Thoughts on ‘meltdowns’

One of my Facebook family asked me to write this and I wondered why I have never written on this topic before given it can be such a huge challenge. The issue, for want of a better word, is ‘meltdowns.’ And if people have a better and less alarmist name for it please let me know.

What is a ‘meltdown?’ My understanding  is that it is the result of an overland of information, sensory and social input and  / or emotions. A person can only experience so much overload before it takes hold and they express it in a way which can be distressing for people – and it is often most distressing for the person having the ‘meltdown’. I am yet to meet an autistic person who feels OK about meltdowns. When we have one we regret it and really don’t want to have another one. We often worry about loss of reputation because meltdowns are poorly understood, even by those who work with autistic people. Wider society has some very dark views about ‘meltdowns’.

A ‘meltdown’ is basically what happens when there is too much difficult or stressful input coming in and not enough time or opportunity to deescalate the issues before they come to a head. A meltdown is not the fault of the person having it. It is not intentional poor behaviour and it is not a ‘tantrum’ designed to get attention or force a decision. Generally autistic people are not intentionally manipulative, even if some people  believe that our behaviour is manipulation.

For me, when I have one I became very stressed and emotional, paranoid at friends I usually like and angry. It is almost impossible to control how I respond to the overload once I am in that state. Thankfully I tend to only have meltdowns when I am around people that understand me so it is easier to work through afterwards. On one occasion I had one at work which was very challenging. Even though I am an autistic advocate so am usually articulate when speaking of such things, I wound it very hard to explain what had happened and felt quite guilty.

When I was a kid I had meltdowns on occasion. This was in the early 1980s so the understanding of autism was pretty much zero. I wouldn’t gain a diagnosis until 1994. When I had a meltdown it was viewed as me being pushy or difficult. So I decided not to have them. This might sound like a positive thing but it really wasn’t. Over the six years I was in high school I squashed down my overload, so the metaphorical ‘tank’ just got more and more crammed with stress and I didn’t release it. I was bullied badly all through high school but I kept my metaphorical emotional drill sergeant on patrol  and didn’t let anything out. If any of you have read my autobiography about the hell I went through in my twenties you will get an idea of what that approach did to me. When I finally released the pressure it basically propelled me into several years of chaos. I cannot speak for others but this does make me think that if the level of overload is there, suppressing it may not be a good idea.

‘Meltdowns’ are one of those areas where autistic people can be viewed as ‘other’ and distant form the rest of the humans. I den’t think that is the case at all. I think autistics feel, see and experience things on a  very heightened level a lot of the time. Our senses are often highly tuned, our thinking is often at a heightened level, we tend to worry and ‘overthink’. Put someone experiencing that into a world where they might be mistreated, ostracised and bullied, where things don’t always make a lot of sense and where we are not respected or listened to…well it’s no wonder the overload can turn into something like ‘meltdown’.

What is the solution? I know a lot of autistic people who are terrified of having meltdowns in public or at work or school, and with good reason. Meltdown is not well understood by most people it seems. I even attended an autism event once where the wife of an autistic man gave a presentation about his meltdowns and talked about him like he was an errant child! In practical, immediate terms, learning your triggers and some deescalation strategies can really help. More broadly, if people understood the reasons for a meltdown, if people understood autistic experience better and were more understanding and respectful, I think the issue would be less challenging for us. If we lived in a genuinely ‘autism-friendly’ world, there would be more of a chance to avoid or deescalate overload before it got to the critical point. And if we knew that people would understand meltdown better and the reasons for it and not judge us then even if we had one at work or at school or in public it wouldn’t be such a mortifying moment because – as I do when I have meltdown in front of friends I trust –  people would understand and not judge so much. Yep, neurodiversity can do a  lot of good stuff. Let’s just make a more respectful world where people understand us.

a 'meltdown' is not a tantrum. it is a sort or release valve in response to overload. it is not intentional and requires support not punishment.

Unsolicited medical advice? No thank you!

I am not a fan of unsolicited, persuasive health advice from, well anyone really.  I am an autistic person who has a diagnosis of atypical schizophrenia. I have spent many years accessing health services and on more occasions than I care to count have been misdiagnosed, misrepresented and mistreated.

My mental illness is apparently unusual in presentation plus I am autistic which combines to make accessing diagnostic services from mental health clinicians very fraught and stressful. Like many other neurodiverse people my autism diagnosis is hard fought and won. It represents a major part of my identity, more so than almost anything else. My gender identity is also a pretty big factor in how I view myself. Mental health is less important when I am formulating my sense of who I am although it definitely plays a part. 

Since I accepted my autism diagnosis in 2002, I have had several admissions to the psychiatric ward for mental health issues. Each time I have been terrified that a doctor would cancel my autism diagnosis. I remember a psychiatrist during one admission flippantly saying he thought I was ’too cool to be autistic.’ This resulted in some stress and panic from me. I said to him desperately ‘But I write books about autism! you can’t take that from me.’ If that psychiatrist  had un-diagnosed me it would have had a huge impact on my sense of who I am. At quite a late age I found my autistic ‘tribe’ and started learning who I am as an autistic person. Losing that would be a grief akin to losing a person I love. I’m fairly certain it wouldn’t help my mental health all that much either. This seems to be a common way of seeing things among my neurodiverse peers. Sadly it seems to be just as common for clinicians to have little understanding of the impact of such pronouncements and comments on those they are tasked to care for. Accessing help can be a minefield of stress and confusion about diagnosis and identity as a result. In the past I have put off accessing help even though I needed it for fear of having to go through drama about my diagnoses.

