A campaigner for Autistic rights, Kieran Rose has turned his passion for writing to good use, focusing on Advocacy and Acceptance for Autistic and Neurodiverse people, with his blog The Autistic Advocate. The freedom for Neurodiverse and Neurodivergent people to speak for themselves and be heard is paramount for Kieran, mostly due to the fact that he has spent his whole life immersed in Autistic life and culture as an actually Autistic person, with Autism diagnoses for much of his immediate and wider family; and now two Autistic children of his own.
Kieran lives in Durham, England, with his wife, Michelle, where they run their Marketing Consultancy: www.custardandbear.com (With a little help from their three children, Quinn, Albie and Olivia). The whole family all live in a happy bubble of Sensory overwhelm and underwhelm.
This week Kieran shared some of his personal experiences as an autistic individual as well as important advocacy tips for parents and families who live with or near autistic individuals.
On the “About” section of your website, you mention that you’ve spent a lifetime masking your autism, and only recently have you been able to “come to peace with myself and who I am and to allow myself to be Autistic in public.” What specifically were you trying to hide that you don’t concern yourself with anymore?
Generally all of me, absolutely all of me: Masking is about adding layers to your persona and physicality that hides the real you underneath. I’ve spent decades doing this, ultimately to protect myself.
Specific things though are suppressing my stimming, both physical and vocal, forcing myself to make the pretence of making eye contact, forcing myself through social interactions, hiding and/or suppressing periods of high anxiety, allowing myself to be touched and also forcing myself to touch people in ways that are expected, I could go on for days.
We Autistics can be tremendous actors, but we pay a tremendous cost for it. We learn from an early age that many of the things that make us feel comfortable make Neurotypical people uncomfortable. Our behaviours do not fit in with the social norms that make the Human world go round. Our behaviours actually cause hiccups in society, which prevent the smooth running of things. So we are isolated, excluded, viewed as broken or damaged. Cures are sought to fix us. Treatments devised to make us fit in. But the silly thing is: we never do fit in. We are the ones that are constantly sticking out like sore thumbs or end our lives because we can’t hide anymore.
We are made to be unhappy by society and made to pay for not being ‘normal’.
What about NT interactions is the most exhausting?
I could take this question in two ways:
Generally, social interactions are definitely the most exhausting part. Conversations, even planned-for ones suck the life out of me.
I’m selective Mute, but have now put so many support mechanisms in place to enable me to be able to bypass or re-direct my Mutism that even the simplest of interactions are utterly exhausting.
Social dynamics play a huge part of this: retaining the right script for certain situations, having back-up scripts for when a conversation goes wildly off course, having back-ups for backs-ups and holding all those things in your head and half the time it still goes in a direction you are not prepared for.
Then add in the sensory issues you are facing all through this – taking in and being aware of all the visual information, the auditory information, the smells, the touches, maybe the lights – the Autistic brain is focused on all of these things, all at once, consciously.
If you add all these things together, is it not understandable that we ‘get a bit tired’.
All these people that get so late in life undiagnosed are completely aware that this is happening and completely unaware why.
People who are diagnosed make ourselves go through this in an attempt to ‘fit in’.
Specifically, though, the interaction that is the most exhausting is the one where I have to justify my existence as an Autistic. Where I have to explain why my view is important, how it is that I can be a voice (one of many) for the Autistic Community. How I am not excluding ‘Low Functioning’ or ‘severe’ Autistics (Usually when I‘ve spent three hours explaining that Functioning labels are divisive and unrepresentative).
That specific interaction comes hand in hand with the Neurotypical person having the prejudice that I can speak, therefore am ‘not Autistic enough’, which is itself fuelled by a narrative of negativity, of broken and unfixable. You can’t be ‘X’ because society dictates ‘Y.’
If neurotypicals were more accepting of stimming, would this reduce the stress for autistic individuals?
Absolutely it would. It wouldn’t eradicate stress obviously, but if Stimming were more widely socially accepted it would allow Autistic people to allow stress to leech out of us through stimming, rather than having to suppress or redirect it in a way which is not physically and mentally soothing and therefore does little for us.
Stimming can be both a deliciously satisfying, pleasurable experience and also a way to reduce anxiety. The more we feel we have to suppress or redirect the Stims the more anxious we become, which again is suppressed and round and round it goes until we become overwhelmed and either Meltdown or Shutdown. Suppressing a Stim is NOT self-regulation; it is a form of self-harm.
A huge part of the lead-in for many mental health issues amongst Autistic people is Masking.
Suppressing Stims IS a huge part of Masking.
Society bullies us for being different, so forces us to Mask. We expend huge amounts of energy Masking and become exhausted and often depressed. Then society questions why we die early. It really isn’t rocket science, but nobody seems to want to hear it. Non Autistics have a great talent for sticking their fingers in their ears and going “La, la, la, la, la.”
