Posted in Advocacy, autism

Ugly Autism

As always when talking about autism, I want to remind everyone that autism is not a mental illness. It is a type of neurodivergency; this basically means as autistic people our brains think and process information differently to the ‘norm’ that is expected in the world. However autistic people are more likely to suffer with mental health issues, largely in part to the fact that we are living in a world that isn’t built for us. I’ve talked about an overview on autism acceptance before – which you can read here – but today I wanted to discuss the complexity of an autistic experience and how as more people get involved in autism acceptance and advocacy (which is an amazing thing that I am thrilled to see!) we must keep in mind the spectrum of experiences and therefore the complexity of the necessary solutions.

Sometimes my autism isn’t pretty. I can still fit into the world as I am expected to, but that comes with effort which often goes unseen or under-appreciated. I can do this reasonably easily compared to some, and this is in part due to other aspects of my identity (such as my race) and the supportive people who surround me. You can view this as lucky or not; I think in a way it is unfortunate. It’s unfortunate that I have to manipulate the very essence of the way I think in order to fit into systems I often have no desire to engage with in the first place. I think it’s unfortunate that we can even frame this as ‘lucky’ because that just points to how painful life is for those who can’t, and how this pain is worse than the struggle of concealing one’s true self. While I do frame my autism as my superpower sometimes, I do not believe in the rhetoric that it is a blessing – this also lends to the rhetoric that it could be a tragedy when in reality it just is what it is. I frame it as my superpower personally because that helps me cope with its challenges, and because being autistic is so central to my identity that embracing it in a society that often doesn’t is radically self loving for me. My mental health issues are not the same as me being autistic, but since autism affects how I process everything they are of course intertwined and I have no doubt that being autistic in a world that isn’t has been part of how bad my mental illness has gotten and how confusing it has been to understand. In particular I think my early experiences of mental health issues (before they developed into a clear mood disorder of their own) were heavily intertwined with my autistic experience.

So why am I telling you all this? To give you the smallest cross-section of just one person’s autistic experience, and the complexity of even trying to begin to comprehend that experience, so that you might begin to grasp how neurodivergency and the way it is approached by society is not something that can be easily defined or explained. And that is essentially the point of this post. There are more conversations happening around neurodivergency now then ever before – and that is a joyous and wonderful thing! But these conversations cannot be dulled down to a single Instagram post, or a single profile of autism – which threatens to be the most easily palatable representation of autism. Think of how mental health awareness is sometimes boiled down to self-care, bosses offering a free yoga class to their employees, and pity for the people who can’t socialise but can still just about get through a days work. This kind of awareness fails to recognise or help those suffering in ways that are uncomfortable for us to hear about, or impede how they might function in the systems they are expected to – it doesn’t help the person who has to take a year off work, nor the person who has to call an ambulance because they are convinced they’re dying, nor the person who lashes out at others with angry words because they can’t deal with their inner turmoil. I don’t want a similar pattern to happen as we see more autistic and neurodivergent awareness and representation. We can’t afford to ignore the messy parts of autism that might make some people a bit uncomfortable, or the fact that many neurodivergent people can’t (or don’t want to) participate in traditional capitalist structures that aren’t set up to support them. As there is more awareness, we must show the full array of autistic experiences – from all races, with comorbid mental health issues, different traits, physically disabled autistic people etc etc.

Autism and neurodivergency can’t become something trendy, like a new kind of personality test for CEOs to try and enhance their team and their diversity. They just need to become tolerated, known, understood. Because neurodivergency isn’t always palatable; sometimes it’s messy and it’s different and we have to make sure we don’t run the risk of autistic and adhd people who can more easily fit into the societal expectations (and who want to, because not everyone does) getting ahead and heralded as some liberal caring symbol for employers – for example, while others continue to be ignored. 