Even without doctors misdiagnosing and missing people, there is a whole population of people who will happily dispense healthcare and diagnostic advice apparently from the basis of little or no knowledge of what they are passing comment on! These range from people who don’t have a lot of knowledge but make up for it with a  wealth of opinion telling autistic people and parents of autistic kids all the reasons the diagnosis is ‘wrong’. It can come from friends dishing out diagnostic and health advice from what they think is a place of care. But for someone who has fought for many years to gain the appropriate diagnostic descriptors being told by a friend that your experience is actually ‘wrong’ can be stressful and triggering.

Problematic health advice goes beyond diagnosis. Medication is another area where many people have strong opinions, and I don’t just mean the most obvious group – dangerous anti-vax charlatans. I blocked an autism world colleague a while back because he told me to stop taking the medications I take for schizophrenia and to meditate instead. Now I’m as much a fan of mindfulness as the next person but I know from experience if I stop taking my meds, all the mindfulness in the world isn’t going to help! This advice was actually dangerous. Had I followed it I would be very unwell – risking my reputation and potentially my life. Not such helpful advice regardless of whether the person giving it thought they were helping! I felt this person had quite a dangerous attitude based presumably in ignorance.

I think a lot of the issues happen where people think they are helping but don’t know much about the person or their situation.  Both health professionals and laypersons can be guilty of this. Giving out this kind of advice meeds to be done with a willingness to listen and understand and without ego. I am often asked to provide advice and the first thing I think is about the responsibility which comes with that and how whatever I say needs to be helpful to the person and respectful of their circumstances and who they are. I feel like a lot of people dishing out advice could benefit from adopting a similar approach. Flippant statements can be devastating.

Some tips:

  • People generally don’t enjoy being given unsolicited health advice. Giving unsolicited health advice doesn’t provide a lot of benefit to people.
  • It can be dangerous to give some advice to people (e.g. ‘don’t take your meds’ etc.)
  • Assertiveness is a good skill if you are on the receiving end of this kind of thing. Explain your concern, why it is an issue and give the other person the opportunity to revise their statement  / apologise 
  • Autism and other neurodivergences are frequently a strong part of a person’s identity which means statements questioning diagnosis etc can be very hurtful and unhelpful.
  • The impact of statements on things like diagnoses and treatments can be much more significant than the person making the statement thinks.


Show me the money! Autistic speakers and speaking gigs 

I recently posted on social media about how I feel people delivering a service as a public speaker should be paid for it, regardless of whether the person is autistic or allistic. I understand that there are a number of considerations around being paid and maybe it isn’t always as simple as ‘pay me,’ so I thought a post unpacking some of the issues was in order. 

In some instances there is a really clear case of injustice and exploitation. I remember being invited to speak at a conference some years ago. When I asked about my fee the organisation said they couldn’t pay, so I asked about having my flights and accommodation paid for and they apologised once more before telling me that the non-autistic expert speaker was charging several thousand dollars for their appearance and they had no money to pay other, autistic speakers. Needless to say I have not spoken for that organisation then or since! 

Sadly this is not an isolated incident. There are still some organisations who can pay but seem to not want to actually part with cash for one of us to speak for them. For people who experience a lot of discrimination and ableism, this kind of thing is enough to put anyone off public speaking.

Some organisations will say that they won’t pay and that they are doing you a favour by booking you as a speaker. I have been told ‘it will look good on your CV’ many times. Currently my autism world full CV is 22 pages so I am inclined to ask them which page I should put their exciting opportunity on? However most speakers do not have a 22 page CV or many years of experience at speaking and a sense of their worth as speakers. This often means that they lack confidence to negotiate for a fee or to have their expenses paid. It often means that they will feel honoured to speak and that they may well think it is worth doing in order to look good on their CV. Many newer speakers have not considered what to charge even if they are offered payment. Giving a presentation is in fact an exciting thing to do and quite an honour so it is understandable that many people will do it for nothing but in many instances that is not really OK.

Some aspects of this which I consider to be not negotiable:

  • If allistic / non-autistic speakers are being paid, autistic speakers should also be paid and the rates should be consistent between both groups 
  • If a speaker is invited to speak at an event, even if budget doesn’t allow for fees for speakers, they should not be out of pocket for attending – so travel etc needs to be paid for as a condition of the arrangement
  • The expertise of autistic speakers is valuable and needs to be considered a key part of the event. Autistic speakers should not be tokens or treated as the ‘colour and light’ 

There is another issue at play which involves organisations which actually are respectful and inclusive but which are small and lack funds. They may offer a smaller fee or ask to negotiate. I see a big difference between those organisations and, for example the conference organiser not wanting to pay me due to using all their money to pay the non-autistic expert. There can be a lot of confusion in this space as there are no hard and fast rules as to which organisations genuinely can’t afford to pay speakers much and those who are just pretending and trying to cut costs.

