which harm autistic people. 

There is a clinical theory which justified this view. Thinking which has since been largely debunked around the idea of autistics being unable to form attachments with people. I am not an academic so cannot provide more than a high level refutation to that view but what I can do is share what I know as an autistic person, and as an autistic person who has met and knows vast numbers of other autistic people. My experience as well as others’ demonstrates that the empathy myth is just that.

One of the issues is that autistic people and allistic people tend to have different experiences of empathy. Autistics often experience hyper empathy where we pick up on the emotions of those around us almost as if by osmosis. When I stand near someone who is very sad I often feel their sadness. I once worked with a colleague who was very angry and I could feel their anger coming up the corridor well before I laid eyes on them.  I can tell if there are people in a room with a closed door as I can feel their emotions. These experiences are common to many other autistic people too. You may have a child who is very keen for everyone to enjoy their birthday party. This child may be afraid of picking up on others’ emotions if they are having a hard time and it ruining their experience of the party because people are sad. This kind of intuitive empathy, despite being very common, is not widely known about. I often mention it to other autistic people and they immediately relate even though this is not a concept anyone has told them about before. It can be a really difficult thing to experience the emotions of others around us. I have a mental illness and sometimes have to go to hospital. There is nothing worse when I’m unwell than to be in a building full of people experiencing misery and crisis and hospital is so counterproductive that I now tell my psychiatrist that I would rather be miserable at home with Mr kItty than in a building full of sadness and anger.

One issue feeding into the empathy myth is the different way autistic people view things like body language and eye contact. Many of us get little or no meaning from non-verbal communication. For me I cannot tell from non-verbal cues if someone is upset unless they are visibly crying or displaying their emotion in quite an overt way. In the past this has led to people thinking me cruel and heartless which in fact is not at all true. Like so many other autistic people I am kind and thoughtful and want to help people where I can but if I can’t tell that someone is having a tough time I will not know I need to be supportive. This is one of those misunderstandings caused by differences in communication styles between autistic and allistics. 

In a similar vein there is a mismatch between empathy between autistic and allistic. So while we are lumbered with the idea that we lack empathy, a lot of autistic people see allistics as lacking empathy towards us. The pathologising of autism dictates that this mismatch its usually only seen and written about in one direction but autistics frequently complain of a lack of empathy from allistics. I think this goes to the idea that we communicate in different ways, as if we are from different cultures. It is simply an example of a kind of cultural difference. How often are there misunderstandings between people from different countries because one side has made assumptions about the other? Well I suspect that this is what goes on in ‘cross-cultural’ type exchanges between autistic and allistic.

One thing I will say is that I am yet to meet a parent – autistic or allistic – of an autistic child who thinks that their autistic child lacks empathy. Autistic people can be the most thoughtful and considerate people. We so often care about how someone is feeling and want to be helpful. To me that is part of what makes the empathy myth so upsetting. Our good deeds and good intentions are so pathologised that the fact that we care and want to help is eclipsed by that pathology. 

I really hope that the empathy myth becomes a thing of the past as soon as possible. We do care, we are not robots, we just do empathy differently. Another case of different not less. Let’s work to get this myth firmly debunked because it is not helping anyone.