Autistic burnout

Autistic people tend to be prone to burnout. I know I am! Burnout happens when you take on too many things or when life is overwhelming for a prolonged period. It can creep up on you. I am a shocker for burnout simply because of the size and complexity of my various workloads. In the course of a month I will:

  • Go to work in a responsible job for 4 1/2 days per week
  • Write  at least four blog posts
  • Create a Yeme or two
  • Give more than one talk or prepare talks or practice talks – or all three!
  • Respond to queries from people all over the world
  • Write an article for someone
  • Maybe do some media
  • Attend a committee meeting or two
  • Review or endorse a book 
  • …and maybe a few more things! It can be quite a lot to manage.

I have experienced burnout although probably less often that you might imagine with my workload! The reason I avoid burnout is that I love almost everything I do which means it is not a chore or a burden but a passion. On the occasions I have become burned out it has always related to people rather than work tasks. On one occasion I had a person who was very angry at the world using me to vent with. This person would message me dozens of times a day. Every time I heard a message alert then my anxiety would go sky high. It was awful and it took me months to ask this person to leave me alone. I am more assertive now so I would say something sooner if the same thing happened now but at the time I just felt trapped and stressed.

My problem with burnout is that I don’t see it coming. Because I love all my work I am reluctant to decline anything. I also have a chronic case of fear of missing out which doesn’t help! I have an analogy about burnout that I came up with recently. If you imagine you have a car with tyres that are getting a bit worn. You keep thinking about it but put off doing anything because you don’t think it is really a problem. This goes on for a while until you tyre blows out and you are left by the side of the road with a car that will need some attention before it works again. That definitely describes my experience. I put off doing anything, I say yes to everything and then remind myself that I might get burned out but then dismiss it again by which time I am burned out!

It is far preferable to avoid burnout before you get burned out! One thing I have which is also the image for this piece, is a ‘NO!!’ Buzzer. It sits on my desk and says ‘NO!!’ In a variety of amusing ways. My coauthor and lovely friend Dr Emma Goodall gave it to me ages ago. It was only partially a joke and I actually find it very helpful. My mum always worries about my workload and tells me to stop taking on so many things. Of course she is right but it can be hard. Perspective can be helpful. If I imagine I have a talk booked and I get in a car accident and can’t do the talk, do you think the world would end? Of course not. Perspective can help you decline or postpone things that overload you. I have also found that the state of my mental health impacts on whether I get burned out or not. The same things may occur but one time I will get burned out and the other not and the difference I can see is the state of my mental health. 

If you actually do get burned out it is essential to address it before it becomes entrenched. I have learned it is key to take time out. The message is still NO but also ‘Stop’. It can take a long time to get over burnout. You can learn from the experience – what it feels like, what your triggers were etc – so that you can hopefully avoid it again. I find my life is a constant battle to avoid burnout. And feel like I am probably not the best person to give advice on this given how I don’t always heed my own advice! 

All about April – twenty years of advocacy 

As an advocate I feel compelled to write about April. I would rather not truth be known but I think it is important as there are still a lot of unhelpful attitudes around autism ‘awareness’. However, I don’t want to write some negative piece despairing about all that is wrong in the world. Instead I want to talk about the past almost 20 years of my advocacy career and how things have changed and continue to change.

I wrote my first book, my autobiography, with the support of the amazing Polly Samuel in 2005. I was all of a sudden thrust into the world of autism advocacy – whether I wanted to be or not! People these days call me a trailblazer and that I am the giant in the expression ‘standing on the shoulders of giants’ but when I first started my advocacy journey I was terrified! It was a different time. Of the advocates still working now in Australia, around five of them were around when I started out. Neurodiversity was a very new concept at the time and talking about anything positive around autism was met with incredulity is dismissiveness from allistic folks. Social media barely existed and most of the discussion around autism came from neurotypical parents of autistic kids, many of whom were not very autism positive to say the least! 