I have a few strategies around issues of fees and speaking:

  • I have a set fee structure. It is a PDF document on my laptop. I based this on what I was aware of other professional speakers charging and what I thought organisations would be OK to pay. My fee structure includes all the incidentals I will charge for (flights, ground transport and accommodation), as well as my fee for presentations of a range of durations (from an hour or less to all day). I also added a rate for consultancy work.
  • I have an Australian Business Number (ABN) and I would recommend if you want to do regular public speaking that you should get one or the equivalent in whatever country your are in
  • When an organisation asks to book me, I will send my fee structure. If the organisation is:
    • Run by autistics
    • Run by parents
    • A school, scout group or other organisation which doesn’t have a big budget for presentations 
    • or if they are another kind of small organisation providing a community service …

I will say that my fee is negotiable. However, I send the fee structure anyway as it is a statement that I need to be fairly remunerated for my time, just like any other speaker should be. 

  • If an organisation such as those listed above cannot pay me I will consider whether or not I will give the talk anyway. Flexibility is important here because it is not always the case that those who won’t pay are intentionally exploiting me. Sometimes they really don’t have the funds. If my message can help the audience I will often donate my time. I think this is a very different situation to an organisation exploiting me but once again there can be some grey areas here.
  • This stuff can tie your brain in knots and is full of unwritten rules and rules of thumb – i.e. stressful for a lot of autistics who prefer actual rules and clear statements. I generally find my gut response is the one to go with.
  • It is important to keep in mind the reason I have a fee structure. It is not so that I make a lot of money. Rather, it exists because I wouldn’t want other autistic speakers not to be paid in situations where they should be, so by having set fees I am stating that autistic speakers are as valuable as any other speakers. People from disadvantaged groups – including autistics – can on occasion be considered of less value than others. This often translates to actual monetary value when it comes to public speaking. This is not on and if I can help address that by requesting a fee for my work then that has to be a good thing.

The main things to know about payment for presenting are that autistic speakers can be exploited and devalued and this is not OK. It can be a complex area with lots of unwritten rules making it challenging to navigate. The best thing for prospective speakers is to be aware of the potential for being taken advantage of, consider what your fees should be and be aware of the value of your your message.


New year reflection

I wasn’t going to do a new year’s eve post but I changed my mind! This will just be a short piece looking at what I learned this year and my plans for the future.

I had an amazing year in many respects. It was easily my busiest year to date. Alongside all my autism advocacy work – which was significant – I worked four days a week in my day job and started in a new team in January where I only knew one person. This took some getting used to by in hindsight it has gone really well.

I think it was a year of resilience and stamina and managing a huge workload while trying to be kind to myself. Whimsy Manor remains wonderful as does its furry inhabitant Mr Kitty. 2018 was the first year where I have realised that I have a very large profile, which is a very strange thing to apply to yourself! I mostly avoid thinking about it and focus on doing good job of whatever i’m working on.

Highlights for me were  MC-ing the National Awards for Disability leadership, featuring in national and international media refuting harmful statements about autism by a researcher, having a book I coauthored with Dr Emma Goodall published and having a chapter in the Spectrum Women book. Other highlights include featuring on a mural in Canberra and one of the young people I mentor getting into a graphic design diploma course straight after school and another getting a job at the Harry Potter shop, Quizically. Despite (or maybe because of) it being ridiculously busy, I really enjoyed 2018.

I learned:

  • I really don’t want to be anyone other than who I am
  • My very troubled twenty-something self is part of who I am now. I don’t need to fear that person
  • People love my work and it helps them in their life 
  • There is quite a large mismatch between my perception of my performance and others’
  • My workplace is amazing 
  • I know who I am. This has taken a long time to realise 
  • I have good judgement and I can trust myself to make the right choice 
  • ‘Fame’ and recognition are largely meaningless
  • I know quite a lot about autism 
  • There is a lot of very deep prejudice around gender diversity 
  • When you come out as being gender diverse you find out who your friends are – and aren’t
  • Embracing my gender identity has opened many doors and changed how I see myself and the world in many ways
  • Much as I hate it, I carry privilege and all that comes with it  – (white and middle class) 
  • I am stronger than I think
  • My mental illness does not have to destroy me and I can usually manage it when things get scary
  • I like and value myself
  • I am a proud Autistic and non-binary person 
  • I am motivated by the need to make change.

I don’t really set new year’s resolutions – why resolve to do something only on one day? However, I have some plans for how I approach life in 2019. 

I will aim to:

  • Be more compassionate of others, especially people who see advocacy as a route to fame and glory, which is one thing I really struggle with
  • Promote opportunities for more people 
  • Learn from others 
  • Listen more
  • Do better with taking down-time, which I am currently not very good at
  • Say ‘NO!’ more often
  • Maintain my friendships 
  • Work on some of the more difficult relationships in my life 
  • Appreciate the amazing life that I have.

I hope you have a great new year and that your world is filled with good things in 2019 and beyond. 

Purrs from Mr Kitty.   


Untitled design

Some of this things I did in 2018

Coming home: The value of Autistic space

I just recorded a radio show with an autistic comedian who has only relatively recently come to embrace her autism. She mentioned an experience of speaking to another autistic person and each of them ‘getting’ each other. A non-autistic person observing said ‘you are in your own little world’. While that summary might be viewed as somewhat critical, the experience we have where autistics spend time with other autistics is indeed our own world.

