Redefining the Autism Narrative: Part 2

This post is part 2 of redefining the autism narrative with two autistic self-advocates, Occupational Therapist Virginia Spielmann, the Executive Director of the STAR Institute in Colorado who is also an Expert Training Leader in the Developmental, Individual differences, Relationship-based (DIR) Model who recently completed her PhD in Infant and Early Childhood Development at Fielding University, and Kieran Rose of The Autistm Advocate, who is a published author, speaker, consultant, trainer, researcher, and neurodivergent educator who offers a regular online learning about understanding autistic experiences three times per year for the public, as well as training for organizations.

Last time, we spoke about going from a deficits-lens to a well-being and neurodiversity-affirming lens, thwarted expectations that society gives us, the horrible history of autism, recognizing trauma, the culture of ableism, The Social Model of Disability, the Double Empathy Problem, and focusing on changing the systems in place and finding support. This week we’re going into some of the specific experiences of autistics. We’ll talk about appreciating the autism experience and cover masking, the problems with the medical model of autism, monotropism, context and code switching, and more about enabling parents in their journey raising neurodiverse children.

Masking and Fawning

Many adult autistics have spent their lives masking at a great cost. Masking is a trauma response, Kieran says. It’s about fitting in and wanting to blend in when you look at the research, but Kieran says it’s about projecting an acceptable version of ourselves depending on who we’re with. There’s an aspect of human behaviour in there that everybody does, which is ‘context switching’, where you act differently around your parents versus when you are with your friends or work colleagues. But you have to add rocket fuel to that, Kieran explains, to understand how neurodivergent people–not just autistics–mask.

But it’s not just neurodivergent people. This is a marginalized behaviour. Any group that is marginalized has to adapt in order to survive, to make themselves appear less of what marginalizes them. Autistic people do this as well. This involves a lot of suppression: suppressing the way they communicate, behaviour, sensory responses, interests, and everything. On top of that, he continues, there can be elements of fawning which is about people pleasing. It’s about making other people feel more comfortable. These types of narratives can become problematic.

It starts in early childhood and tends to increase as you get older. If you have an autistic child who fawns and wants to people please, you can understand why there is a higher incidence of abuse among autistic children because they’re more inclined to do what people tell them to do because that pleases the other person. Behavioural narratives fit that because it’s about giving children stuff and the children wanting to please the people who are therapizing them. Their authenticity doesn’t exist anymore. It’s about the authenticity of what the other person wants to see.

It uses up massive amounts of energy and as the brain develops, it compartmentalizes the masking aspects of yourself so you are less aware of the masking behaviour and it becomes your normalized behaviour. It’s like you’re constantly projecting another version of yourself like a hologram of what’s successful to other people. The energy reserves that go into that are enormous. But because you completely disassociate from it, you don’t realize that all that energy is going into it. This leads to autistic burnout, regression and loss of skills, Kieran explains. These are common narratives for autistic people and are actually seen as part of ‘being autistic’, but they’re not; they’re part of a stigmatized, marginalized existence. 

The Medical Model Needs to Go

It’s so essential to explore for parents who have autistic children because we know autism is genetic and it runs in families. Many parents don’t know that they’re autistic, though, because of the narratives that autism only presents in a certain way and masking feeds that narrative. I added that there’s no blood test you can take to know if you are autistic or not and there’s such a spectrum. Kieran replies back that even that narrative of the ‘spectrum’ is problematic. All human beings are individuals that present in certain ways depending on a massive collection of things that go on in our lives that form our identities.

The spectrum is a medicalized view of being autistic because it suggests there are certain presentations of being autistic, which isn’t true. When we try to compartmentalized these things it’s a mess. Tick box therapies are geared towards a set of presentation of being autistic which doesn’t exist. Virginia says it goes back to the medical model of autism. She says if you go to the doctor and say you’re tired all the time and they say you have chronic fatigue syndrome, you think, “Yes, I just told you that.“

If you try all treatments and approaches they’ll say you’re resistant to treatment as if you’re too difficult a human. It’s such a medical way of seeing things which speaks to there being one right way to be human, Virginia says. This informs the design of many therapies for many developmental therapies. Masking is taught indirectly but also very explicitly when autistics are told to stop stimming or making noise to get the reward, which might be participating or they even might take away the things that regulate you.

Nonsense Goals

Virginia talks about the ridiculous goals that are set for autistic kids such as, “engaging in non-preferred tasks“. Who in the world would pay money to go to a therapy who would make them engage in non-preferred tasks? Yet we submit our autistic children to it all the time! She adds, “adjusting conversation topics to be socially acceptable“. Socially acceptable to whom? This comes back to the Double Empathy Problem. Whose convenience is this about?

Monotropism

We have individuals across the lifespan with intense interests who can show wonderful attention and achieve amazing things, but because we decide it’s a pathology, it gets called an autistic special interest. It comes down to deeply embedded ways of thinking about being human. Neurodivergent people challenge these norms the most and we really need them! I gave an example of how I tell stories with every detail and people always say, “Get to the point“. I recall going to see my first movie ever as a child and being asked how it was and describing it in great detail, only to be brushed off.

I make sure I take interest in what my son talks about when he goes on about something he loves because I remember how awful it felt to feel someone wasn’t interested in what I was talking about. I asked Kieran if this is monotropism and he said that yes, I described monotropic communication. Among autistic people, he explains, the intent of communication is a bit different. It’s around the transfer of knowledge and information. Generally in society, most people converse about things that lack substance. It’s social chit-chat. Autistic people tend to use monologuing and information exchange as communication which is about your sensory system and providing information.

