A passion for passion – why Autistic interests are important

This is a post about passions and motivation for Autistic people and why our passions are so important to us.

When I was thirty I wrote a book. Writing the book was actually one of the best ways in which I could address my challenging past. My motivation to write that book was immense. I was driven to write it because it was a catharsis, a means of putting the awful things form my earlier life into a useful format and exorcise those demons. Drafting the book took four weeks and editing it took two. It almost took the publisher longer to send me a ‘we are sending you a contract now Ms Author’ email than the book had taken to write!

After I wrote the book my motivation turned to other things – getting a professional job among them. While I was strongly motivated to do these things, they were not a passionate interest.

For a few years after i wrote my book I had no clear motivation. I was a poor sad person  without an interest or driving passion. I had some vague notion that my book wold be discovered and I would have a bigger audience, that I would be asked to speak at conferences and things. My mentor writing my autobiography was author and all ‘round legend Donna Williams. Emulating her professional life seemed like a nice thing to do. Donna was always getting emails form overseas and being asked to do things. ‘That’s really nice’ I thought but it was not a passion. You cannot manufacture a passion – it is either there or it isn’t.

In 2012 I met a young Autistic man who was so lacking in independence it horrified me. Anyone who has seen one of my resilience or employment presentations would know this young man. I call him’Adam’ publicly. When I told Adam that I worked for the public service, had written a book and was autistic he told me flatly that I was a liar. Apparently my life was impossible for an Autistic person. I realised that the Autism diagnosis – which  i had always though led to positive things for those diagnosed – in fact could lead to an unintended consequence of Autistic people lacking confidence and feeling unable to join the world in the best way for them.

Adam and his situation stirred in me that dormant passion. I didn’t care whether I was well-known, wrote books or anything else but I was going to make it my mission to support Autistic young people to aim for their potential and hopefully reach it, whatever it may involve. Within weeks of meeting Adam I had starting drafting what would become my second book, The Wonderful World of Work. This book is aimed at teens on the Autism spectrum to build their understanding and confidence around employment/ It emphatically places the idea in the world that Autistic people can and do work and with the right supports and understanding from employers and colleagues the workplace can be a positive place for us. That book was also completed in a short space of time and accepted almost without amendment. It was at around the time I wrote this book that I noticed a change in how my work was perceived within and out of the Autism community. I was approached to audition for a TEDx talk in 2013, invited to all sorts of conferences and events.

After six years of being a little-known Autistic author, the direction of my work changed. I went from having some vague notion of sharing my message on autism without really understanding what that meant to being filled with a fire, a drive to actually change the world in whatever small way I could.

After a few years my passion is as strong as ever. My love is my advocacy work and writing. People ask me how I do all the work I do. I always answer ‘because it isn’t work.’ I like to imagine an Autistic child who loves My Little Pony (or whatever) in relation to my passion.  Picture that child and their love for MLP, their encyclopaedic knowledge of that world. Then transfer ‘My Little Pony’ for ‘Autism advocacy’ and ‘child’ to ‘Jeanette’.

I suppose that brings me to crux of this post. Autistic children’s passions are often called obsessions and seen as a distraction at best or an annoying waste of time. Their obsession with a topic is often greeted with adults telling them to stop talking about their interest. Sometimes kids are kept from their interest. Calling something  an ‘obsession’ sort of sets up a semantic issue where that thing is devalued from the outset. Last year I was named ACT Volunteer of the Year all because of my ‘obsession.’ People tell me all the time that my work has helped them or their kids. But why does my interest get to be valued and respected when it is as much an ‘obsession’ as the more esoteric interests of children and adults? My passion was fed by my passions as a child. In my early life I had some interesting passions – cats, fungi, space exploration, Dr Who, the Cold War and Trotskyism. Wen I was a child and teen I was often told to stop focussing on my interest. So let’s have a quick look at the jobs my ‘obsessions’ might have led to had I kept them up:

  • Botanist / mycologist
  • Author
  • Actor
  • Veterinary surgeon or veterinary nurse
  • Astronomer
  • Physicist
  • Historian
  • Academic in one of a number of fields

For Autistic children – and adults – their passion is a key part of their enjoyment of life. Taking away their interest actually may mean taking from them the one pleasurable they have in a hostile and unpredictable world. Certainly if interests relate to dangerous activities this requires attention but most of our interests are harming no-one and helping us to enjoy our world.