As time went on things changed, Firstly they changed for me! For the first few years after my autobiography came out I was not a very passionate advocate. I did talks if asked but I was too busy enjoying my new professional job and being passionate about that to think much about the autistic community. In 2012 everything changed. I met a young autistic man who had been severely disabled by the people in his life not giving him the chance to do anything. He had been shielded from any issues or challenges and when I told him I was an autistic public servant who had written a book he called me a liar and said it was impossible. Enter Yennski’s passion for advocacy! I was horrified by how this man had been so severely limited by the attitudes of others and their deficits thinking. I realised that if there was one person like this then there would surely be more. So I set about trying to change the world – and I am still on that path now over ten years later!

Over the years I have seen a lot of changes in attitudes around autism. When I started out:

  • there was very little view of autism having any positives
  • The only representation of autistic people in media etc was negative and based in stereotypes
  • Autism was seen as a negative – a curse or an affliction
  • Autistic voices were rare or non-existent in the dialogue around autism
  • There were hardly any autistic advocates or activists 
  • ‘Warrior parents’ drove the narrative
  • ABA and other harmful therapies went unchecked  

Of course lots of this still goes on but the difference is that it usually gets challenged. I  remember a few years ago seeing an article online about neurodiversity. I was delighted and amazed as it was the first reference to neurodiversity in the popular media that I had ever seen. When I looked at the names of the autistic people that were quoted there were some I had never come across! I was delighted. 

And now to April… Autism awareness used to be the April thing. Many autistic people really don’t like this. I certainly don’t. The event used to be driven by a very problematic organisation which is stuck in the dark ages and the whole idea of awareness bothers me. I mean bullies are aware of their victim being different. Awareness alone ifs pretty pointless and unhelpful. In the past few years wether have bene some great challenges to the whole April light it up blue thing. At first it was just autistic activists who raised issues but now it is more mainstream and even neurotypical people who have little or no lived experience are willing and even keen to promote a more inclusive approach. There are other days and events which are more inclusive too, such as Neurodiversity Week in March and Neurodivergent / Autistic Pride Day in June. 

I will finish with another anecdote from my life – I do love a good anecdote! A while back a certain TV personality decided to shoot their mouth off and blaming his poor behaviour on his being autistic – despite the fact that he wasn’t autistic – and autism is neither a reason or an excuse for violence. I saw the posts and so many people had criticised this person for their poor behaviour. The criticism was from the mainstream, not just advocates. We still have a very long way to go but as someone who has been around for a very long time I can say with some hope that things are changing and often changing for the better. 

I’m not ‘aware’ for April, I’m reflective and filled with hope for the future. And after almost twenty years of doing this I wonder if I might get to retire sometime? I think the current group of amazing advocates and activists probably demonstrates that as a possibility… but I will still write the books. I love writing books!

What is lateral violence and why is it not OK?

I came across the notion of lateral violence some years ago, watching a documentary on a group of First Nations advocates in Canada. So what is it? My view is this: People from oppressed groups (such as Disabled people, LGBTQA+ folks, People of Colour, First Nations people, refugees etc) can fight the power. This to my mind is a good thing. Advocacy and activism to address structural barriers and discrimination in society is a very good idea. However, there is another option to direct outrage and anger. Instead of fighting the power, some people from oppressed groups fight one another instead. This is what is known as lateral violence. It is widespread and – unlike fighting the power which tends to be helpful – is damaging and actually sets back the cause of advocacy and activism. 

I have been on the receiving end of lateral violence quite frequently. It usually seems to take the form of jealousy or status anxiety directed again people viewed as ‘successful’ within a community group. It is hurtful and serves no useful purpose. I have had people attack me many times and the only reason I could find was jealousy and lateral violence. I find it extremely disappointing. We do so much better united than divided and lateral violence only ever divides us.