I have spoken and written at length about the idea of autistic ‘language’ and culture. Put briefly, autistic communication can be viewed as a different language to allistic communication (i.e. the communication of people who are not autistic or neurodivergent). This is evidenced when a large group of autistic people get together. There are generally no communication misunderstandings or social awkwardness. However, if an allistic person enters, then they are the one who has issues with understanding social cues! As I see it, this language or cultural difference is a key element of neurodiversity. The idea of ‘different, not less’ is at the heart of this experience of autistic language and culture being equally valid, just different.

I want to look into the idea of autistic space in this post. Autistic space is where autistic people are in the company of other autistics exclusively. There is a variant where most people in the group are autistic as well which is maybe something more inclusive but in between the states of autistic space and general society, or ‘allistic space’ I suppose.

I have had a few experiences of autistic space in my life and all have been memorable. The first was almost 10 years ago, in 2009. I attended a conference and the second day of the event was a workshop for autistic women and girls. The facilitator was an allistic man – something which hopefully wouldn’t be the case if the event was held now.  However, in the event in 2009, other than the facilitator, everyone in the room was an autistic woman or girl – and I imagine there were a fair number of trans and gender diverse people. I had never experienced anything like this. It felt like I had come home. Everyone’s comments resonated with me. I felt included and supported and happy to be myself. That was fifteen years after I was diagnosed but I see it as the first ‘real’ day of being me. That was my ‘find your tribe’ (as some people call; it) moment. 

Last year I had another opportunity to be in autistic space, as part of a research academy run by the what I have found to be a very inclusive and respectful research body, the Autism Cooperative Research Centre. This event ran for a few days. There were some allistic people but they were in a small minority. Most of the facilitators were autistic and the socialising was just amazing. I met new people happily and revelled in this opportunity to be among my compatriots. I see autistic people as being like expatriates in a foreign country. We may have learned the language  and customs but we never quite feel we ‘fit’. I feel like spending time with other autistics is like meeting someone from home and being in autistic space is like returning to my homeland. 

One of the things I learned at the research academy was that there is a sense of loss or grief when leaving autistic space. Imagine spending your entire life masking and trying to be accepted, trying to act like other people in ways you don’t understand, being bullied, being criticised for being yourself, finding other people baffling and struggling to be heard and understood and then finding yourself amongst people who not only understand all those things but also see things in a similar way to you? I have found while in autistic space that I want to stay there forever. I don’t think I am alone in this. I  hope one day it will be a lot more common to be in autistic space.

My final foray into autistic space was at a wonderful event – a retreat for autistic women organised by the Sisterhood Society, an autistic-run organisation based in Australia. I had to leave the event half way through as I had speaking commitments and it was a real wrench. I have never had such a lovely time socially, meeting new friends and catching up with existing friends. I was simply filled with joy the whole time. I would gladly have lived there for the rest of my life!

Of course I do have a sort of autistic space all the time which is my home, Whimsy Manor. It is just Mr Kitty and me so usually there are no people but when there are, most of them are autistic. I am always very definite on the point that Whimsy Manor is a safe space and people will not be discriminated against or ridiculed. It is also a very ‘me’ place as I have made it mine. I do feel very safe and happy here too. I know that most other people do not get this possibility to have their own safe space. This is another thing I would like to see people having access to because it is amazing.

To conclude, I think there are lessons to be learned from reflecting on autistic space. I do not know many allistic people who have devoted a lot of time to learning to ‘speak autistic’, although I know a few genuine and wonderful allies who make a point of doing so, which is much appreciated. I think there should be more autistic space – more opportunities for us to be part of it and more respect for the value of it. We don’t really need paternalism and well-well-meaning people trying to do things for us. We need greater understanding and respect for our ways of being and the knowledge that difference is so often a positive. More understanding of the value of and need for autistic space and the reason it is important would benefit all sorts of organisations and it would definitely benefit autistic people. I love visiting my autistic homeland. 


‘Why I cancelled Christmas’ – some thoughts and strategies on surviving the holiday season

It has got to that time of year where people ask me what I am doing for Christmas. I invariably say ‘I will be having quiet one.’ They usually look horrified as I go on to explain that I plan to spend the day with Mr kItty and all the people who live in my laptop and that instead of giving and receiving gifts, singing carols or eating too much food,  I will be making artworks and writing. This will be the fourth Christmas I have not spent with family. It is not that I dislike my family members or somehow want to punish them. It is just that all the expectations and chaos of a big Christmas usually result in a meltdown and a lot of related stress for me. While for me the solution to this is avoiding the whole thing, I understand that this is not the case for everyone.

Autistic people can really struggle at this time of year. Some of the challenges include:

  • expectations and worrying the day will not be as good as it is ‘supposed’ to be
  • Food revulsions and pressure to enjoy ‘delicacies’ which have a horrible taste or texture or are unfamiliar 
  • Sensory assault from bonbons, people talking loudly, loud toys and other things
  • Anxiety around giving and receiving gifts. ‘What if I didn’t get the right thing for…?’
  • Too much food and / or too much alcohol  
  • A big disruption to routine
  • Christmas decorations can be distressingly bright and sparkly or visually chaotic  
  • Compounding of tensions in families which often occurs at the holidays. Just imagine if for example, Grandpa doesn’t ‘believe’ in autism….
  • Christmas can highlight differences in philosophical and cultural beliefs – and any existing  conflicts in the between family members
  • If someone isn’t working or doesn’t have much money – as is sadly the case for many autistic people due to social discrimination in employment and other issues – this can be very obvious in disparity between the value of presents and contributions to the meal and result in feelings of shame 
  • Overwhelm and overload and potentially meltdowns caused by all of the above.