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Me getting a standing ovation for obsessing and talking about my special interest for a whole hour! 🙂

How Whimsy Manor got its name (or how a cat changed my life)

My apartment is called Whimsy Manor and is filled with art and pretty things, silk flowers, books by friends and by me (and many other books), photos of friends and family, a fair number of awards and the usual stuff you find in houses – furniture, a TV and a laptop. I have owned my home since 2009 but it did not get a name until 2013. Here is the story of Whimsy Manor and it’s most lovely – and naughty – inhabitant who is a person of the black cat persuasion and a very close friend and ally against those demons my brain tends to create.

Whimsy Manor started out as a compromise. I bought it because my housemate at the time was a controlling bully and I had no assertiveness at all. I thought that she would think me buying my own place was not a personal slight against as moving to another rental would have been. My budget meant I needed to buy the cheapest apartment I could in Canberra and near a bus route. The apartment I picked had been built the month I was born. The flats were initially built as public housing for low income people but had been sold to private owners in the 1980s. The walls were sturdy concrete and probably built to withstand the end of the world but it soon became apparent the plumbing was less so. I had a number of expensive and stressful plumbing issues, the worst of which being the need to replace the leaking shower.

My anxiety about the maintenance, trustworthiness of tradies – or not – and expenses took over my life. I thought my walls would collapse while I was asleep. As can happen for me, all this stress turned into psychosis. I had a very unpleasant few years.

Now, to the bit about the cat. I am a cat lady. I was a cat lady when I was five years old. Like many Autistic people I have an affinity with animals which surpasses almost anything else. I know cats and up until moving to Canberra I have always had a cat. The controlling former housemate had two cats and they were the most unpleasant felines I have ever met. If they were children at the time I was growing up, they would have been described a ’spoilt’. These unpleasant cats and my association of them with their unpleasant human owner did something  I would never have thought possible in that it put me off having a cat!

When I was unwell and worrying about the structural integrity of my house along with my mental health, several friends suggested quite strongly I would be better off with a cat but I just responded with a list of reasons it wouldn’t be a good idea. I thought that if I couldn’t look after myself, how could I care for a cat? All this changed one day I was off work. I went up to put out the garbage and as I was about to enter my house I saw a little tabby cat sitting on the wall. I gave him a scratch behind he ears and he purred. It was lovely. When I got inside I realised that when I was patting the cat I did not feel unwell. Actually I had felt quite good. ‘I need a cat.’ I thought – and what a wonderful realisation that was! I was very fortunate that I had a friend at the time who was the local cat rescue person. I called her and said ’I need a cat!’ She came the next day with four cat carriers. The first three were full of very cute kittens, filled with mischief and curiosity. They were lovely but I didn’t want one of them. The last carrier had an adult cat, a big black one who my friend said didn’t get along with the other cats. The cat, who had been given a generic black cat name like Shadow or something, let out a sad yowl. In response I did something which anyone who knows cats knows you shouldn’t do: I picked up the grouchy cat and held him to me. He just snuggled in and started purring. He has been purring – on and off – ever since. At that moment he became Mr Kitty. In that moment my life actually changed.

My friend took all her kittens home – including the two feral ones which has got stuck under the washing machine and needed rescuing apparently for a second time! The black cat stayed wiht me. I loved him from the moment we connected and I always have,

Mr Kitty was the most challenging cat I ever had. He destroyed furniture and carpet and his way of asking for anything – food, attention etc – was to bite my feet! But this was just how he was. I think both of us knew that we belonged to one another and that would never leave him or given him up. He had been a stray for some time before I got him and his anxiety around food broke my heart. I would leave a bowl full of cat biscuits for him but when I got home from work he wouldn’t have touched them. As soon as I got in he would finish the food. I think he was worried I wouldn’t come home and he would need to ration the food.  He doesn’t do that anymore. In fact he is one of the happiest cats I know. I often find him in the hallway just sitting there and purring for no apparent reason.

