Respecting difference: Autistic people aren’t ‘speaking neurotypical’

In the course of a presentation today I did something I have never done before – I spoke to a former ABA therapist. MY heart sank as she eagerly said ‘What do you think about ABA?’ For anyone who hasn’t come across it before, ABA or Applied Behaviour Analysis is an intervention used on autistic kids. It is essentially premised on making children ‘less autistic’ and uses a system of rewards and in many cases punishments to promote compliance. Almost every autistic advocate you will meet will say how damaging ABA is, doing things like forcing kids to make eye contact and coming from the premise that autistic reality is ‘wrong’ and in need of fixing. There is growing evidence as autistics who were subjected to ABA as kids grow older, that it causes trauma. ABA pretty much stands against everything I believe in and strive for. So being confronted with this enthusiastic young person was a little tricky to say the least! I was speaking with her before my presentation began and managed to explain my significant worries about ABA and the ethos driving it. She seemed very receptive to what I said. However throughout my talk she kept offering ‘pearls of wisdom’ based in her former career, which actually  gave me a wonderful opportunity to talk about ideas of neurodiversity and the critical need for autistic people to have a positive autistic self-identity.

One thing the former ABA therapist said was that she used to do a lot of ‘work’ with cards showing emotions. I reflected that this is an approach to autism based very strongly in neurotypical experience and understanding. If you show me an emoticon, unless it is the happy, crying or angry face I have no idea what it means. Showing autistic kids pictures of cartoon faces displaying ‘emotions’ and expecting them to relate it their understanding of sadness or anger? That is never going to work! It’s like conducting an exam in a language the student is only vaguely aware of and doesn’t know any words of.

That exchange got me thinking about how a lack of understanding autistics’ experience of life and how we communicate can lead to some assumptions  which not only make our own lives hard but also colour the attitudes toward autism in the wider world. There is a long-standing myth which persists that autistic people lack empathy and even the capacity for empathy.  This was sold to us all as an evidence-based researched opinion….but I suspect the researcher in question was looking at the wrong things. An assumption about my capacity for empathy is something that happens relatively frequently: I will be talking to a person and I get a sense that I must be doing something ‘wrong’ and then after a while of conversation I realise the person I am speaking with is upset. When I know they are upset I immediately offer support and kindness and hope they feel better soon. The reason for my apparent lack of care was simply that I wasn’t picking up on their non-verbal cues. I c an only tell someone;’s non0-verbal cues if they are really noticeable. A neurotypical person might notice the person was upset a long time before me and thus they may seem to be more ‘caring‘ while I am seen as a ‘bit off.’ The difference between the neurotypical person and me is that I don’t notice or understand a number of communication cues that neurotypical people are more aware of: facial expressions and other non-verbal communication. I care just but I am not receiving the same information to alert me that the person is upset. Unless people understand that difference in the information that autistic people are receiving, it is maybe understandable why someone might think us uncaring. Once again, it is like the exam conducted in a language the student doesn’t speak.

Empathy is an odd thing because I have observed that while autistics aren’t always right in there with the caring response, when talking to a number of  neurotypical people, I have experienced a complete lack of empathy for me and my autistic experience. I often get a response along the lines of ’your’e weird so I don’t really want to get involved in whatever issue you are having. Just go away and don’t bother me.’ So while I will be agonising as to whether i have been caring and respectful, a representative of the group who are thought to have the empathy thing down pat has just demonstrated the complete opposite! I suppose people choose whether or not to display empathy and not everyone is caring.

I find it easy too see things from a divergent viewpoint but I imagine that probably isn’t the case for people who have never seen life from a divergent perspective. It is really important for us divergent folks to advocate and represent, even if it is just to state that there are so many ways of expericening the world and the people in it and these are generally OK and perfectly valid. 

