‘Respect the stim!’ or why I detest ‘quiet hands’

I was on one of those online creative websites selling people’s designs searching under ‘neurodiversity’ when I saw a t-shirt which said ’Respect the stim!’ I thought that was pretty awesome and it got me thinking about stimming – how it is an activity which has a lot of meaning ascribed to it and how it relates to ideas of autistic pride and yes, respect.

So what is a ‘stim’? If you google it you will get this: “Self-stimulatory behaviour, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or words, or the repetitive movement of objects common in individuals with developmental disabilities and most prevalent in people with autism spectrum disorders.” Sounds a bit pathological doesn’t it? 

In fact, for autistic people, stimming can be a huge positive – a way of managing anxiety and stress and feeling good and also expressing feelings like joy or excitement. Stimming tends to be something enjoyable. I often find myself stimming and I am unaware of doing it .

Stimming can be seen as political. Children who subjected to Applied Behaviour Analysis and related kinds of  ‘training’ are often punished or sanctioned for stimming. Stimming is often an activity that makes us look visibly ‘different’ to the allistic folks. ‘Therapies’ (for want of a better word because they are far from therapeutic) like ABA seem to be all about making autistic people look ‘less autistic’. Apparently looking autistic causes bullying. Actually, what causes bullying is, um, bullies. The best way to address such poor behaviour as bullying people for being different is not forcing the autistic child go look more outwardly allistic but instead to make an environment – and world – for them where autistic people are respected as we are. It is not a good way of addressing bigotry to make divergent people look less divergent.

For autistic kids an adults, being forced not to stim has a load of negatives attached. One of these is that the child will probably question themselves and may well start to hate and revile who they are. Trying to look allistic when you are not is like studying for an Oscar-winning role – it is always going to be an act, no matter how proficient at it you may be and it will be hard.  Squashing down who you are is not a good idea  and leads to things like self-hatred and self-criticism. It goes against who you are. It is cruel. Far better to encourage autistic people to be proud of themselves and stim freely.

The pathologising of autism is often bound up in responses to stimming. That horrible term ‘quiet hands’ is often levelled at autistic kids when they are flapping their hands in joy or excitement. To me ‘quiet hands’ is telling kids to ‘stop being yourself. You are embarrassing me. Act normal’. These are not sentiments I even like to reflect in this blog and certainly not something autistic children should be told.

Stimming can be a great joy. I have a lot of my own stims – clicking fingers, saying some phrases in certain situations, wiggling my fingers and playing with fibre optic lights. When I do these things I feel completely free to be me. But it is a relatively recent thing for me to stim publicly and some of my stims even now happen behind closed doors at Whimsy Manor. That judgement at ‘looking different’, the years of bullying I endured because I didn’t quite look or act like the other kids: these things did some major damage to my sense of who I am and it still lingers many, many years afterwards.

I tend to think stimming should in fact be encouraged, providing it is not harmful (and a small proportion of stims can be harmful, in which case some harm minimisation techniques may help). Stimming helps express a number of things from joy and excitement to addressing stress and anxiety and soothing when encountering a new or otherwise scary situation. If others have an issue with the stim, that is not the fault of the person stimming. In this instance, teaching autism acceptance and respect and working  to address judgemental attitudes is much more useful to my mind than stopping someone from stimming.

Stimming can be a deescalation strategy for overload for some people. Imagine how frustrating and upsetting it would be to do some deescalation when getting overloaded, and then be told not to do that anymore meaning that the person has a big meltdown and then gets punished for that! I think that kind of situation happens far too often and comes from a place where autism is not well understood and autistic people – kids and adults – are not respected.

My friend, autistic artist Prue Stevenson has done some great work on stimming, including this excellent project called ‘Stim Your Heart Out.’ You can find it here: https://www.stimyourheartout.com 

So yes, respect the stim I say! Now I must go buy the t-shirt…

i loe muy sensory-=seeking stimmy experiences. lights and sparkly things usually instantly make me happy.

 

Advertisements

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.

13533362_1053817438032976_3989541842259093121_n

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.

IMG_0245