Dispelling the empathy myth – hyper-empathy and autism

I am often correcting people who believe the myth that autistic people lack empathy. One of the many things I say to refute this myth is that many Autistic people possess something called hyper empathy. Hyper empathy is where a person can experience the emotions of those in the vicinity almost as if by osmosis. It is very common amongst autistic people. 

I have a number of experiences of hyper empathy from my own life which illustrate the phenomenon.

When I was a child I had a friend whose father passed away. I found it unbearable to be close to her as I would experience her raw grief. I thought I must be a monster for not wanting to be near my friend when she was grieving. I believed it meant that I lacked empathy when in fact quite the opposite was true. Often Autistic children (and adults) will distance themselves from a friend or relative who is going through a tough time as a kind of self protection. If they are near a person in pain they feel the pain themselves and it can be unbearable.  

My hyper empathy has not lessened in adult life. I had a work colleague a few years ago who was extremely angry and unpleasant. I could feel her anger coming up the corridor long before she was in view from my desk. Her anger was like a tangible thing invading my mind. I liked that I got some time to prepare before she turned up and directed that anger at me – which she often did! I have an Autistic friend who accompanied me to a large event I was speaking at a few years ago. The audience was around 1300 people. I mentioned hyper empathy and being aware of the emotions of those around us to my friend and she told me she could feel that a person in the middle of the audience was having a really hard time and was very sad. So far from the stereotype of emotionally dead people who all lack empathy, Autistic people are in fact often extremely perceptive and aware of the emotions of others.

As many of my regular readers know, I have a mental illness which results in the need for hospital stays from time to time. I have said to my psychiatrist that I would prefer to be miserable at home with just Mr Kitty as company than be miserable among a ward full of other miserable people. Hospital is horrific for me and one of the main reasons for that is that in clinical settings I pick up on all the sadness, confusion, fear and anxiety of those around me. I am also a very caring person so I get a double whammy – I worry about the welfare of my fellow patients and I feel their misery when they are having a hard time. It results in me being very stressed in inpatient settings.

Allistic people don’t often understand hyper empathy which can mean that they dismiss it. I see it as part of what forms autistic culture – a mostly autistic experience which fellow autistics are more likely to relate to and allistics might not quite ‘get.’ I always find it telling when someone says to a room full of autistics that we lack empathy. The response is usually pretty emphatic and they are set right, but the empathy myth is a prevalent one and one we need to refute whenever it comes up. The empathy myth goes to ideas of autistics being somehow less human than others and as such is a very dangerous thing. The experience of hyper empathy is a good way to refute the empathy myth but not many people know it is a ‘thing.’ I often mention hyper empathy to other autistics and they tell me they have never heard of it – and then usually go on to tell me that it describes them! We need to get information out there on these topics and dispel that myth that we lack empathy once and for all as it is harmful and invalidating to Autistic people and our experiences.

Can we please just ditch the myth that autistc people lack empathy?

Our own worst critics – reconciling past ‘shame’

I have several scars on my left arm from self-harm in the 1990s. I have spent the past twenty years hiding them, worried that people will judge me or worse still ask probing questions. I have always felt ashamed of my scars. I am currently staying in a residential program for people with mental illness. There is a tattoo shop nearby which has good reviews. Up until very recently I planned to get my scars covered with a tattoo. This seemed a good approach to addressing the shame and judgement issue, but the other day one of my fellow residents made me change my thinking. I told her about my plans and she immediately exclaimed ‘don’t be ashamed of who you are. Be proud of yourself. Your scars are part of what makes you you’ I figure she had a very good point and decided not to cover my scars but to  cherish them.

This raises an issue many people have around shame at past decisions. We all make choices we are not proud of and I imagine everyone has something in their history that they are not happy about. It seems easier to hide these things and keep them from those we love and care about but actually they are part of what make us who we are.