And the former ABA therapist asked me to come back and do more work with the organisation I was speaking to which I was really happy about. There is that fine line of feeling the need to speak to people who are completely on the same page and it gets challenged quite often in my work. It was hard talking – and very hard talking civilly to someone who represented something so problematic but in fact I genuinely believe I changed some thinking today. It is so important for autistic people to be understood as a different culture with different ‘language’ and experience and not broken versions of their neurotypical peers in need of fixing. Our ‘language’ is as valid as any other ‘language’ and the more people know this the better the world will be for autistic people and those who work with us. 

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Autism and criminal justice: Beyond myths, stereotypes and denial

I need to preface this piece by saying I have possibly a rather different view on issues around criminal justice than many people do. Criminal justice issues are always going to be complicated and nuanced. Criminal behaviour is both an individual choice and a social issue. 

I have the perspective as an autistic person who many years ago was victimised and also was a perpetrator. I will say that my offending was definitely NOT because I am autistic although I was taken advantage of by a criminal man who was a predator and this was my initial introduction to the criminal justice system and things just sort of got worse from there.  Since 2000 I made a lot of changes in my life to be where I am now but it was  hard start.

I met Polly Samuel who I knew then as Donna Williams in 2004. My autism diagnosis was then ten years old. It wasn’t long after I met Polly that she told me she thought that I should write my life story. The reason I stopped objecting and wrote Finding a Different Kind of Normal was this: Polly told me that she spoke at parent groups and there were often parents who would sit right up the back and leave before the socialising and cup of tea at the end of the meeting. Polly told me these were the parents of autistic young people caught up in the criminal justice system and they felt ashamed and excluded and if I wrote the book it would be for that group of parents and their kids. It took me a few minutes to realise that this would include my parents too. I finished writing it in four weeks and editing it in two more. I guess I had something of an incentive!

As Polly demonstrated, criminal justice system involvement is something of a taboo with most people and seems to be even more so in the autism community. I suspect this is probably due to a very big issue which persists today – that of stereotyping and using myths about autism to justify blaming criminal behaviour on autism itself. By implication, we are all emotionless, cruel monsters who don’t know right from wrong. The  idea of autistic people ‘not knowing right from wrong’ is pervasive in this space and is particularly damaging…and totally false I might add. If not knowing right from wrong was part of autism presumably we would all be in prison! Another harmful myth is around us apparently lacking empathy. This myth has done so much damage across a number of domains and is a pet hate of mine. It seems to have started from some quite flawed research but has since taken hold in wider society. In actual fact autistic people are generally very high in empathy but we tend to experience and express it differently to neurotypical people which for people looking for things ‘wrong’ with us presumably provides something of a justification.

In some instances, including a notable recent case in Victoria, Australia, autism has been presented by media outlets as an actual reason for offending behaviour, which is not only incorrect, it is also adding fuel to the fire of people who would hate and revile autistics and it adds considerably to stigma individual autistics face in the world.

Some people in the community are so horrified by these myths around autism and criminal intent playing out that they deny that any autistic person commits criminal acts. Sadly that is not the case either. Autistic people can and do commit crimes for a range of reasons. Some of these reasons relate to us being exploited, manipulated or taken advantage of by others with genuine criminal intent. There are other similar issues – autistic people being desperate to win approval of peers or a partner, which was what put my on my own very shameful path. In other cases autistic people can be accused and even convicted of crimes which were not committed with any intent but were misinterpreted. The movie I am Khan has an example of this – and is an excellent and very moving film too! Sometimes criminal acts are committed by autistic people who have been mercilessly and continually bullied and victimised and retaliate. Autistic people also commit crimes for the same kinds of reasons other people do. It is a small minority of autistics who become caught up in the justice system but it does happen, as I am living proof of I suppose!

As you are reading my blog I imagine you have some idea of who I am and what work I do in the Autism community. I am one of those people who was swept under the rug. I was a person with huge issues around  offending behaviour yet now I am seen as a role model and a community leader. We are responsible for each act we make. 