And despite being unhelpful for the cause of liberty and empowerment, it can also put people at risk. Many of us in the advocacy community have low opinions of who we are and struggle with our sense of belonging so being targeted can make us feel really crappy. Attacking one another does not help anyone and puts an image of a fractured community to the wider world which may already hold negative views of us.

For me when I get confronted with jealousy and lateral violence I get quite puzzled. Some people manifest their lateral violence through targeting ‘famous’ people within the community. In Australia we have that idea of ‘tall poppy syndrome’

where anyone successful is a target. I have come across lots of people who don’t like me without even having met me due to me being apparently too successful. Despite being hurtful and rather rude, it is also silly. My life is anything but easy. I have schizophrenia which makes life really challenging and sometimes life threatening, I have experienced significant trauma and violence over the years and I have spent over 20 per cent of my life in institutions. Nobody in their right mind would be jealous of that!

I think lateral  violence is one of the biggest issues we face as advocates. I think it is the result of oppression itself and that the more we actually fight the power then the more united and empowered we will become.  

Transgender Day of Visibility 

Content warning: Reference to violence, bigotry and suicide

Yesterday, 31March, was International Transgender Day of Visibility. I think this is a really important day. It was created to celebrate trans experience and promote pride. The other major Transgender day is Transgender Day of Remembrance which is more focussed on mourning those we have lost due to violence and suicide. Trans day of visibility has a more celebratory focus and I think that is something we need as well.

As I mentioned in a previous blog post, there is quite a lot of hatred and transphobia around at the moment. The bigoted minority seems to be growing more vocal and getting traction for their horrible message of hatred. We all need to stand up on the side of good and right and inclusion. This is where events like Trans Day of Visibility are so important. 

I always worry about complacency in this space. There is a view with some people that things will somehow just get progressively more inclusive until bigotry is a thing of the past. I can categorically say that isn’t the case. There is no room for complacency. This doesn’t mean that everyone has to protest or lobby every day. Different people show their support in different ways. For example I am not a big protester these days but I have a reach in the community through my writing and talks. As such I try to use that as a platform to hopefully counter the hatred which is so prevalent.

On a personal note I find the hatred really upsetting. There are people out there who hate me simply because I exist as a trans person. The hatred can make you want to hide away, to go into the closet, metaphorically close the door and not tell anyone about your identity. What a horrible world that is. The hatred actually makes me want to be even more visible so others feel supported and more able to come out themselves. I hate the closet. It is dark and scary and lonely. As trans people we deserve love respect and understanding – just like everyone else does. We have the right to be out loud and proud.

Visibility is such an important thing. If you can’t see it you can’t be it. For trans folks who have recently come to their identity having strong, positive trans role models is a wonderful thing. Having people who refuse to be silenced by the bigots makes it harder for the bigots to spread their nasty message. It can be really hard though, and I would never blame anyone for feeling unable to come out. 

I love my trans identity. I am immensely proud to be who I am. When people attack me I use it as an example of why bigotry is not OK rather than trying to make myself invisible. My world is an inclusive one but I know that for so many trans people – especially kids and young people – that they are isolated and cut off from their peers and communities. I really don’t want that to be the case for anyone. I want a world where we can be proud of who we are and there is no audience for bigots. 

Managing my anxiety – sharing some tips and strategies 

I have written a bit about mental health over the years. I have written two books on the topic and given countless talks. My own mental health has been an issue for most of my life, even though for some of that time I was unaware of what was actually going on. I have a diagnosis of schizophrenia which seems to eclipse everything else when I talk to a psychiatrist or psychologist. I also have anxiety which feeds into my issues with schizophrenia. 

Almost every time I have experienced psychosis it has happened after a period of extreme anxiety. However this was not picked up in dozens of hospital admissions. Every time I was in hospital I was psychotic so that was what got treated. Being psychotic makes it very tricky to articulate what is going on which meant I didn’t get help for my anxiety for many years. I knew for many years that anxiety fed into my schizophrenia and was the catalyst for many psychotic episodes. It wasn’t until 2021 that a hospital psychiatrist worked out that anxiety was a big contributor to my problems. This psychiatrist actually put me on medication for anxiety which made my life a lot easier to manage.