Along with my scars I have a personal history which can be viewed as quite shameful. I spent three and a half years as a prisoner in the 1990s. After I started to live a more respectable and positive life I was highly secretive about my then very recent past. As a university student I invented whole years of personal history to avoid mentioning I had been in prison. Being a very honest person I ended up telling my university colleagues about my past not long afterwards and it was a big relief. In fact nobody really cared. If anything they thought it was interesting which just goes to show that the thing you think is shameful and mortifying may be viewed a lot more sympathetically by others. You might be highly anxious about something in your history and worry that others will find out but in fact they may be more understanding and kind about it than you imagine. We tend to be our own worst critics.

And what happens when someone actually does judge you for things in your history that you struggle with? Well to my mind that is the other person’s problem and it is their loss to miss out on your company and friendship. While being on the receiving end of judgement is horrible, it says a lot more about the other person than it does about you.   

It has taken me a lot of years to get to a point where I am comfortable with the more problematic bits of my personal history. Reconciling my present self with who I used to be has been a journey and not always a very easy one but it is a journey I am glad I made.

Yesterday I went to the shops wearing short sleeved shirt with my scars exposed and it felt really good. I have tried to do this a few times and struggled but I think I will now be able to show off the parts of myself which I feared would result in judgement from others because I am happy to own those parts of myself – physical and intangible. I am not ashamed and I no longer hate and blame myself for things I did a generation ago. There were real reasons for my self harm as a young person and I now realise that time in my life deserves understanding and kindness rather than blame from me. The worse judgement I have experienced in relation to my scars has come from myself not others and I need to let that go.

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Have things changed? Reflections after 15 years of advocacy

I recently responded to a post from another advocate who was concerned that their efforts had not achieved anything and that all their work to change things has resulted in little or no difference. My response was to refute that concern and state that things are very different than they were when I started working as an autism advocate in 2005, largely due to the actions of advocates.

I have the beautiful gift of quite a lot of hindsight when it comes to assessing societal changes around autism as I have been advocating for almost fifteen years. When I started I was only aware of about five other autistic authors active in Australia. The discourse around autism was so deficits-based it made me cry and allistic parents rarely said anything positive about their autistic children. Diagnosis rates for adults – and particularly adult women – were low and there was little or no understanding of intersectional  issues. Gender diversity was rarely mentioned and the sort of autistic community we have now simply didn’t exist.

I can categorically say things are different now and that there have been lot of improvements. Some of these include the vastly increased knowledge and understanding of autism in the wider community. When I started out most people had no concept of what autism was and their only reference point was the film Rain Man. While these days many people still have some pretty unhelpful views about autism, the conversations I have now with those who have no personal connection to autism are very different. People are a lot more receptive to what I have to say and I am often surprised by the level of knowledge others have.

Another difference is in the attitudes of allistic parents. I used to be terrified of meeting allistic parents as their attitudes were almost always highly negative. The idea that they were martyrs and somehow ‘victims’ to autism was rife. In some cases they viewed themselves as victims of their own autistic children! These attitudes still exist now and are prevalent in some areas but there is also a growing voice from allistic parents that embraces and respects their autistic children. I know a lot of allistic parents who are very receptive to my message and who are genuine allies for their kids. And when I meet parents of newly-diagnosed kids they may have some negative attitudes but they seem a lot more receptive to my message than their counterparts were in the past. There is still a lot of work to be done in this space but I have seen a clear shift since I started out.

There is also a much bigger autistic community and communities within that than ever before. A sense of connectedness and autistic pride is a lot more common than it was in the past. Once again there is still work to be done in this area and some of the online groups are cliquey and exclusionary. There is also some lateral violence which occurs within the autistic community where people attack others instead of fighting the oppression we face. I know people who will not be part of online autistic groups due to these issues so this is definitely an area for work.

Gender diversity and other Queer identities are much more visible within the autistic community than ever before. This is a great thing particularly given the significantly higher percentage of autistic people who are trans and gender diverse. However, against this positive is the issue of bigotry and transphobia, trolling and hatred levelled against trans and gender diverse people. Having a sense of pride and identity is great but until the bigotry has been addressed it will not be enough. This is an issue at an individual and a societal level and protections and respect for trans and gender diverse people are essential.