Stereotyping and demonising autistic people is not going to address anything in the justice space or anywhere else for that matter – it will not reduce offending behaviour. What it will do is generate more prejudice and stigma. It will almost certainly confuse judicial staff, corrections staff and police. This is a huge issue as many employees in the justice system could really benefit from accurate, sensible autism training and knowledge. First responders particularly need better autism knowledge and disability knowledge more broadly as a matter of safety. And way beyond the justice system, these sorts of stigma and myths will contribute to autistic people being demonised and victimised across the board. I say no myths and no taboos – both are damaging. Let’s just help support people and work to ensure the world is a safer and more inclusive and respectful place.

 

Your past meme

A parent’s guide to autistic pride

A good friend who is a non-autistic parent of autistic kids asked autistic people to write out some thoughts for parents in relation to Autistic Pride Day on 18 June. I thought this was a good thing to do. My responses to her questions have been adapted into this post. As an autistic advocate of over 13 years’ experience I have seen a lot of changes in the autism world. When I started out in 2005 a lot of parents were very heavily focussed on the negatives around autism and would express – often in front of their kids – about what a burden it was to have an autistic child. Thankfully this has become a much rarer occurrence but there are still some misgivings which can occur between autistic advocates and non-autistic parents. I think connecting with parents – and particularly non-autistic ones – is really important. The biggest influence on a child’s life more often than not is their parent/s. Autistic pride is a really important topic for all families with one or more autistic members and probably more broadly in society, so I thought I would write this post. I hope you find it helpful. 

Autistic pride is premised on the notion that autistic people are valuable, worthy and an important part of human society as they are as autistic people. This does not mean they will not experience difficulties with some areas of life or that they don’t need support but it does mean recognising and fostering their strengths, talents and interests and supporting them to like and value themselves.  

Despite there being a lot more awareness and understanding of autism in recent years, we are still discriminated against. This is demonstrated in a number of settings from the still appallingly high rates of bullying of autistic kids in schools to the very low employment participation rates and low educational attainment statistics.

Autistic pride is a great way to counter this. If a person is genuinely proud of who they are and sees their autism in a positive light, as part of their character and personality, it helps them to navigate the world better. This is relevant for all autistic people – those who use verbal speech and those that don’t, those with all cognitive abilities and accomplishments and those with any additional ‘labels’ as well as autism. It is a quality that parents can play a huge part in fostering and supporting.

Pride feeds into a bunch of very useful attributes like self-esteem, self-confidence, resilience and independence. Even better, it allows us to value ourselves in the face of a world that often does not respect or value us and to educate others and advocate for other autistic people too. Someone who is filled with a sense of pride and self-respect is more likely to navigate life well, be fulfilled in life and achieve their potential. Without that sense of pride and given all the barriers stacked against us, it can be very hard to be who we want and need to be. Pride is great at helping to level the playing field for autistic people. It is one of those qualities which is pretty much always a good thing. The example that a person who is proud of who they are sets for others is fantastic and it also demonstrates a model of viewing autism through the lens of pride. This will almost certainty impact on neurotypical people and change their understanding of autism for the better.

What positive, proactive things can parents and other adults in an autistic young person’s life do to help foster that sense of pride?

There are a bunch of messages and actions non-autistic parents, and other adults can do to promote and foster a sense of pride in autistic kids and young people. These include:

