The Autistic Spectrum (Part 2)
Intersectionality, questions and comments
Following on from a post I published in March this year, which you can read here I’m continuing to shine a light on autism, looking at a few more common myths, trying to separate fact from fiction. I’m open about being autistic and as such I’ve been making a note of all the comments made and questions that I’ve been asked in relation to my own experiences (some questions have really tested my emotional regulation and social interaction skills!). What I’ve noticed in the last 7 to 8 months since my previous post is that conversations around autism are constantly evolving, sometimes in a good way, and sometimes in a judgemental way. There are still so many barriers to understanding what is a complex condition, and it is my hope that by writing about the challenges and opening up the conversation, it will help to break them down.
Disclaimer: I’m not a doctor, health professional, or an expert in Autism Spectrum Condition or neurodiversity. But I am an expert on myself and therefore the information documented here is based on my own personal experiences of being autistic and the research that I have done based on these ongoing experiences. I am not speaking for all autistic people. My perspective is that of a cis-het, white, adult woman in her forties.
Autism and Intersectionality
A note about my own perspective. To expand on what I mentioned above in the disclaimer, I am a cis-het, white, adult woman. This is relevant because my experience of autism passes through this very specific lens. My own challenges of autism are very different compared to another autistic person who also faces discrimination because of their race and gender identity. Intersectionality is about how the mix of identities people have combine to create different modes of discrimination and privilege.
In a blog post for Young Minds charity, author Suzy Rowland reflects on her son’s experience as a Black, autistic young person. The article is a great read and you can find the full piece here. In it, Suzy talks about the fact that “autistic people face discrimination in a non-autistic world. Black autistic people face this and racial discrimination too.”. I have the privilege of being open about my own autism because I don’t have to contend with added discrimination from other intersecting identities — added discrimination which means that diagnosis and access to the right services is even harder; often denied or reduced.
If you’re interested learning more about autism in general, I would recommend seeking out stories from autistic people in under represented communities and from diverse backgrounds, otherwise you’ll never be getting the full picture.
You don’t look autistic, are you really?
I’m not sure why anyone would want to ask this. But ask it they have. My answer is always a counter question along the lines of “what does an autistic person look like?”. I’m comfortable with uncomfortable silences. There isn’t a ‘look’ to autism. We all look different in the same way that neurotypical people do. We don’t have a set style or an identifying physical feature. You wouldn’t know an autistic person just by looking at them. Most of us don’t wear badges either, so you’ll never know unless we communicate it to you.
Isn’t autism caused by poor parenting?
No. It’s not. Many experts believe that there are genetic factors. The National Autistic Society1 states:
Evidence suggests that autism may be genetic. Scientists have been attempting to identify which genes might be implicated in autism for some years. Autism is likely to have multiple genes responsible rather than a single gene. However, it is not caused by emotional deprivation or the way a person has been brought up.
Autism and ADHD seem really fashionable now. They never used to be. Isn’t it just another way to try and be trendy and different?
No. If only it was that simple and convenient to put on and take off an entirely different set of brain wiring in the way that you can with the latest must-have pair of trainers.
Giving people the benefit of the doubt, I like to think that by “trendy” they mean that neurodivergence as a whole is now a more mainstream part of the conversation, whereas it never used to be. I consider this to be a good thing because by talking about a subject that used to be taboo — and that is still shrouded in myths — it helps to break down barriers and increases understanding.
You don’t catch autism, and then it stays for a few years and then disappears. It’s a lifelong developmental disability which affects how people communicate and interact with the world. That brings immense challenges. Often these challenges look very different from person to person and may or may not be visible to others. There’s nothing fashionable about that.
A lot of people were misdiagnosed earlier in life or received a late diagnosis. As more of these experiences are discussed openly, the statistics change and cultural discourse evolves to include conditions such as autism. This also addresses the “everyone seems to be neurodivergent now” comment that I’ve recently heard. I think it’s really important and really great that autistic people are finally receiving help from the right type of specialist support services, so that they can function and thrive.
Isn’t autism caused by the MMR vaccine?
No. Autism is a developmental disorder that people are born with. There is no link between autism and vaccines. A lot of research has been devoted to this issue over the years and the results have comprehensively shown there is no evidence of any link between the MMR vaccine and autism2. There are many studies3 that have investigated this, and you can delve more here.
Autistic people don’t feel emotions
Autistic people do feel emotions, but they aren’t always expressed in a way that’s familiar to you. Emotional dysregulation is a common autistic trait. This means that the capacity to manage emotions can often be impaired. This can lead to meltdowns: when an autistic person becomes completely overwhelmed by their current situation and temporarily loses behavioural control — verbal or physical. Dysregulation can also lead to shutdowns which is another response to being completely overwhelmed, but results in a ‘switch off’. This can mean a partial or complete removal of themselves from the world around them, with minimal ability to engage with other people or the environment.
Doesn’t everyone mask?
According to Dr Hannah Belcher, author of Taking off the mask. Practical exercises to help understand and minimise the effects of autistic camouflaging masking is described in the following ways:
To ‘mask’ or to ‘camouflage’ means to hide or disguise parts of oneself in order to better fit in with those around you. It is an unconscious strategy all humans develop whilst growing up in order to connect with those around us.
Dr Belcher then goes on to say:
for us autistic folk the strategy is often much more ingrained and harmful to our wellbeing and health. Because our social norms are different to others around us, we often experience greater pressure to hide our true selves and to fit into that non-autistic culture. More often than not, we have to spend our entire lives hiding our traits and trying to fit in, even though the odds of appearing ‘non-autistic’ are against us.
Masking may involve suppressing certain behaviours we find soothing but that others think are ‘weird’, such as stimming or intense interests. It can also mean mimicking the behaviour of those around us, such as copying non-verbal behaviours, and developing complex social scripts to get by in social situations. With this comes a great need to be like others, and to avoid the prejudice and judgement that comes with being ‘different’.
When talking about the detrimental effects of masking, Dr Belcher describes what happens:
masking uses up vital resources that we can’t use in other areas of our lives. To put it simply, it is exhausting. I still find myself regularly battling autistic ‘burnt out’ and periods of mental health crisis from the strain of trying to adapt myself to live in a world that just isn’t adjusted for my way of thinking.
As with many other complex conditions there is so much more to say about autism. In a few months I will no doubt have more to add. But in the meantime, I hope you have found this helpful.
If you think this post could help someone else, please share it, it’s free to read. Thank you.
https://www.autism.org.uk/advice-and-guidance/what-is-autism/the-causes-of-autism
https://www.nhs.uk/conditions/vaccinations/mmr-vaccine/
http://vk.ovg.ox.ac.uk/vk/mmr-vaccine