Like many autistic people my anxiety is pretty much constant. It varies in severity and impact but it is always there. It doesn’t seem to matter what the trigger is – I could do anxiety at an Olympic level! In the past I have had pathological anxiety around:

  • Spiders in the house
  • Fear of vomiting
  • Anxiety around work and perfectionism 
  • When I was a child I was terrified of saying ‘Oh my God!’ because my family were very religious
  • Fear of being assaulted 
  • Social phobia
  • Plumbing issues
  • Being hacked 
  • Computer internet not working 
  • …And a bunch of other things.

When I look at this list it seems silly but all of the things listed resulted in misery and some resulted tin hospital stays. 

I am far from an expert at managing anxiety but there are a few things that I have found helpful.

  1. Medication. I take a low dose of an antidepressant to help with my anxiety. This has been life-changing. You do need to be careful with anxiety meds as some of them are addictive. Having a conversation with your treating doctor can be helpful as they know a lot more about medication than I do!
  2. I have one which I simply call ‘Trump is at the door.’ I will explain… I was staying in a residential mental health service in 2020. My key worker described anxiety and worrying thoughts as being like a person knocking at the door. You can’t make the anxiety not be there – like you can’t help there being someone at the door. You can, however, decide whether or not to let them in. I added to this by saying it is Donald Trump at the door! There is no way in the universe that I would let him in! Yep – very effective!
  3. It can help to run what is worrying you past a trusted friend / family member / partner. Their perspective can help you see thin things in a less stressful light.
  4. Practice meditation – in a way that works for you. Many autistic people absolutely detest mindfulness meditation. I myself am not a big fan! The way I ground myself and relax is to watch nature relaxation videos on Youtube which have film of birds or flowers set to music. I absolutely love this and it performs the same role as mindfulness meditation without actually being mindfulness meditation!
  5. Avoid avoiding! Putting off something you need to do because you are anxious about it can be counterproductive. Instead, if you need to do a thing then do that thing. You might need support but it is important not to avoid necessary things because that avoidance tends to compound and result in your life being diminished as result. I was in hospital once with someone whose anxiety around showering meant they had not showered in three months. That is an extreme example but ti can and does happen. 
  6. Do things that you know have worked for you in the past.
  7. If your anxiety is around doing something new then planning can help. The approach used for kids called social stories is a principle that works with all ages. It essentially means introducing yourself to the new thing gradually and in a safe environment before you actually need to do it.  

The last thing I will say is that in this space the adage ‘do what works’ is a very useful one to remember. Anxiety is inevitable but there are definitely things you can do to address it.

No place for hatred – challenging bigotry

There seems to be a lot of hatred around at the moment. I actually think there has probably always been a lot of hatred around. Humans have the capability to be amazing but also quite horrible,.

As a transgender person I am viewed with hatred by a lot of people. They hate me because I exist. This is so not OK but it is real. I actually have something called passing privilege. This means people assume I am a cis female and so do not discriminate against me for being transgender just by looking at me.

I have had assumptions made based on my appearance in the past. In late 2010 I spent time in hospital for mental health reasons. When I was discharged I went to visit my parents for Christmas and they wanted to make sure I was OK and give me a positive experience. My mum had a colleague who was staying with her parents and they apparently had amazing Christmas decorations. We drove for about an hour to their farm. The Christmas decorations were indeed impressive but sadly the family were impressively racist. They were actually Nazis and it was just awful. I didn’t know what I should do. The worst part was their assumptions that I was on their ‘side’ due to my being white. Ugh! how absolutely horrible but an example of how assumptions based on observing a person through a particular lens can and do occur. 