  • Understanding that autism is a different wiring of the brain and not due to a deficient or ‘broken’ brain. 
  • Understanding that autistic communication is as valuable and effective as non-autistic communication – just put a roomful of autistic people together and take notice of how they don’t have the kind of miscommunications as they might when communicating with non-autistic people. Viewing communication this way and having a sense of needing to learn to ‘speak autistic’ is a key part of understanding autistic young people and fostering a sense of pride.
  • Reading and viewing work by other autistic people – there are advocates who are children as well as adults and they often have some very useful strategies and understanding too. 
  • Make sure your child has access to autistic people as possible friends and also adult role models and mentors where appropriate. Adult autistics can be great translators and interpreters for kids and kids interacting with autistic adult role models is a very powerful way to build their self esteem and sense of pride.
  • Don’t punish a child for ‘autistic’ activities like stimming. And don’t fixate on or insist on eye contact, or on things perceived as ‘poor social skills’ that are just a bit different (e.g. parallel play at later ages than that at which after neurotypical kids might stop doing it). 
  • Encourage kids. Take an interest in their interests. Challenge and stretch them within their capacity so they will be proud of themselves for overcoming challenges. 

Thoughts on some ‘therapies’ to avoid

  • Parents of autistic kids, especially newly-diagnosed kids, want answers and want to help their child in whatever way they can. This is of course completely understandable but it is important to be aware there are lots of charlatans peddling pseudoscience ‘cures’ and ‘treatment’. Often these view  autism as an ‘epidemic’ or something that a person can recover from. If any individual or company talks about ‘cures’ and ‘recovery’ it is a good idea to avoid these at all cost. They won’t help your child and they will probably do more harm than good.
  • At the same time, beware of ‘evidence based’ therapies that are centred around compliance. This includes things like Applied Behaviour Analysis (ABA).
  • It is very rare indeed for a parent to intentionally do something harmful to their child. Unfortunately some ‘therapies’ which are marketed as being helpful and enabling your child to get along better in the non-autistic world but are in fact focussed on conditioning your child to act ‘less autistic’ (including ABA). This alone can have a huge negative impact on how your child views themselves.
  • This sort of ‘therapy’ does not support autistic children to develop into happy, fulfilled autistic adults. Instead it works to forcibly make a child seem less autistic. We don’t need to make autistic children try to look less autistic! We need to support them to be themselves and if anyone has an issue with their stimming – or whatever – well that person needs to be educated. There are a lot of documented cases of trauma in autistic adults who went through ABA as kids. I am certain their parents did not intentionally subject them to this knowing it would cause trauma. It would most likely have been promoted to those parents as a therapy to make their child somehow ‘better.’ Sadly this kind of thing rewards kids for doing often very stressful and unpleasant things like eye contact. It can also remove some of the child’s effective coping mechanisms. For example stimming is used by many autistic kids as a means to self regulate and address stress. You can imagine the impact that removing that one strategy  might have on a child.
  • These kinds of ‘therapies’ do not help kids to develop pride and value in themselves. In fact they could be seen as representing the enemy or antithesis of autistic pride.

I speak with parents every day and have given countless presentations to parent groups but I am n to a parent myself and my perspective in this piece is that of an autistic adult who has only relatively recently developed a sense of pride in who I am as an autistic person. If I had that sense of self-worth and pride as a kid going through all the horrors I did, I know it would have made a huge difference. Pride is a gift you can support your child to attain. 

Thank you 🙂

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Online groups – unpacking some of the difficulties

Lately I have had a few messages from autistic people who want to get involved in advocacy but are afraid to. They perceive a lot of the online groups as being unwelcoming and fear they will be attacked or unfriended for expressing an opinion different to that of the group. This is not a good thing and something I felt I should have a think about. Some members of our community apparently excluding other members of our community doesn’t sound like a good thing at all. A little consideration made me realise that this is a very complex issue indeed. In this post I’m going to have a go at unpacking some of the issues and suggesting a few things which might help.

Debate and discussion: friend or foe?

Opinions ands approaches differ between people. In principle this is a good thing and robust, respectful discussion should be encouraged. Some people really enjoy a good online debate and find it helps them to refine their own thinking and understand others’ perspectives. I am one of these people. If we have a respectful discussion I can learn some really useful things and different perspectives but I won’t learn anywhere near as much from just getting affirmation and praise. However, when I was younger I was terrified of anything which might be described as a disagreement or conflict and took it very personally. Everyone is at a different point on their own journey and has different views. So where a robust discussion is enjoyable for someone who enjoys debate, someone who is anxious around disagreement will probably find robust discussions very challenging and feel attacked. Different preferences in this area can mean that one person will find an online group stimulating and invigorating and another person will find it very challenging.