There are parts of celebrating Christmas which can be especially problematic for autistic kids. Santa at the shopping centre can be terrifying with loud noises, queues of other kids and their parents and flashing lights and sparkly things. In recent years many shopping centres have a ‘sensitive Santa’ for autistic kids and others who need a quieter experience but for some kids even this is too much. While the photo of children with Santa is seen as an important thing for many parents, if your child cannot sit for it then maybe be a bit creative. Get a parent or adult the child trusts to dress up as Santa Claus. If the child believes in Santa maybe be creative and say that the parent is a delegate of the ‘real’ Santa or similar. I am a firm believer that if putting autistic (and any other) kids through high anxiety and overload for something which is not really that important or can be replicated in an easier and more inclusive way, then don’t put them through the drama. We have enough challenges with the things we actually need to do without having stress in non-critical things that can be avoided! That goes beyond the Santa photo as well. If children find something which is supposed to be fun and a celebration highly stressful and unpleasant it is not a good thing. I always think that things like birthdays and Christmas celebrations are meant to be for children to enjoy so if children are in fact experiencing the opposite of enjoyment it might be time to consider some changes to the way the celebration happens. 

Many autistic adults may be spending Christmas alone, like i am! I would say if this is you, think about whether or not it worries you. If it doesn’t then yay to that. Have a great Tuesday. If it does worry you, there are a few strategies which can help. I know this because while I have not celebrated Christmas by choice for some years now, I still have some feelings of regret at being alone on a  day when so many people are with their loved ones.  What I do to address this is plan the day. I try to do something enjoyable and affirming. I also try to have some social time in the lead up to Christmas and in the few days afterwards. I spend Christmas online as well, chatting with friends and supporters all over the world. Do something really nice for yourself if you can. I will be cuddling Mr Kitty and I will sleep in without setting the alarm – which almost never happens! 

Quick tips on spending Christmas alone include:

  • If you are not bothered that is great
  • If you are concerned, plan something enjoyable 
  • It is important to remind yourself that the social expectation around Christmas isn’t ‘real’
  • Aim to view it as just another day  
  • Do something affirming 

And just to finish up with, here are some tips for an autism-friendly holiday season and Christmas  celebrations:

For parents 

  • Don’t assume all kids like Christmas 
  • Ask your child about what they like – and don’t like – about Christmas 
  • Be aware receiving and giving gifts may be anxiety-provoking
  • Ask your child what they want for the Christmas celebration 
    • To the best of your ability, incorporate their wishes 
  • Be aware of potential sensory issues with decorations, bonbons etc
    • Ask if there are any things your child does not want to be part of the celebration 

Christmas celebrations can involve:

  • Acknowledgement and affirmation of all family members and others attending 
  • Being accessible in terms of the sensory needs, social needs and likes of all involved
  • As with most things there is no need for hard and fast ‘rules’ – can be flexible 
  • It should be fun and enjoyable 
  • It should ideally respect the needs and preferences of all involved

So Merry inclusive Christmas to all who celebrate it and happy Tuesday to those who don’t! 


‘Sticks and stones will break my bones AND words can really hurt me’ – the important of language in inclusion 

Over my many years as an autism advocate I have met many people who complain about ‘political correctness.’ This article is my response to this. 

A few years ago I was asked to give a talk by a non-autistic, parent-led group. I knew some of the autistic parents in the town my presentation was in and had been doing work with them for some time. The organiser of the event warned me about ‘some hard-line activists’ which I worked out meant my autistics parent friends. At the talk, the ‘Dorothy Dixer’ (i.e. ‘easy’) question to me, aiming to put me at ease was from this event organiser. They asked me ‘how do we manage all these politically correct extremists?’ Not so much a ‘Dixer’ question but I answered it anyway. I said that ‘political correctness’ tends to be an insulting way to describe inclusiveness and wanting to be respectful of people from groups that face disadvantage in society. As such I didn’t want to do anything to ‘address political correctness’ and said it was a good thing to have. Not sure what the event organiser felt about that! It did highlight some of the issues so I’m glad they asked it of me.

This is a post about the meaning behind words and how they can drive respect and understanding or conversely fuel the fires of bigotry. It is a post on some ways to demonstrate respect and care. 