How would you respond to neurotypical parents who disregard your advice since you appear “nothing like their children?” To those with claim they have to be their child’s main advocate because their child will never learn to self-advocate?
I wrote a tweet recently, which read: “This is so important, especially for those who do not understand why Functioning labels do not describe #ActuallyAutistic children and adults: Do not limit your children because of your own prejudice and lack of Autistic education.”
So many parents do not understand that Autistic people develop differently; they cannot see how I, for example, someone who now writes, uses social media and speaks publicly, was a selective Mute as a child (Sometimes still as an adult), was crippled by anxiety and would often spend days without speaking to anyone.
There seems to be a disconnect in the mind of many parents between their Autistic children and us as Autistic adults and much of it stems from the negative narrative of Autism. Autism is feared among society, and a lot of it stems from the language used to describe it. You can see it in the Media, Professional language, parental language, words like ‘suffering’ and ‘struggle’, ‘High and Low Functioning’, the separation of Autism from the person by ‘have’ and ‘with’, as though it is an associated disease rather than a Neurological difference.
Autism is ‘blamed’ for so much too. If someone has a co-morbid condition that affects their day-to-day living, they are called ‘severely Autistic’, when in actual fact, they are an ‘Autistic with a co-morbid condition that affects their day-to-day living.’ It may not roll off the tongue as succinctly, but it is factually correct – ‘severe’ Autism implies that the Autism is the problem.
The biggest factor in all of this is that it is driven by money. Autism charities rely on this negative narrative in order to keep generating funds, so governments are advised and lobbied accordingly. Autism professionals offer similar feedback because they have no jobs without a negative narrative. So they continue to push this legacy of bad behaviour, meltdowns, bad parenting and stigma, and whole industries are raised around treatments (ABA is a multi-million pound/dollar industry and is abhorred by Autistic people) not to mention ‘cures’.
It all has basis in the societal view that Autism is somehow wrong, rather than different.
The most common thing I hear is “You don’t speak for my child”, but actually, yes I do – as much as you do. I may not know your child personally and therefore can’t claim to know them as an individual, but I have an idea of why they behave the way they do, an insight into them that you, even as a parent, does not have.
Any parent that uses this phrase is baulking at the idea that someone other than them knows the inside of their child’s head and their behaviours better than them.
What mistakes do neurotypical autism advocates make?
Silencing, dismissing and speaking over Autistic voices.
Often Non-Autistic Autism Advocates trample all over the views of Autistic Advocates and that’s mostly related to your question earlier about the inability of many people to connect between an Autistic child and an Autistic adult.
The issue is that the views of those Neurotypical Autism Advocates are the ones showcased in articles, on Social Media, and in the News Media. Charities, with no Autistic voices on their boards or hierarchy (aside from the odd token member who only speaks the company line) are given preference publicly over Autistic-led organisations such as ASAN, or Autistic UK for example
The person best placed to talk about Autism, is an Autistic person. Someone who has experienced the emotions, the sensory overwhelm, the anxiety and fear and confusion, someone who has, by taking the difficult route, established a way of communicating those things. Things that, unless you have expressed them to the depths that we have, you cannot have any ability to understand what they mean, how they feel, or how exhausting they are.
This is not to say that non-Autistic views are unimportant, which is not the case at all, but, at the moment, the Autistic voice is currently the least important and most drowned out, when it should be the most important.
What’s the most important thing parents can do to help their child thrive with a positive autistic identity?
Be hyper-aware that your child is different and both encourage and teach them to embrace that. Learn as much as you can – not from text books, or self-important professionals, but from actual Autistic people who can take you step by step through their world. Learn about things Autistics know about and have dealt with such as Meltdowns, overwhelm, Burnout. Learn about why we do the things we do, how you can best help and support us.
Encourage them to not Mask, to be proud of who they are and not feel they have to hide it, despite what Society says. Help them to not be afraid, but to be strong. Be their Advocate but be aware that one day they WILL be able to advocate for themselves if you support them in that. A person who does not speak can and does communicate in a million other different ways.
I write and speak about my life so that parents of Autistic children can learn from the things that happened to me and learn how to navigate them in such a better way. My life has been a horror story at times, and I don’t want any Autistic child to have to go through what I did. It’s a guide on how not to live your life.
So many other Autistics do the same as me. Give over the deepest, most painful parts of our lives, so that Autistic children don’t have to experience them for themselves. We pay a high price for your children.
Please start listening.
Interested in hearing more from Kieran? Visit his website or follow him on social media:
https://www.facebook.com/theautisticadvocate/
https://twitter.com/KieranRose7 TheAutisticAdvocate@KieranRose7