Some groups can come across as quite purist. If a member expresses a dissenting opinion  it can be pounced upon. There is nothing ‘wrong’ with these sorts of groups per se and they can serve a useful purpose but if that is the first group a person trying to find their way in the in the autistic community comes across it can have a negative impact, especially if the new person expresses a dissenting opinion.

Where is the ‘line’?

Some things are absolutely right or absolutely wrong. A person coming onto my page and expressing anti-vax opinions and promoting those views to my online friends will not be on my page for long! However, some things I see more as grey areas. Issues around how a person identifies are a grey area to my mind and need to be determined by the individual themselves. But for some people and groups, how a person identifies (eg ‘I am autistic’ or ‘I am a person with autism’) ARE part of that not negotiables list. I draw the line in a different place to others and we all do. Understanding that is really important. Your line and the group’s line may be different on various things. 

Some disagreements in groups are not meant to be upsetting or invalidating but some people can experience them as such. For a person who dislikes disagreement, some of those sorts of discussions are very distressing and they can feel afraid to contribute to discussion. Others involved in the discussion may not be aware that this is the impact.

Just say no: problematic groups 

There is the issue where some groups are in fact genuinely problematic. These can result in people being shamed or unfriended for expressing a dissenting but not harmful view or hounded in group conversations.  Some of these groups quite forcefully assert a sort of ‘preaching  to the choir’ sort of thinking. I see these as being quite ideological which is not my approach to life. I don’t really want to get involved in these kinds of discussions so I usually just leave those groups. My rule of thumb its that if I feel frightened about posting something then that group is probably not one I want to remain engaged with.

Some thoughts on interacting with online autism advocacy and empowerment groups 

  • Online groups offer an amazing opportunity to connect with other autistics and to effect change on a variety of levels.
  • Each group has a different purpose and ‘flavour’. Have a look around and try to find a group which is more closely aligned to your interests, likes and experiences.
  • People perceive things differently and what might be experienced as an attack by one person may not be intended that way.
  • If someone unfriends you because you express a dissenting opinion, I wouldn’t worry too much as you probably don’t want that person on your social media anyway!
  • Most people in the various groups are autistic people themselves with their own set of experiences and challenges. They are probably not intentionally trying to make your life hard. A discussion with a group admin if you have concerns can help to defuse any tension a lot of the time, even if it seems hard to do. 
  • If you are a group admin, think about how your group can support people just entering your online community, if you haven’t done so already
  • Social media groups are supposed to be empowering and supportive not divisive and exclusionary. If you are in a group which you find problematic or toxic or that you are not getting anything positive from, my advice would be to just leave.

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No more ‘so what’ – How autistic passions can change the world

I was on a number of flights earlier this week. One of them was the Regional Express flight from Adelaide to Port Lincoln. The plane seated about 20 people. There was only one flight attendant – a man in his early thirties who evidently loved his job. He was friendly, courteous and professional. As someone who loves their work, I could feel a strong affinity with this man and his care and diligence. Reflecting on this I imagined that no careers teacher anywhere has ever said “If you work really hard and apply yourself you can be the flight attendant on the Adelaide to Pert Lincoln flight’. We are conditioned to value high powered professions with a lot of responsibility or prestige. When I was a high academic achiever at high school my teachers told me I could study law or medicine. At the time I couldn’t think of anything more awful and instead elected to study Fine Art. 

This concept of one job or skill being more or less important than another is pervasive. It goes throughout our society. Even I do it sometimes! Autistic people often have skills which are prodigious but attitudes around autism condemn them to what I once saw described as ‘so what’ skills. That description came from the mother of an autistic adult who had what would probably be described as savant capabilities around  calculation and mathematics. Because this man could not impress employers at a job interview and was not geared for working in an office, his incredible skills went largely unnoticed and were seen as a mere curiosity.