My mum does not share that strong bond with animals I have. She is allergic to cats but even she knows he is very important to me. She says he is a gift from God (which always makes me smile as I imagine God dispensing kitties for people who need them).

The biggest difference Mr Kitty has made is in my attitude about my home. A few months after I got him I started thinking of my home as a positive thing, In the past I had wished I could live at my workplace after hours but then I started looking forward to the little furry person waiting for me at home with cuddles and purrs. My house became known as Whimsy Manor and I started on my work to make it a home with as much character as a small apartment could have. People now come to Whimsy Manor and many say it is a very warm and positive place. Some of my friends tell me how Mr Kitty is like another friend, not just my cat. To me he is certainly much more than ‘just’ a pet. He really did change my life. I always say that I rescued Mr KItty and he rescued me. (And he is nibbling my left foot so I’d better give him some biscuits….)

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This b;go was recently named one of there top Autism resources on the Internet by the Art of Autism. Cool! 🙂

How Whimsy Manor got its name (or how a cat changed my world)

My apartment is called Whimsy Manor and is filled with art and pretty things, silk flowers, books by friends and by me (and many other books), photos of friends and family, a fair number of awards and the usual stuff you find in houses – furniture, a TV and a laptop. I have owned my home since 2009 but it did not get a name until 2013. Here is the story of Whimsy Manor and it’s most lovely – and naughty – inhabitant who is a person of the black cat persuasion and a very close friend and ally against those demons my brain tends to create.

Whimsy Manor started out as a compromise. I bought it because my housemate at the time was a controlling bully and I had no assertiveness at all. I thought that she would think me buying my own place was not a personal slight against as moving to another rental would have been. My budget meant I needed to buy the cheapest apartment I could in Canberra and near a bus route. The apartment I picked had been built the month I was born. The flats were initially built as public housing for low income people but had been sold to private owners in the 1980s. The walls were sturdy concrete and probably built to withstand the end of the world but it soon became apparent the plumbing was less so. I had a number of expensive and stressful plumbing issues, the worst of which being the need to replace the leaking shower.

My anxiety about the maintenance, trustworthiness of tradies – or not – and expenses took over my life. I thought my walls would collapse while I was asleep. As can happen for me, all this stress turned into psychosis. I had a very unpleasant few years.

Now, to the bit about the cat. I am a cat lady. I was a cat lady when I was five years old. Like many Autistic people I have an affinity with animals which surpasses almost anything else. I know cats and up until moving to Canberra I have always had a cat. The controlling former housemate had two cats and they were the most unpleasant felines I have ever met. If they were children at the time I was growing up, they would have been described a ’spoilt’. These unpleasant cats and my association of them with their unpleasant human owner did something  I would never have thought possible in that it put me off having a cat!

When I was unwell and worrying about the structural integrity of my house along with my mental health, several friends suggested quite strongly I would be better off with a cat but I just responded with a list of reasons it wouldn’t be a good idea. I thought that if I couldn’t look after myself, how could I care for a cat? All this changed one day I was off work. I went up to put out the garbage and as I was about to enter my house I saw a little tabby cat sitting on the wall. I gave him a scratch behind he ears and he purred. It was lovely. When I got inside I realised that when I was patting the cat I did not feel unwell. Actually I had felt quite good. ‘I need a cat.’ I thought – and what a wonderful realisation that was! I was very fortunate that I had a friend at the time who was the local cat rescue person. I called her and said ’I need a cat!’ She came the next day with four cat carriers. The first three were full of very cute kittens, filled with mischief and curiosity. They were lovely but I didn’t want one of them. The last carrier had an adult cat, a big black one who my friend said didn’t get along with the other cats. The cat, who had been given a generic black cat name like Shadow or something, let out a sad yowl. In response I did something which anyone who knows cats knows you shouldn’t do: I picked up the grouchy cat and held him to me. He just snuggled in and started purring. He has been purring – on and off – ever since. At that moment he became Mr Kitty. In that moment my life actually changed.