One of the key areas around language and autism relates to identity. Autistic people describe ourselves in a number of different ways, such as ‘I am autistic’, I am an Aspie’, ‘I have autism’ or ‘I am Autistic’. My understanding of identity is that the way a person chooses to identify or describe themselves is their identity. It can’t really be ‘wrong.’ The issue often comes when others impose their views on how someone ‘should’ identify themselves. My own experience is a case in point. I describe myself as ‘I am autistic’ or ‘I am Autistic’ on occasion too. This form of autistic identity is known as ‘identity-first. It is echoed in other communities such as the Deaf community. It comes from a view that autism is an integral part of who I am. I am inseparable from my autism. If you ’cured’ it I would cease to be me. It also comes from the idea that I am proud to be my autistic ‘me’.  Many health and disability workers have been taught to use ’person first’ language (ie ‘I have autism’). They are often told that person-first is ‘correct’ and identity-first is somehow putting people down. I cannot count the number of times some well-meaning health worker has explained to me that I should say ‘I have autism’ because I am doing myself a disservice being identifying as ‘Autistic’. Yes, I have no words in response either. Correcting someone on how they define themselves is very unhelpful, even if done with good intentions. My rule of thumb for identity is that however a person chooses to identify is their identity, no matter what anyone else thinks. It is, after all, their ’them.’

Some words are tricky because they are used and understood differently by different people. I was recently on a radio show alongside another person with disability and they thought the term ‘Disabled person’ was offensive whereas I have a different view. Some people – including me – view disability through the social model rather than the medical model. The social model of disability essentially states that people are disabled mostly through social context rather than us being somehow ‘broken’. If everyone in the world bar one person was a wheelchair user, that one person would probably be quite disabled in their experience of things. They would have to crouch down to get around buildings and the world would not be accessible for them. As I view disability this way, I often use the term ’Disabled people’ (note the upper case ‘D’), as a way of talking ownership of the word and reflecting that idea of the social model which implies that idea of Disabled experience, rights and culture.

A lot of the language around disability is problematic but not everyone knows that. There is someone in my life who needs to remain in my life but who I won’t name who seems to have little or no understanding of this issue. This person is confused when I pull them up for using the ‘R’ word – one of – if not the – most offensive thing you can say to describe a Disabled person. They have no concept that this isn’t me being ‘difficult’ but that they are saying something highly offensive to a lot of people, not just me. If someone expresses distress in relation to a word or phrase it is usually best to take that on board. Apologising is a good step followed by not using the word or phrase again. Even if it doesn’t seem upsetting and offensive to you it may well be for others. Once again it isn’t about somehow censoring your words, just being respectful to others’ needs. People may have a history of abuse and bullying by people using those sorts of words. I know I have, so when someone says it I am right back at school being hated by pretty much everyone. I find it helps to think of it like a horrible racist slur and just not say it.

I imagine to the uninitiated all this might be a bit challenging to get across but it is actually very important. That old saying ’sticks and stones will break my bones but words will never hurt me’ is actually a long way off reality. Words and how we describe ourselves – and are described by others – form a huge part of our understanding of identity and difference. Rather than thinking of this as onerous, see it as a means of demonstrating respect and care for others. If you want positive relationships with people from diverse groups then showing respect in how you speak and the ability to politely and sensitively ask if you don’t understand is going to make that happen a lot more easily. Words really do drive meaning and understanding. I could write  a much longer post on this, particularly around identity, but I shall leave it at this. 

same but different-2  

A small shift in thinking – positives of autism that are often not seen as such

I used to go to a church group. They were mostly very friendly and non-judgemental but one thing used to make me cringe. There was little boy who was four and I’m not sure if he had a diagnosis but I am fairly certain he was autistic. He was easily the most enthusiastic member of the congregation and would happily suggest hymns and offer his thoughts on the service. He was a lovely child but every time he said something, many of the adults would tell him to stop talking. It seemed odd that the same adults wanted the kids to be more involved in the service but this little person was extremely keen to be involved but this wasn’t OK for whatever reason. How the boy was treated broke why heart but also made me quite angry. I talked to a few people but sadly few of them ‘got it.’ What seemed to be happening was that a child’s enthusiasm was seen as a problem because it didn’t fit with the expectations of behaviour. The little kid was extremely gracious and I didn’t once see him respond angrily when a roomful of adults were shutting him down. This got me to thinking about places where autistic people have a lot to offer but may be attacked and criticised for it rather than it being seen as the strength that it is.

Passionate interests are an important part of this. Autistic people usually have at least one thing that we love more than anything else and are focussed on. Passions (sometimes known as ‘special interests’) can be a conduit for learning and wisdom. Many academics who are the world’s foremost expert on a topic are autistic and following their passion. Passions really can change the world. There are many famous  autistic people  whose passion has had a huge positive impact, from science to entertainment to inventing Pokemon! Yet so often our passions are termed ‘obsessions.’ This seems particularly to be the case for autistic children. I have parents telling me how worried they are that their child spends so much time on an ‘obsession.’ For autistic people  our passion often represents the most rewarding and enjoyable thing in our life. Having that taken away is a cruel thing and usually unnecessary. Certainly on occasion some autistic people have a passion which is negative or damaging but most of the time our passions are a great thing. I would recommend that people see beyond the ‘obsession’ to what it actually means – a strong engagement and interest in something which gives pleasure and engages and energises us. 

Our different take on life and the world and all that is in it is often seems as strange or ‘weird.’ We approach problems differently, often using logic. This is actually something which can be really useful. In the workplace, innovation is considered important and autistics often have innovation in spades! The approach to life that is so often criticised can in fact be an enormous positive. We can be amazing problem solvers.