Areas where there is still a lot that needs doing include the prevalence of ABA, issues with representation and inclusion on decision-making bodies, issues with low employment rates and discrimination at work, bullying and mistreatment in schools and discrimination in health care – especially mental health care to name a few. We have definitely not ‘arrived’ yet and the work of advocates and activists is just as important and necessary now as it was in the past.

The positive changes I have outlined above have come about mostly due to the work of autistic advocates and activists and also allistic allies. I love that I can look back to a time where I was one of five or so people doing similar work and I am now one of thousands. The more the merrier where advocacy and activism are concerned. There is still a lot of work to be done but from reflecting on the past it is evident to me that things have changed and are continuing to change. It is essential to keep working to address disparities and oppression as these things are always up for grabs. It is not the case that progress will happen anyway and it is so important to keep going and keep challenging negative and exclusionary thinking and practices. So happy new year when it arrives and let us make 2020 a great year for progressing the good work which started long before I was on the scene.

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The trouble with power 

On Wednesday I was discharged form the locked psychiatric ward. I spent a week there and it was very unpleasant indeed. It triggered traumatic memories of when I was. a prisoner in the late 1990s but the main issue I had was the very evident power imbalance between patients and staff. I felt entirely disempowered and I noticed disempowerment was a universal theme of the place. As an advocate it was pretty hellish because there as almost nothing I could do to address the imbalance. I told the psychiatrist my concerns and she looked at me in a rather puzzled way. I told nurses and they assured me there was no power imbalance and it was a place of care but to me this was simply not true. It is not that all the nurses and doctors were cruel or unpleasant – some of them were lovely. The issue was that I had no control over anything and no input to decisions governing my treatment or even my everyday existence. It was horrible and I have no intention of returning there if I can possibly help it.

I talk a lot about oppression and privilege and ideas of intersectionality, Power – and the lack of it – underpins these discussions. Being oppressed often relates to that idea of disempowerment and people – and groups of people – having decisions made for them by those in positions of authority. The Disabled community – and within it Neurodiverse people – experience this a lot. Our reproductive rights, rights as parents, employment rights – including wages a lot of the time – rights in healthcare and other areas are so often under threat or simply non-existent. 

Disempowerment has some impacts on our interaction with the world. One thing I noticed in the locked ward was that there was a lot of aggression. Aggression can be the last remaining strategy of gaining some power for oppressed people but it is usually not a very effective one. When someone has few or no rights or control over their life, aggression is a understandable last resort but it can lead to sanctions and further disempowerment. Our prisons are not so much filled with bad people as disempowered people. Another impact of disempowerment is self-destruction. This can take many forms. When disempowered I usually go towards self-destruction. In a mental health context particularly this is another thing which can lead to further disempowerment.    

Disempowerment is often invisible to the powerful. I have a wonderful example of this from a friend who works in a corporate workplace. My friend is from a refugee background and very aware of diversity considerations. Her manager was putting together a conference and asked for her input. The manager is a white, cis gender, hetero, abled man. As such he does not belong to any disadvantaged or oppressed groups – not a criticism of the man, but an indicator that issues around oppression are likely to be quite alien to him. My friend looked at the speaker list the manager had come up with and was horrified. She said to him ‘you have no women and no People of Colour on this list. This is not inclusive.’ The manager was amazed at my friend’s apparently incredible knowledge of inclusion and told her this. It was probably not the case that the manager had intentionally left people from oppressed groups off the speaker list, simply that he didn’t realise what he had done. This was also the case in the hospital. When I told nurses that the power imbalance was awful they simply dismissed it. I doubt they were bad people or intentionally wanted to compound the issue, they just couldn’t see it because it was not an issue for them. It is not always the case that those propping up structures of power are aware they are doing so!