My friend took all her kittens home – including the two feral ones which has got stuck under the washing machine and needed rescuing apparently for a second time! The black cat stayed wiht me. I loved him from the moment we connected and I always have,

Mr Kitty was the most challenging cat I ever had. He destroyed furniture and carpet and his way of asking for anything – food, attention etc – was to bite my feet! But this was just how he was. I think both of us knew that we belonged to one another and that would never leave him or given him up. He had been a stray for some time before I got him and his anxiety around food broke my heart. I would leave a bowl full of cat biscuits for him but when I got home from work he wouldn’t have touched them. As soon as I got in he would finish the food. I think he was worried I wouldn’t come home and he would need to ration the food.  He doesn’t do that anymore. In fact he is one of the happiest cats I know. I often find him in the hallway just sitting there and purring for no apparent reason.

My mum does not share that strong bond with animals I have. She is allergic to cats but even she knows he is very important to me. She says he is a gift from God (which always makes me smile as I imagine God dispensing kitties for people who need them).

The biggest difference Mr Kitty has made is in my attitude about my home. A few months after I got him I started thinking of my home as a positive thing, In the past I had wished I could live at my workplace after hours but then I started looking forward to the little furry person waiting for me at home with cuddles and purrs. My house became known as Whimsy Manor and I started on my work to make it a home with as much character as a small apartment could have. People now come to Whimsy Manor and many say it is a very warm and positive place. Some of my friends tell me how Mr Kitty is like another friend, not just my cat. To me he is certainly much more than ‘just’ a pet. He really did change my life. I always say that I rescued Mr KItty and he rescued me. (And he is nibbling my left foot so I’d better give him some biscuits….)

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This blog was recently named one of the top Autism resources on the Internet by The Art of Autism. The author is very happy about this although Mr kitty isn’t all that fussed 🙂

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Why we need to say goodbye to functioning labels

When I was a young girl in primary school I started going to this place on weekends called Byron House. Most of the other people there were boys and they liked to play chess, which wasn’t really my thing. I don’t remember anyone telling me why I was there. I don’t even remember what I did there although I’m fairly certain it didn’t involve playing chess with a bunch of aspiring grand masters! I found out later that Byron House was a program for gifted kids and I one of those. Apparently my IQ score in primary school was very high and my voracious appetite for books, love of writing poetry and interest in topics apparently more mature than my years put me in the gifted group.

Intellect is not a quality I care a lot about. I have enough of it that I can do all the things I need to but it is not the key part of my work. However intellect and giftedness in Autistic people – as well as others I suppose – can become a more curse than blessing at times, particularly when it joins that problematic concept of ‘high’ or ‘low’ functioning.

I have a friend who has two children who are Autistic. The older boy is similar to me in many was – extroverted, quick-witted, can do his school work without to much need for assistance or intervention. This young man has been given the ‘high functioning’ label. His younger brother is more introverted and doesn’t speak much. He has some more noticeably different behaviours which bring him to the attention of staff a school. This young man has been given the ‘low functioning’ label. My friend tells me what usually happens when educators and others meet her children: The older boy has very high – often unrealistically high – expectations placed on him, while his brother’s skills and capability is almost always ignored in favour of low expectations. The older boy gets little or no help even if he really needs it and his brother rarely gets the opportunity for stretching or taking on challenges. This is one of the many issues with the functioning labels applied to Autistic people and the expectations which often surround them.  Applying a functioning label can rob Autistic kids and adults of the opportunities and /or supports they need simply based on assumptions around intellect and ‘functioning.’