Autistic people often possess high level skills and sadly they are often missed by anyone who might benefit from these skills. I should state that employment is not the only route to fulfilment and if some one does not hold a job that doesn’t really say much about their character, especially for people who may have little interest in employment. However, if people want to work or share their skills in another way they really should be encouraged to and be able to do so. I know so many autistic adults who want to work and are unable to due to a variety of reasons. 

I gave a presentation at an event on Thursday and Dr Wenn Lawson was one of the other speakers. Wenn talked about the interests and passions of autistic people. He said what does it matter if someone loves a particular online game or air conditioners or whatever. Why are we told those things are not helpful? They are helpful for the person so why should anyone else care?

Our passions and interests are so often seen as a waste of time and an obsession. Our skills tend to not be viewed as something with a great possibility, both to us and to the broader world. My passionate interests are cats (since age 0) and autism advocacy (since 2012). I have had a number of very happy and self-actualised kitties and my expertise in autism is utilised by people and organisations all over the world. If I am required to provide my qualifications or background in autism there is no conventional thing I can pinpoint yet I have a nuanced understanding of autism which people tell me helps them a lot. My expertise comes from a range of things: My own experiences, thousands of conversations with autistic people and their family members, partners, service providers, teachers and policy-makers. I store information from all those conversations and they inform what I think and say. I do not generally read a lot about autism other than blogs and news articles, I don’t attend conferences that I’m not speaking at, which suggests that my expertise is mostly formed by my own and others’ personal lived experience. I am an example of an autistic person whose passionate interest has been picked up by others and seen as very valuable. So why don’t many other autistic people have this kind or experience? 

A well-known autistic commentator said recently that autistic people who are unemployed should basically ‘get off their butt and get a job!” This statement was almost the opposite to the way I understand unemployment and autism. Autistic people have struggled with employment for a very long time but I see that most of it is related to factors outside of their actual capability to do the job. Not only do autistic people often possess prodigious skills in useful areas but we tend to have some very handy soft skills such as a work ethic, loyalty, honesty and determination. If we are unemployed it is very rarely because we are being lazy and if we are alienated and disengaged it tends to come from outside factors influencing our motivations and self-confidence rather than an inherent laziness. I have worked in the area of autism and employment for several years and almost every autistic person I speak to says they want a job or to work more hours. 

In recent years in Australia and some other countries there have been organisations marketing autistic  talent in supporting employers to employ autistics and to support autistic employees to work. Most of these organisations are in the corporate sector and in IT but not all of them are in those sectors. I think it is great to see this and I long to see more of it as it is only really a handful of positions filled by autistic staff at this point. The principles some of these organisations such as the Dandelion Program and Specialisterne align quite well with my own. However I want society to change how we view autistic talent and skills so that out is no longer a talking point that an autistic someone got a job but is just business as usual. 

We need to work on changing attitudes so nobody thinks an autistic person’s talents and interests are ‘so what’ skills with no benefit to the autistic person whose skills they are or to anyone else. This thinking goes right to the heart of the difficulties we experience as autistic people: where our interests and passions are called obsessions, where the assumptions  about young people’s futures are all negative and filled with a belief that the person will fail or won’t manage at anything because they don’t ‘fit in.’ Gee, I am seen on occasion wearing cat ears on the bus with my suit! I definitely don’t fit in, but I am fulfilled in my career because my value is recognised. The deficits model of autism is taking us away from living our potential and following our passions. 

I have a meme – pictured here – which I often send to autistic young people and it simply said this: ‘Your passions can change the world.’ Let’s work for a world where we not told ‘so what!’ when we do something amazing but ‘How do you want to use that skill because its awesome!’

Your pur passion will change the world