Posted in Advocacy, autism

A Guide to Autism Awareness Month (By an Autistic Girl)

April is autism awareness month, so you might well come across information floating around about autism online. For many autistic people, especially autistic advocates, can find this month difficult or have mixed feelings around it – not all the information circulating will be correct or portray a positive narrative, and this can be frustrating, stigmatising, and exhausting to correct. So here is a short guide on how to navigate autism awareness month for autistics and neurotypicals (people who do not have autism and are not neurodivergent) alike:

The Ground Rules

Firstly, let’s lay some ground rules for autism awareness month – the stuff you really should know. When you read something about autism online, do not automatically assume it’s true. If it’s written by an autistic person, then it’s generally trustworthy. If it shows autism as a problem to be fixed, or a desperate life, then it’s not to be listened to. And if it comes from ‘Autism Speaks’ then completely ignore it (more on that later). Next, make sure you are not correcting autistic people on their own experience, or trying to speak over them. Instead, uplift autistic voices – and all autistic voices. We are as diverse as the world, and we all have value, so make sure you’re paying attention to LBGTQ autistics, Black autistics, non-verbal autistics, autistics with higher support needs… all of us! Finally, don’t use the #actuallyautistic hashtag if you’re not autistic, it’s a hashtag we use to find each other and to identify posts by autistic people.

Acceptance not Awareness

While becoming more aware of the diversity and lived experience of autistic people is amazing, and helps to de-stigmatise autism, it’s not enough. Furthermore, sometimes the idea of awareness can become a connotation of a problem that needs to be solved or cured, which autism is not. So during this month, you may see it called ‘autism acceptance month’ instead. That’s because what autistic people really need is acceptance. More than that we need to be accommodated and valued in society, because every single one of has worth no matter where our traits lie on the spectrum, and when accommodated to we can do so much. So please, make sure that this month you are also thinking about and working on your acceptance and accommodation of autistic people. If you want to read more about why I think autism is amazing, please read my post ‘Autism is My Superpower’ here.

All Year Round

The fact is that autistic people are always autistic – all year round. That means that you cannot only work on accepting autistic people during the month of April. Including us, accommodating us, appreciating us and loving us is a full time job. And it’s important, maybe even paramount, to note that accepting autistic people isn’t just about accepting those who have a diagnosis or are public about that diagnosis. Many of us can’t be open with our diagnosis, or are uncomfortable about being open with it (which is why we need your help to de-stigmatise autism). Many people don’t even know they are autistic. So what does that mean for you? It means accepting the weird kid who only talks about the same few topics or can’t make eye contact, and saying hello to them, regardless of what response you might get. It means not laughing at the way in which someone flaps their hand or the odd noises they make. It’s about being sensitive to the person who finds light and sound overstimulating. It means accommodating the quiet girl, even when she can’t talk at all. It means caring.

No Autism Speaks

You may have heard/ hear about Autism Speaks’ light it up blue campaign, supposedly in support of autistic people. However autism speaks have been hugely damaging to the autism community, portraying autism as a thing that destroys lives and families, and something that needs to be solved. They also do not help autistic people in a financial sense – only a tiny portion of their budget (I believe 4%) actually goes towards autistic people and their families, while their CEO receives an obnoxious amount. Furthermore, not one person on their board actually has autism, which is an outrageous sign that they do not listen to us. So instead of lighting it up blue, please light it up red, a way we are combating Autism Speaks, and use the rainbow infinity symbol instead of the blue puzzle piece of this organisation.

A Guide for The Autistics

This month might get overwhelming for you, especially if you are trying to correct information online or advocate a lot. So this is my reminder for us to check in with ourselves and allow ourselves time to rest and do what we enjoy as well. If you are feeling worn out maybe reach out to someone who knows you well also and ask them for a bit of extra support. You are under no obligation to do anything this month if you don’t want to. And maybe while everyone else is working on their acceptance of us, we can also try to accept ourselves. It’s something we can struggle with as autistic people. But we are so valid, and honestly really awesome.

Thank you so much for reading. If you have any questions please do drop them in the comments, and feel free to get in contact. Sending all my love and support!