High and low functioning Autism are not actual diagnostic criteria within the literature. They are a sort of unofficial – and subjective – addition to the Autism diagnosis. Unfortunately they carry a lot more weight in society than they should. I am often described as ‘high functioning’. This is usually a shorthand for being verbally articulate and able to mix in non-autistic society, to study and work and so forth. If you look at me and my prodigious over-achievement of recent years, I am probably extremely ‘high functioning’ for any human being, Autistic or otherwise! However lives are not static. Twenty years ago I can tell you exactly where I was at this time of day on this date. I was in the management  unit at what was then known as the Metropolitan Women’s Correctional Centre in Melbourne: a privately-run hell where I engaged in all manner of self destructive activities which if I were an Autistic child in  school would have almost certainly have attracted the ‘low functioning’ label. This illustrates that functioning is a matter of time and experience and environment. I know certain people will say ‘but this person doesn’t speak. They can’t work, they are low functioning,’ The statement contains a lot of quite unhelpful, not to mention insulting, assumptions. There are a number of Autistic activists and advocates who do not speak. Their advocacy is no less valuable because their voice comes form an iPad or laptop. The notion that people who don’t speak must of necessity have nothing to say is offensive and just simply wrong. Historically the ability to speak using vocal chords and words has been used to signify intellect and selfhood. This needs to be addressed because it is incorrect and incredibly invalidating for those who use non-speech communication.

Another problem with the functioning label, aside from it being based in quite a narrow notion of ‘function,’ is that is sets out a sort of path for people to take. It predicts what will happen in a person’s life and often this is not helpful at all. I have a friend who is a professional designer and is Autistic. He attended a specialist school for most of his primary years. His parents were told he was ‘low functioning’ and would not cope in mainstream education. Preferences and arguments around types of schooling aside, this person who was given the path for ‘low functioning’ in fact went to university and proved all of those stereotypes and assumptions wrong. This makes me wonder how many other kids and their parens are given the ‘path’ which in fact will result in them not leading the fulfilled life they otherwise could? Functioning labels come with a whole load of assumptions and in my experience assumptions and Autism are a dangerous mix often resulting in people being denied rights and opportunities.

I guess these issues relate to Autistic people being held up against measures based in non-autistic experience and values. They essentially say ‘how normal are you?’ They can either throw people in the deep end minus any support because they are apparently so ‘high functioning’ or they can result in a child and their parent/s having a predominantly pessimistic view about their future. I would like Autistic individuals to be treated on their own merits and experience, Some blanket functioning label based in a limited understanding about Autism not much use for individuals. We really need to stop using these functioning labels as hey cause a lot more harm than good and are essentially meaningless.

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I had to add that my blog was selected as one of the 33 best Autism resources on the internet by The Art of Autism. Cool.

 

Jeanette the hydrangea bush: psychiatric labelling and Autism

I wrote this on social media after seeing my very nice and respectful psychiatrist last week:

Saw my psychiatrist- additional medication prescribed. He also thinks I have bipolar. Meh, another diagnosis….

A friend asked if I have schizophrenia (my most commonly-occurring former diagnosis) or bipolar and I wrote this –  Probably an autistic variant of one or other. Hard to fit with non-autistic mental health labels when Autistic experience – and presentation – tends to be different. Like all diagnostic tags the mental illness ones have two purposes – accessing assistance / support and identity. I don’t need a specific identity around mental illness – happy just to identify as a person with mental illness given the overlap between the conditions. And either schizophrenia or bipolar allow me to access the same supports and meds so I don’t mind one way for the other.

I think this is quite interesting, both in terms of my own mental illness journey but also, I would imagine, for others on the Autism spectrum. If you talk to Autistic people who also have a mental illness – and even some who don’t – they will often have similar experiences to mine around diagnosis. The Autistic person with mental  illness seems to present a little differently to the non-autistic person with the same mental health condition. Unfortunately a lot of psychiatrists and other clinicians seem to want to fit the person into the diagnostic label rather than observing the person and finding a ‘label’ that fits them appropriately and allows them to access support and the best interventions to address their mental health issues.

Since 1995 I have had the following mental illness labels:

  • Schizophrenia (and autism)
  • Schizoaffective disorder (and autism)
  • Atypical psychosis (and autism)
  • Psychotic depression (and autism)
  • depression (and autism)
  • bipolar (and autism)
  • Borderline personality disorder (and non-autistic).