What is the solution to this? Unfortunately there is not an easy solution. The uneven distribution of power is something people have been trying to address for centuries. The structures of power in society have been there a long time and me writing a blog probably isn’t going to address the problem in any practical way. However, there are a few things which I think can make a difference.

  • Anything which genuinely empowers oppressed people – and groups – is probably a good thing. For example if my friend’s manager had booked speakers for the conference who were women, or trans or People of Colour or Autistic it would have been a good thing as it would not only empower the speakers but would help to shift the dynamic of disempowerment.
  • Advocacy and activism are a big positive. The more people doing this, the better. Allies (those who are not from oppressed groups themselves but who are true supporters – and don’t make it all about them!) make a positive difference as well.
  • Services which are inclusive and respectful. Training on issues around oppression and disempowerment for staff working in services is really important too. As I have discovered, that ignorance among staff that there is even an issue is a big barrier in and of itself.
  • Pride, respect and positive self-knowledge for oppressed people is a biggie as well. This can take a huge variety of forms from things like the National Awards for Disability Leadership, to the Sydney Gay and Lesbian Mardi Gras to genuine, inclusive representation in media to acts of self-determination. These are all great ways of building pride and respect. 
  • For Autistic people, ideas of Neurodiversity and Autistic Pride can help with both empowerment of individuals and also all of us collectively.    

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Mental health clinical settings and autism – some personal insights 

Content warning – reference to mental illness and institutional settings 

I just sent over six weeks in psychiatric hospital due to my mental illness. It was exceedingly unpleasant as it usually is. I have had a large number of admissions to psychiatric wards in the past 25 years. I want to unpack some of the issues autistic people face in mental health clinical settings and provide some thoughts on how these services could be improved.

Many autistic people have co-occurring mental health conditions. I myself have schizoaffective disorder which means I experience psychosis and mood issues. Some autistic people find themselves in psychiatric hospitals and other clinical support services. It is rare to hear a positive report from autistic people on their experience in these settings.

Some of the issues we can experience in mental health clinical settings as autistic people include:

  • Ignorance and prejudice from staff. Training for mental health workers still includes little reference to autism meaning that staff – psychiatrists, nurses, psychologists etc – may have little or no understanding of what it means to be autistic and how autistic people experience the world and experience mental illness. This can make stays in hospital and other clinical settings very unpleasant indeed and result in poor treatment and assumptions from staff.
  • Misdiagnoses. It is very common for autistic people to be misdiagnosed with mental health conditions they do not have, often instead of an autism diagnosis. A misdiagnosis can be really damaging for a variety of reasons, not least of which is the damage it causes to our sense of who we are, our identity as autistic people. It also means the treatment we receive will not be targeted to our needs and we may miss out on effective treatment for our illness. I had a psychiatrist once who read a paper which said autistic people cannot have psychosis. This mean he stopped my anti-psychotic medication. Guess what? I then got really unwell with psychosis and spent the next two years in and out of hospital and was very scared and miserable. Getting the diagnosis right is extremely important for everyone but particularly for autistic people.
  • Sensory issues. Imagine you have sensory processing issues and are in the locked ward where there is something which triggers your sensory issues? There is nowhere to go and staff may not listen to your concerns or be unable or unwilling to do anything to alleviate it? Not nice at all and this can lead to meltdowns, overload and things seen as ‘poor behaviour’. The worst thing is that this may mean you are kept in the hospital – along with the sensory triggers – for even longer! I know of people who have been in this situation for years and it is as close to Hell as I can imagine.  
  • Misunderstanding of meltdowns. Autistic meltdowns are a response to overload – a release valve for too much sensory, emotional, social or other input. They are NOT poor behaviour but they are often seen that way by hospital staff. During my recent admission I had a couple of meltdowns and thankfully I was able to explain afterwards what had happened and why and staff listened to my explanation and took it on board  but in the past this has not been the case, ‘Poor behaviour’ can result in sanctions within the hospital which if anything make meltdowns more likely to occur!
  • Hyper-empathy. Many autistic people experience the emotions of those around them, known as hyper-empathy. Imagine being in hospital with a number of sad, angry, scared and confused people when you are unwell yourself? The emotions of those around you merges with your own misery and makes things even harder. I experience this and it is awful and not well understood. I tend to spend time in my room to be away from the emotional input of others but this can be seen by staff as isolating behaviour. 
  • Sharing space with others. Being in a small space with lots of other people is not something many autistic people are keen on! I live alone so being in close proximity and sharing space with lots of others only adds to my misery and anxiety. 
  • Bullying and abuse. I have been bullied and experienced abuse in hospitals on a number of accessions. On one occasion I was assaulted by a fellow patient. I was really upset and told the nurses. They said I should ‘be less annoying.’ Bullying and abuse – and victim-blaming – is never OK but it can happen in these settings. 
  • Uncertainty and inconsistency. Being away from routine in an often inconsistent environment is really hard anyway but when you are unwell it is even harder. The level of uncertainty in psychiatric hospitals is immense and can contribute to mental health issues for autistic people.