Hate festers on social media and people who think just awful things have a big platform for their hatred. For me, the kinds of hatred that affect me are transphobia and ableism. These are different kinds of things in my experience. The ableism I have experienced focuses on infantilism, deficits- thinking, micro aggressions and inspiration porn. In comparison transphobia is white hot nastiness and overt hatred. The is no place for hatred to my mind. We all deserve respect and kindness. I was talking to my mum recently and I said to her that I don’t hate anyone and I don’t. I don’t even hate people who have done dreadful things to me and I definitely don’t hate any groups in society. People being awful to me just makes me sad and disappointed.

While I don’t consciously hate anyone – group or individual – I definitely have some unconscious bias. As a white person I know I have some racist thinking going on, even though I really don’t want there to be. It just pops up unexpectedly from time to time in a very unwelcome manner and makes me feel horrible. As a middle class person I have some bias around income but I really wish I didn’t. Privilege of necessity seems to come with bias – conscious or unconscious. As people of privilege all we can do is work to understand our biases and address them before they harm anyone. 

I hope the work I do helps to address hatred. There is no reason to hate someone due to their belonging to one or other group. We need to challenge hate whenever it happens, especially if it is in influential forums.  We cannot be complacent. The world will not somehow magically get better and better. If we let things slide then things could actually get a lot worse. It can be hard to call out hatred – and it is essential to remain safe and protect ourselves if we do. However calling it out, standing up and being counted, metaphorically, is what helps to drive hatred back into the shadows. 

This is an ongoing issue and it is essential to address hatred wherever it arises. You are not alone – there are lots of others who want to stand up for inclusion, respect and kindness. I am not a big protester any more so I use my social media presence to discuss these sort of things rather than take to the streets. I think it is about people doing whatever they can within their capacity and showing the haters that bigotry is not ever OK. .     

Things ableists say – or some disability no-nos and how to address them

As a disability advocate – and a Disabled person – I come up against some pretty unhelpful comments at times. This is a list of basically big no-nos and why they are really not OK.

One which is a total doozy is who someone has a visible disability (such as a wheelchair user) gets told by some well-meaning person that ‘I will pray for you.’ Big ugh to that. It assumes firstly that the person WANTS to be prayed about, regardless of whether they are religious or not and also that people with disability are in need of prayer. Would these people say to a narcissist ‘I will pray that you stop being a asshole’ or for a person who is arrogant ‘I will pray that you stop being a dick’. It is an insult and really not at all helpful.

Another one which I think most Disabled people struggle with is ‘inspiration porn’. This is a term coined by the late great Stella Young and refers to when Disabled people are considered inspiration for doing everyday stuff. I once had someone tell me I was an inspiration because I take the bus!  That is not inspirational, it is just how I get to work! The worst thing with this is how pervasive it is. I have given talks and spoken about inspiration porn only to have attendees come up to me afterwards and tell me how inspirational I am! Ugh!

There are some autism-specific ones as well although these probably relate to other disabilities too. A person at one of my book launches came up to me and in all honesty said ‘You don’t need to say you are autistic. You could pass for normal.’ Major ick to that!  I really, really don’t want to pass for normal, whatever that is. This is not a compliment.

The other one I get all the time is ‘Oh but we are all on the spectrum somewhere.’ No, we are not. If we were there would not be such a thing as autism it would just be called being human. This comment is very invalidating of autistic people’s experience. It is another of those well-meaning things which is not good at all.

Another one is ‘you don’t look autistic’. What the crap does autistic look like!! There is not an autistic look. We just look like people. 

People pulling me up on using identity-first language (‘I am autistic”) is also highly problematic. The way someone identified is correct and many autistic people use identity-first language. It is actually inclusive not wrong.

The ‘best’ I have ever come across was when I was at a conference a few years ago. I got talking with a bunch of neurotypical conference staff. One of them asked ‘Do you live at home with your mummy?’ I was horrified and replied that I lived in an apartment that I own and that I am paying off with the salary from my high level professional job!