We are often criticised for focussing on the small things, the details. In fact this ability to notice errors and see the smaller things can be a big plus in a range of settings, such as at work, where our skill as proofreaders and reviewers comes into its own. I am public servant and my skills at spotting errors in long documents has always been prized by managers.

There are many areas where autistic people face criticism but where our approach is actually a positive. We can have skills that others are incapable of. Instead of judging us and shutting us down it would be far preferable for people to recognise our skills and attributes for the positive that they are. This goes directly to ideas of neurodiversity and ‘different not less.’ If you view autism as being a negative thing, an affliction or curse then attitudes are likely to focus on the perceived negatives. However, if you approach autism from the perspective of strengths and respecting difference then the kind of positive attributes we often have are viewed as something valuable.

Seeing autistic people as we are and knowing and respecting us is better for everyone. What can be viewed as a deficit may actually be a huge strength. To see our approach and divergent take on life as a strength really only requires a relatively small shift in attitude for most people.  If only the church congregation in the story at the start of this article had seen things differently and embraced the young boy’s great attitude and enthusiasm. Instead of shushing and tutting they would have seen what the child who evidently loved church had to offer rather than being irritated.


Let’s talk about sex…and disability 

I had the great pleasure of being part of a panel at the Women with Disabilities ACT Annual general meeting last Wednesday. The topic was safe relationships and disability. There was a film called Mirrorball shown which was made a few years ago and looked at attitudes around dating, sex and relationships for people with (mostly intellectual)  disability. The film involved interviewing people with disability and their parents. The thing which struck me was the high level of assumptions of incompetence and deficits-thinking from many of the parents. They almost universally  saw relationships and dating for their kids as a negative and something to be concerned about. The panel included myself, an autistic asexual non-binary person, Katie, a heterosexual cis gendered young woman with down syndrome, Sue, the Chair of Women with Disabilities ACT and a doctor from the Sexual Health and Family Panning Clinic. It was a great discussion and it got me thinking about the way society thinks about disability and sexual relationships and why it needs to change. 

Historically people with disability have been viewed as sexless and childlike or as  oversexed and sexually inappropriate. There is little in between those two views. People with disability are also often viewed as exclusively heterosexual in their interest although in reality a lot of people with disability have a non-heterosexual sexual interest and expression. Sex is often viewed as something to discourage and a problem, rather than how sexuality is thought of for everyone else –  pleasurable and something positive to have in your life.

Another issue is around children. When I was kid in the 1980s, my mum worked in a doctor’s clinic as a receptionist. She told me how what she termed the ‘simple girls’ used to come in once a month and get their contraceptive so they didn’t get pregnant. While that might seem OK to some people, it is actually extremely fraught and problematic. Who makes that decision around controlling somebody’s reproductive rights? Are there any other groups in society who may not be good parents who have forced sterilisation?  Do they do that for people with drug and alcohol issues or people who are abusive? They don’t. This goes to the heart of the issues around sexuality and disability. 

I think the reason there has been and presumably still is control over the reproductive rights of women with disability and that sexual relationships are viewed as a negative relates to that view that people with disability are incompetent and need to be controlled and managed. There is often a sort of blanket view of the incompetence of all people with disability which makes no sense at all. I saw an example of this when I had a mental health worker who had a facial difference. People would speak to her like she was five years old. It used to really upset me and I would say ‘but your thinking and personality are in your brain, not your face!’ I know wheelchair users who get people talking down to them as if they are children and it baffles me. This results in people with disability being viewed as having pretty much the same needs and experience. This results in those view of incompetence and the need to have people doing things on our behalf.

When we look at sexuality another issue is at play as well. The idea of a physical or mental ‘norm’ and disability being a deviation from this. ‘But how can you have sex?’ people might ask incredulously. In society, things that are viewed as sexy rarely intersect with things viewed as related to disability. Sex is presented as the domain of conventionally ‘beautiful’, able-bodied people.  If you are physically, cognitively or mentally ‘different’ then the conventional view of sexiness does not include you. This can result in people being very uncomfortable to even think about, let alone discuss, sex and disability.

These things all point to the sexuality of Disabled people being something of a political act. we challenge the status quo simply by expressing ourselves sexually. It is one of those areas where I wish we didn’t have to be political because love and sex should not need to be. We should just be accepted and respected to do such things in the same way anyone else is. However, as we are not, bring on the activism I say! And this IS an area which requires activism.

On a personal note, I do not undertake sexual activity. I am not a prude and I am all for love and sex if other people are doing it, but I am asexual and have very little interest in sexual intimacy. As a disability advocate this causes me a lot of soul-searching and anxiety. I live a stereotype and it is a really unhelpful one. My asexuality is not something I talk about much and my concerns about it possibly justifying some unhelpful thinking are behind that. However when I stop and think about this, I realise the issue is not me or my asexuality but the existence of the stereotype itself. Asexuality is the way I am and I should not feel ashamed of that. Challenging that stereotype but being true to myself is probably a better approach than trying to hide away.