You may notice something about this list. All the conditions except one were diagnosed by psychiatrists who had enough understanding of Autism to add it into the mix of my various attributes. The only one label which does not have me as Autistic is the one where my Autism and mental illness symptoms were completely misunderstood. I think this one might warrant a bit of a case study.

In 1996 I became very unwell with psychosis and depression and found myself in the psychiatric hospital near where I lived. I was there for a month and was then discharged, probably a bit earlier than I should have been. I was still very unwell and a few days later was sent to a different psychiatric hospital in the same region. The chief psychiatrist here was almost a parody of the worst side of his profession – he was arrogant, had very little empathy with his staff and had an unusually adversarial approach to people with mental illness. A nurse who trained in this hospital related that this chief psychiatrist thought people self-harmed ‘to get attention,’ despite this rather judgemental piece of reasoning for self-injurious behaviour having been largely discredited, even then in 1996. He was also quite misogynist and almost every woman in the hospital was diagnosed wiht borderline personality disorder. Anyone who has an interest in mental illness will probably be aware of the fraught nature of the borderline diagnosis. It has been described as stemming from the view that women are histrionic and manipulative. All I know is that when I was given this diagnosis all the support and kindness I had previously from mental health clinicians turned into blame. My new diagnosis meant I was seen as being 100 per cent responsible for my decisions. I was told I was being manipulative and a bunch of other nasties, so my aggression – which almost certainly came from paranoia mixed with Autistic meltdown and which I would have given anything to learn how to stop doing – was addressed through legal sanctions rather than medical support. The scary thing – or one of many scary things – around the borderline personality disorder diagnosis is that it is a misdiagnosis frequently given to Autistic women.

Autistic women and our experiences tend to not be very well known in psychiatry, even now. A few of the features of borderline personality disorder are issues with regulating emotions and difficulties with your identity. Autistic women often have alexithymia. Somebody who seems out of touch with their emotions and then has a meltdown in response to emotional / sensory overload probably looks to a clinician like they have emotional disregulation. Similarly, Autistic women and people with borderline personality disorder both tend to have identity challenges. However for Autistic women these are more likely to be related to trying to be accepted by peer groups. To a outsider though, someone becoming a socialist and then  a born again Christian looks more like they have issues with their core identity, than than the probable reason an Autistic woman would do this – they don’t feel accepted so adapt to be accepted by whichever peer group will have them. So while the misdiagnosis of Autistic women with borderline personality disorder is understandable, it is also incredibly unhelpful. Mental health clinicians need a better understanding of Autism to avoid this misdiagnosis occurring.

While I say that  diagnostic labels are either for the  purpose of your own identity and accessing services, this is only the case for the person who has the diagnostic labels. For the rest of the world, those labels can carry a lot of weight. Having an inappropriate psychiatric ‘label’ can lead to a lot of misery and mistreatment.

The right label – or as close as possible to it – is very important for Autistic people and / or people with mental illness generally.

My parting  thought will be a reflection on a conversation I had in hospital a few years back, with a psychiatric nurse. The nurse told me about the psychiatrist in the USA who wrote the very first Diagnostic and Statistical Manual of Mental Health Disorders, back when being gay was in there as a mental illness, among other things that really didn’t belong.  The author of the first DSM was also a botanist. The reason he wrote the DSM – the manual including  all the mental illnesses – was that he thought it would be nice if human beings with mental illnesses could be categorised in a similar way to plants and trees. So the very nature of psychiatric diagnosis is essentially the result of a doctor who essentially thought I was the same sort of thing as a monkey puzzle tree, or a hydrangea bush. Psychiatric diagnosis  is  essentially a best guess based on an observation. The labels  – while they can be very useful when applied  competently – are just a way of grouping together individuals with similar experience. There are still around 7 billion individual human brains out there, all of them different. Make use of your labels and put them to good effect but remember that the fact you are you is probably the most important bit.