None of these things are ever OK but they are sadly very common. I think the best thing to do is challenge people who they say these things. Often they come from ignorance rather than intentional hostility.   

Eye contact is not an essential means to communicating

I am autistic. One attribute of my autism – and of many other people’s too – is that I struggle with eye contact. Different people have variations on this theme. For me it means I find if I look into someone’s eyes I can see into their soul. It is exceedingly unpleasant to say the least. If I look someone in the eye it is always accidental. I don’t know what colour my mum’s eyes are – our anyone else’s for that matter. My cat has beautiful yellow eyes. I know this because I don’t mind looking into a cat’s soul. They are beautiful creatures. Humans are a bit scarier!

The problem faced by many autistic folks with similar experiences to me is that most neurotypical folks seem to like making eye contact. Even if I could bear to do it, I would struggle. For example how long do you look in their eyes? I honestly don’t know. Like many autistic people I have learned that you are ‘supposed’ to look in people’s eyes. If you don’t – or if you do it ‘wrong’ – people lose their trust in you or think you are weird. Apparently you need to look in people ’s eyes to demonstrate you are telling the truth, which is weird because I always tell the truth but hardly ever make eye contact and if I do it is by mistake! Sometimes neurotypical people and their quirky ways baffle me completely.

Because I learned form an early age that eye contact is expected, I found myself learning to look at people’s faces – but not their eyes. I would look at their mouth or at their nose. It usually fooled them! Of course as a neurodiversity activist I don’t like the idea that I changed my behaviour in order to look more ‘normal’ but lots of people do it. It is a survival mechanism.

So, some thoughts on eye contact…

  • If eye contact was essential for communication – as some people think it is – then the telephone would not work as a means of communication! Also text messages and emails wouldn’t work either
  • It is not ‘natural’ to make eye contact. Many cultures consider eye contact disrespectful and don’t do it
  • Looking in a person’s eyes is so overwhelming for me that it makes communication almost impossible.
  • Forcing people to make eye contact is not OK and is very cruel and ableist. It is done as part of some harmful ‘therapies’ and is a way of trying to make autistic people appear more ‘normal’ – and is never OK
  • For those who enjoy eye contact, please spare a thought for those of us who don’t. We are not being rude or disrespectful – just protecting ourselves from overwhelm and unpleasantness  
  • Neurodiversity means just that. Everyone is different and that is absolutely OK 

Get up stand up – knowing when to speak out

The other day I was talking with some neighbours that I hadn’t met before. One of them was a parent of four autistic adults and the other was an ABA ‘therapist’. Cue very uncomfortable conversation. I exited shortly after the ABAA ‘therapist’ said ‘oh but we’re all on the spectrum somewhere…’ Afterwards I felt like a coward because I didn’t call her out on the nastiness and ableism.

Note for people who haven’t come across it before: ABA is basically compliance ‘therapy’ – similar to conversion ‘therapy’ used against gay and trans people. It is awful on many levels. Some forms are focused on punishment and forcing autistic kids to be ‘less autistic’ such us around eye contact or stimming. Other forms focus on rewards for seeming more neurotypical. Whichever way I think it is an awful thing – along with many others. To my mind autistic kids should be celebrated and supported for being their amazing selves, not forced into some kind of ableist compliance ‘normal’ nonsense.

Anyway, this post is less about ABA and more about my perceived cowardice. I said absolutely nothing in response to some pretty problematic thoughts on autism form my neighbour. When I got home I felt dreadful. I felt like I had let the side down and not been a very useful advocate  at all. I posted it on social media and people responded by saying it was OK to conserve my ‘spoons’ and protect myself from potential hostility but I still felt awful.