Things do seem to be changing in these areas, although maybe not as quickly as I would like them to! This is a huge area for advocacy as it goes deeply to the heart of ableism and discrimination. Our loves and relationships as Disabled people should be a cause for celebration and  joy not concern and worry. We have as much right to be happy in a relationship and to enjoy the pleasures of sexuality as anyone else is. We are not sexless children and we do not need control over every aspect of our sexuality and expression. The theme for International Day for People with Disability this year is empowerment and inclusion. Let us be empowered  to express our love and relationships in a way that might not be conventionally beautiful and may differ form the ‘norm’ but which is beautiful nonetheless. Let us be equal in our capacity to love and to be loved. Yes let’s talk about sex and disability and challenge the prevailing views so that people can express themselves and who they are sexually. 



The secret of my success…(ful strategies), or managing adversity well

I am currently undertaking prep for a medical procedure which is unpleasant anyway but because I have done this three seperate times in the past and it hasn’t worked in any of them, the prep is twice as long and very unpleasant indeed. I have spent the past two days feeling very tired and confused and this is interspersed with drinking the prep solution which is a sensory nightmare requiring a large number of strategies to make it possible. Last time I did this which was only a couple of months ago, it impacted on the absorption of my mental health meds and, had I not made an emergency appointment with my psychiatrist who immediately increased my meds, then I would have gone into psychosis which in my experience can last for years and result in major disruption to my life and be very scary. Added to this I have eight presentations and MC-ing a national awards ceremony coming up in the next three weeks so being really unwell is not on my list of options. 

All off this is a perfect storm of nasty and stressful. So why am I happily sitting at my computer writing this blog post and not standing out the front of Whimsy Manor holding up a sign that says ‘The end is nigh’?? Why am I not filled with fear for the future and misery at having to go through this horrible medical procedure yet again? There are actually a few reasons.

The first is something called radical acceptance. Radical acceptance is not the same as ‘accepting’ that something horrible is OK and in doing so invalidating your experience. It is more about accepting things are how they are and you can’t go back in time and change them. From that position of acceptance you know that you are in control of how you respond to the situation. Regretting the past is the key to misery but radical acceptance is the key to managing life’s difficulties and being a lot happier then you would be if you spend your energy wishing that the past had somehow been different.

The second reason I am doing OK is that I have strategies. Strategies do not fix the issues. I still have to go through the medical procedure, I still have the worry about mental illness and giving all those talks, but strategies mean I can get through the worst of the difficulties. Strategies are individual to each person. They are about practical, sensible activities to lessen the impact of something. Some of the strategies I am using now include putting in place a practical means of making the prep solution drinkable. This is a strategy I have learned over the past three times of doing it so I am using knowledge from past  experience to improve a situation. Another strategy I am using is to practice my talks for early December. The more prepared I am, the less it matters what my brain is doing when I give the talks. 

I am also quite adept at the mindfulness style of seeing things. I try to not get bogged down in the past or terrified of the future but focus instead on the present. What I need to do right here right now. I could think ‘ugh, I have eight lots of prep solution to drink’ and become totally overwhelmed or I can think ‘Right now I have one cup of prep solution. The task at hand is to drink this cup. I shall dedicate my entire focus on doing that well in the present time.’ This might sound difficult but it is in fact not too hard when you start doing it. This makes a difference in pretty much all miserable situations. Once again , ti doesn’t make the issues go away but makes them easier to manage and removes a lot of the suffering element.

I am resilient in that lovely sense of being able to turn adversity into a teacher. This is a great quality and one I would wish for everyone else too. Resilience is a skill which takes time and practice to acquire but it is a very useful one to have. I find it stops me from being terrified of the future.

The last thing I am using to manage is my thinking and attitude. My approach is one of gratitude. I am grateful that I have the strategies I do. I am grateful I have a full-time job with sick leave and that there is no chance that when I return to work on Wednesday I will be told I am fired for my two day absence. I am grateful I have social media so can communicate with friends even if i can’t leave the house. I am grateful that I have an internet connection….I could go on. Shifting my focus from negative to positive is a hard thing to do but it is a skill that has improved with practice. 

These qualities do not fix the problem. Being accepting and resilient does not make colonoscopy prep taste nicer. The thing about all these strategies is that they make something horrible more manageable. They are actually more useful than magically removing the issue would be, because these skills  grow over time. In the past I was terrified of mental illness and getting unwell. Now I am not. I know if I am unwell I can manage it to a point and I know it will pass or at least change in its nature. Strategies give me strength to deal with every issue I face. They are a framework for dealing with life. They are all hard fought and won and came from me getting through some extremely difficult things. I guess that gives value to unpleasant past experiences if they can give value by becoming a teacher. I hope you got some value from my strategies. I do like to share helpful things as there isn’t much use to them inside my head!

*And for those of you who want the colonoscopy prep strategies I use…

  1. Make 1 litre of the prep and put it in the fridge until it is very cold
  2. Pour 250ml of the cold prep into a cup 
  3. Make up 250ml of stock / clear broth which is allowed in the liquid  diet
  4. Drink some of the stock and then drink as much of you can of the prep through a bendy straw
  5. Drink some of the stock. Keep doing this until both stock and prep are finished. Then repeat the process until the whole litre of the prep  is finished 
  6. In between cups of prep it can help to suck on a barley sugar – also allowed in the fluid diet
  7. Cultivate a sense of resolve and self-motivation. e.g. thinking ‘I can do this!’
  8. Set yourself a reward for an agreed milestone
  9. I often gamify the process by reminding myself of how much prep I have got through 

resilience doesn't fix your problems but it makes them a lot more manageable