Some solutions 

The biggest solution to these issues centres around building knowledge and understanding of autism among staff in mental health clinical settings. The issues I have described above almost all involve a lack of autism knowledge amongst staff. Other related solutions include autistic people – and everyone else using the service – being listened to and respected. There are also solutions inherent in the design of facilities in terms of sensory issues and consulting with autistic people in the design of facilities. I would like to see autistic peer mentors employed too. These solutions are not necessarily hard or expensive to implement.

Shortly before I was discharged I gave a talk to some of the nursing staff at the hospital I was in. The talk covered similar topics to this post. It was really well received and apparently nurses were quoting me afterwards to their colleagues who could not attend. I want this kind of information to go to everyone how works in mental health clinical settings because I think it would go towards making some very necessary change. 

Autistic people have the right to access mental health services which are inclusive and supportive and to have our needs respected and understood. Hospital should be a helpful experience, not an ordeal. 

I want a world where health professionals - and especially mental health professionals - listen to and respect autistic people

 

It’s OK not to be OK

Yesterday I won an award. Yay to that. It was an award for lifetime achievement in disability advocacy. As I walked up to the stage they read out a bunch of my various achievements. I have quite a lot of them these days. In fact my complete advocacy CV is 26 pages! The interesting thing about this is that I am currently an inpatient in the psychiatric ward and have been for the past six weeks. I was on leave to attend the awards. I felt totally overwhelmed and emotional most of the evening and found it very difficult – wonderful, but difficult. In my speech I talked about how it is actually OK to not be OK. I am an overachieving advocate AND someone having a really tough time and that is not only OK but quite common for those of us in the disability advance space.

Leadership for Disabled people often involves a fair amount of not being OK. The issue is there is an expectation for us to push through, to put on a mask of being super people and being able to do everything and when we are not OK to dismiss it. I have done this for years and I can say it is not only unhelpful but it is dangerous.

On Tuesday I was set to be part of another event. I was meant to MC the National Awards for Disability Leadership. The organiser had put in place measures to ensure I was supported – namely a co-MC who could take off the pressure. The co-MC ended up taking off all the pressure as I cancelled. It was a really hard thing to do. I felt like I was letting down the organiser and felt guilty but I knew if I had done the gig I would have not done a good job and it would have had a negative impact on my mental health. So I said no and it was absolutely OK to do so. This was a liberating experience and I think actually demonstrated some good leadership despite conventional wisdom saying that my cancelling was ‘failure’. 

This last six weeks I have had to tell a lot of people and organisations that I cannot do things due to being unwell. The world has not ended. My reputation as an advocate is still intact and I even still have 10,000 followers on my Facebook page! I simply told people that I was unwell and unable to do the various things they had asked me to do. Maybe some organisations I cancelled on will not book me as a speaker again, I’m not sure but it actually doesn’t matter. That has been an important lesson for me to learn.