I am an advocate. This requires some pretty significant bravery at times. There are lots of people out there who make a point of disliking what I say and even who I am. I am a completely out transgender person and a completely out autistic, ADHD and schizophrenic person. I frequently publish material that could be viewed as contentious – or even wrong by some people! My direct reach on social media is over 30,000 people so when I post content it tends to go a long way. So why was I unable to challenge one individual on what I viewed as poor behaviour and will I do it again?

I think I probably actually was doing the right thing the other day. My mental health is always a major consideration and getting in an argument with my neighbour would probably only serve to add to my mental health nastiness. I suspect that had I launched into a debate around the Neurodiversity movement, ‘different not less’ and ‘nothing about us without us’ it may not have actually made any difference to their thinking and may even have made her more difficult than she already was. We are all at a different part of our life journey. I have found this with some people – often neurotypical parents of autistic kids –  who struggle with my message and then they do some more living and gain experience and they are receptive to my message. I have spoken up in the past too – my response the other day was not really typical and maybe I should get the occasional break! 

It is hard to stand up for what you believe sometimes. There are different ways of doing it and I think it is OK to not use the same strategy every time. We are not robots and one day I may be able to be an out loud and proud activist and the next we might want to stay home with our kitty and watch Netflix! 

 

Is autism a disability?

This is a question with a few different answers – depending on your politics!

I was diagnosed as autistic in 1994. Back then it was called Asperger Syndrome. The clinician – a clinical psychiatrist – said that I fulfilled ‘all the diagnostic criteria for a diagnosis of Asperger Syndrome’. I was officially autistic. I didn’t accept the diagnosis for another seven years. Part of that was because I thought it was a disability and I really didn’t want one of those! 

Since then I have gone from being in major denial to being one of the most visible autistic advocates in the world. I did end up accepting the inevitable, writing a book and I guess the rest is history. But that doesn’t answer the question. Do I think autism is a disability?

Autism is listed in a publication you may have heard of called the DSM 5. This book lists a whole load of mental illness conditions and neurological conditions. The DSM 5 is used by clinicians around the world to diagnose brain-related ‘things.’ Autistic people gaining a diagnosis – at least in some countries – get the diagnostic criteria from this book. Having a diagnosis of autism is technically a disability. But is it actually one?

I view my autism as an attribute – like my ability to write well, my capacity for love, fairness and kindness or my liking cats – possibly more than is healthy! I do not view my autism as a disability because the disabling aspects of autism – at least in my experience – are almost entirely due to the rest of the world not being very autism friendly! Given loud music or stinky smells can put me in a very stressful sensory place but these are only an issue when others don’t want to accommodate my needs. The workplace can be a positive or a negative experience for me but this tends to be due to the attitudes of my managers and colleagues and their understanding of autism  rather than my autism itself. It is actually friarly easy to accommodate my needs. As such, the level of disablement  due to my autism is largely related to the environment I am in. 

My schizophrenia on the other hand, is disabling in and of itself. If I am unwell with schizophrenia the external environment has a far lesser impact on my wellbeing than my autism. Being psychotic in hospital or psychotic at home is mostly quite similar in terms of how disabled I am. 

These observations are based on something called the social model of disability. This looks at disability as being largely caused by society. For example, if almost everyone in the world was a wheelchair user, someone who walked would be in a disabled position as they would be walking into doorframes and bending over all the time. In a similar way, if everyone in the world was autistic, a neurotypical person would be disabled. 

The thing that gets me is that in order to access supports and funding, people need to demonstrate how disabled thy are. You get parents who have been raising their autistic kids to be proud of who they are and then they go into a funding meeting and ned to outline all the difficulties and challenges their kid has due apparently to their autism. This is very confusing for the kids and upsetting for the parents. It is hard to be empowered when you then need to go and prove how disabled you are! I think the long term solution to this issue is to remove the barriers and challenges for autistic people – and other neurodivergent people as well. This would mean we could shine and be our very own amazing autistic selves and not need to justify our existence by discussing our deficits and challenges. And while that possibly sounds like a pipe dream, I actually think it is possible.