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No empathy or no information? Autism and empathy

It is just after 7 pm on Autism Day (the United Nations one on 2 April). I have attended two events today, one a Yellow ladybugs art event for girls and teens on the Autism spectrum and their parents / grandparents / carers and the other a panel of clinicians which I chaired. I was very glad to be included in the panel discussion but it was quite challenging. I was the only Autistic voice on the panel and some of the clinicians held views I disagree with and / or find unhelpful. I am giving myself a metaphorical pat on the back for this one as I feel my chairing was positive and professional and I asserted the Neurodiversity / different not less / nothing about us without us sort of perspective quite well.

After the event I spoke to several of the audience members – many of whom were buying my books. One of the staff from Marymead who organised the event drove me home and I got talking to her and one of the clinicians, a psychologist just as I was leaving. We were talking about Autism and empathy (‘groan!’ I hear from lots of the readers). But the discussion was good as, among other things, I had a bit of an epiphany.

The thought I had has almost certainly occurred to someone other than me in the past. In fact I think Dr Wenn Lawson has a similar take but from a professional perspective.  Wenn is one of my role models and an amazing advocate for Autistic people the world over so I hope I don’t step on his toes in any way. I am not a clinician, I have no medical or psychology training but this was my thought on empathy which I certainly hadn’t understood before but which I think is worth sharing with all of you in blog reader land.

Autistic people are frequently told we don’t have empathy but most often we do. I think the issue is often one of receiving information. Imagine that Autistic people tend to struggle with decoding facial expressions and body language but non-autistic people generally do not. Imagine a non-autistic person sees their mum and she is scared or sad or happy but she shows those things only via her unspoken language – through her eyes, facial expression and body language. The non-autistic person would see their mother and probably understand she is experiencing whichever emotion and respond accordingly. Now replace the non-autistic person with their Autistic sister or brother. The Autistic person most likely does not see or understand the non-verbal cues. When they don’t respond in the way a non-autistic person would, they are told they lack empathy (insert ABA here presumably). But I don’t think this view is necessarily correct. The Autistic  person lacks the ability to pick up on non-verbal cues and KNOW their mother is experiencing an emotion. If their mother says to them ‘I am really sad because of…’ and they understand the verbal description they will probably respond with empathy and caring in their way.

So Autistic people are being painted as lacking empathy because they don’t respond to something they probably cannot see, understand or even be aware of – body language and facial expressions. I have heard a few clinicians and other professionals who work with Autistic people comment that they ‘lack empathy’ but they are also ‘very thoughtful.’ This is an apparent contradiction but I imagine the Autistic person in question may be thoughtful most or all of  the time, it’s just they are unaware of what the person they are with is feeling unless it is stated. It is like someone saying an instruction in Italian to someone who doesn’t speak Italian – they are not being thoughtless, they just don’t understand the communication.

Given that Autistic people often have alexithymia (emotion blindness) they may not understand when someone says they are experiencing sadness or anger  – or particularly more subtle emotions. This can once again result in the label of lacking empathy but is essentially resulting from gaps in the information that the Autistic person needs to understand what the other person is feeling.

I often talk about my own experience of cognitive empathy. That is, I can’t somehow emotionally pick up on what others are feeling but if they tell me or I have experienced a similar thing, I have a lot of caring and empathy. I think a lot of other Autistic people are similar to this. I made a conscious decision to be more caring and engaged wiht people when I was younger so I spent many years working out what different situations did to people’s emotional states and what worked best in response to that. In fact when I have taken EQ tests, my EQ (Emotional Intelligence Quotient) is off the scale. I think this is because I put my mind to building my emotional connectedness, so even though I have no idea what someone’s facial expressions are telling me and can’t feel many emotions myself, I have built a parallel set of emotional intelligence based almost entirely on thinking rather than feeling. As I often say in my talks ‘do what works!’

It is a bit much to accuse Autistic people of being cold-hearted and lacking in care if the information everyone else uses to build their own empathy is not available to us. Cognitive empathy is just as valid as the more typical emotional empathy. There is also intuitive or hyper-empathy which some Autistic people experience and which means they can pick up on feelings in people without seeing or speaking to them. Once again this tends to be misunderstood or dismissed.

Yup, as I so often end my blog posts, we are most certainly different not less.

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