Leading up to becoming unwell I was working the equivalent of two full-full-time jobs – my actual full-time job and a bunch of advocacy things. I now know that is not OK for me to work that much. I also know that others can do things and I don’t have to do ALL the advocacy things myself! I can decline something. In fact I am planing to adopt a Marie Kondo approach to advocacy and only do the things which spark joy. 

I was talking to a similarly overly-achieving friend facing similar issues about this and I said that we needed her to be around to be a leader. Burnout for many if us can be life-threatening. We need to stick around to make a difference and not run ourselves into the ground overworking and taking on a bunch of responsibility. It is OK to say no and it really is OK to not be OK.

People with disability – and especially leaders in the community – often feel we need to prove ourselves and demonstrate that we can do EVERYTHING. It is actually helpful to ditch this attitude. We come with great strengths but we shouldn’t have to somehow convince others that we are superhuman. Accessibility is about having the right supports in place to do what we do rather than glossing over times when things are tough.

It really is OK to not be OK. I think this is an important message for everyone. It is one I have needed to heed myself for some years. Rest assured that I will be keeping it front and centre of my thinking and I will say ‘no’ when I need to say no. I am not ashamed of being not OK. It is part of me and it really is OK.   

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Taking your power back: Advocacy and personal power

Yesterday I took my power back. I woke up saying to myself ‘I will get better, I will go home and I will take Mr Kitty home.’ Not big statements in the scheme of things but for me at this point in my life that was one of the most significant statements I could have made. Some context: I have been in the psych ward for a month and have been having one of the hardest admissions I have ever had. My mood has been so low that I get to a point where I am so sad I don’t care what happens to me. Cue verbal aggression and emotional outbursts and a lot of threats by hospital staff to send me to the less pleasant hospital across town if I do get a handle on things. Until yesterday I felt powerless to the illness, I felt like I had no control over what happened and how I responded. Not so much the case now. I am the boss.

My powerlessness was not only about my illness though, it was also about the situation I am in – essentially an institutional setting in a society which discriminates against those with mental health issues. All these elements of power impacted on my ability to have my usual sense of personal power. It is nice to have it back that’s for sure but certainly not my ‘fault’ to have been missing it,

Personal power is an interesting concept. I used to be a revolutionary socialist and we didn’t talk much about personal power. we were much more interested in social power. Workers’ revolutions, strikes, that kind of thing, but oppression takes a toll on personal power as well and this is a huge issue for oppressed people.

Some people are so disempowered that they become aggressive and violent. The only power they can access is intimidating other people but this sadly serves to make them even more powerless and subject to institutional care. I often say violence can be the the last weapon a powerless person has and the only one they are aware of having. It doesn’t make it OK but it goes towards explaining it.

Most oppressed people do not respond to powerlessness through violence but through other ways – self-hatred, self-doubt, lateral-violence (where people criticise others in their communities instead of fighting the powers that be). Practical-type issues of oppression like unemployment and social alienation can also relate to a lack of personal power.

Our society and many of those in it is spend a lot of time sapping the personal power of oppressed people through bigotry, hatred, stereotyping, bullying, assumptions, discrimination and messaging about how incompetent and useless we all are. It is a hard thing to take power back in the face of all of this but it is possible.

Some ways of taking power back include

  • Advocacy and activism
  • Positive roles models from your community 
  • Positive representation in media etc
  • Gradually building your personal power through celebrating achievements, whatever those may be
  • Having events to celebrate the achievements of oppressed people
  • A sense of shared pride in your community
  • Having the opportunity to share your experience with allies and supportive friends

In the scheme of power, me telling my metal illness to eff off yesterday was pretty minor but I imagine it will have ripples into my life and maybe the lives of others, As an advocate having personal power is pretty essential. In fact this blog is an effect of my statement yesterday and I am hoping others will find it helpful and even that it might give them more personal power or the capacity to build theirs.

Personal power makes us bigger people. It makes us strong and proud and strong and proud oppressed people can change the world in a variety of ways, so yay to taking bacl your power,

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