The word monotropism describes ‘attention’, Kieran explains. The theory of monotropism, which derives from autistic people, comes from the use of attention tunnels. It’s not necessarily about special interests, but about what has your interest at any given moment. Your sensory system aligns to whatever you’re focused on in that moment, which is why transitions can be difficult. When all your senses are geared towards that thing and you’re asked to transition or something makes you have to pull away from it, it can be like pulling yourself out of a gravity well. It can be very dysregulating. 

These are the narratives we are dealing with, Kieran says, which also apply to those with Attention Deficit Hyperactivity Disorder (ADHD) as well where you have these attention tunnels and communicate in that similar way. When a non-neurodivergent person is on the receiving end of that communcation, because it’s not your natural communication style, you can get bored because you don’t hyper focus and can move your attention around to a lot of other things quite easily. That can become a problem for you, Kieran continues, and as a part of what’s dominant in society, you view your way as the right way.

This is why we have narratives around autistic children learning to take turns, Kieran explains, and take pauses in conversation for perspective taking. What you’re doing when you do that, though, is invalidating the child. You are showing that their communication style and need to pass on information when you’ve been asked a question is wrong, which makes the child feel bad, as in my example from my childhood. It can bring shame and stigmatization. It happens more as we get older so some stop communicating in that way because we have to and are told it’s the wrong thing to do.  

This is a narrative that wouldn’t be talked about if it weren’t for autistic people talking about it and other neurodivergent people talking about themselves, Kieran offers. It’s about things being pathologized by professionals because it’s been viewed externally and viewed as being wrong and needing to be changed. Virginia adds that one of the originators of monotropism in autism, Dr. Dinah Murray, recently passed away and her son wrote a wonderful tribute to her. He was raised with a healthy autism identity. Virginia says that monotropic communication can be considered a love language. If you ask her about the brain, human development, or Dungeons and Dragons, you’ll get an info dump from her!

Virginia says that the info dumping is connection, sharing, and joy. It’s a gift, she asserts. Kieran says that if I were around the right people, people wouldn’t get bored with my detailed story-telling. I laughed because I said I certainly enjoy listening to detailed stories or ‘info dumping’ from others around things I’m interested in and remember every detail that others don’t. Virginia jokes that every time she answers a question on this podcast, she is info dumping. Virginia’s special interest is the diversity in human development and human fourishing and she got a PhD in it because it was her special interest.  

Putting Supports in Place

In Virginia’s own diagnosis a mere 8 months ago, her diagnostician said that Virginia has developed such a supportive lifestyle for herself and that’s one of the reasons it hasn’t been painfully obvious to people aside from Kieran, she jokes. She adds that a few years ago, autistic friends that she has started assuming that she knew that she was autistic. She thought that she was just really good at connecting, which didn’t marry with her actual experiences in life of awkward social interactions in mainstream settings for most of her life. She started looking into a diagnosis when she reached burnout from not being able to say no to one of her monotropic interests. Virginia learned that she has to practice more self-compassion and self-care. 

Context and Code Switching

Virginia states that the maladaptive version of ‘context switching’, as mentioned by Kieran earlier, is ‘code switching’, which is what you have to do when you’re marginalized and have to fit in, so she’s trying to learn how to context switch and not code switch. She’s trying not to put her mask on and suppress as an act of self-care. Code switching is a term from linguistics, when you switch from languages in bilingual communities such as with you will speak your native language with your elders and switch with friends.

She adds that a part of her was never going to camouflage, such as dying her hair blue and get piercings to let others know that she’s not like them, whereas other pieces of her were shamed by peers and teachers, or misunderstood very badly such as by men because she was so intense that they assume she must mean things that she didn’t mean. It’s her act of self-compassion to start unpacking these pieces in her 40s with great friends like Kieran to help her on the way. 

Don’t Make Assumptions

What do we say to parents whose kids aren’t blending in and being misunderstood but who maybe stand out more because of their disabilities that are more visible, I asked Kieran, beyond accepting our kids for who they are and building on their strengths. Nobody knows the future, of course. Parents are fearful of not being around to support their children. We need to look at it in a positive sense as well, Kieran says. How a child presents when they’re 5 might not be how they present when they’re 50. We all grow up.

The power of monotropism is so incredible that we cannot make judgments about how we perceive people, even if they’re our children because outside of Kieran talking about autism, he barely speaks. Speaking is absolutely exhausting for him. He’s spent his life putting so many things in place that enable him to be able to talk when he has to, and he’s also situationally mute, which complicates things and makes it even more exhausting, he explains. When he doesn’t have to speak, he doesn’t. He communicates with his children mostly through text and his daughter and him draw to each other. If someone came to their home, it looks like they don’t interact with their kids, but they communicate all the time.

A lot of this is around stripping down expectations and living in the moment, right now. You can’t control tomorrow but you can make today positive. You can look for the positive in each moment, find the strengths and build on those strengths. Unfortunately, autistics are surrounded by systems that make their lives incredibly difficult, Kieran explains: education systems, care systems, health systems. Those systems are there to make things hard and punish them when they don’t do what’s expected. More importantly, we have people around us we can speak to who are like our children and can offer insight into our children.

Learning from Adult Autistic Advocates

Just because they may not be exactly like your child doesn’t mean that autistic adults’ experiences aren’t similar, relatable, or have value. There’s something to learn from everyone. It’s about respecting that, he says, respecting them, and respecting yourself, along with giving yourself the time to take it all in. It’s hard to take in what others tell you sometimes because parents have internalized ableism because of the conditioning that happens around us. It’s about time, patience, breathing, and taking what’s useful and using that.

I said I imagine a course that strips away all the myths and narratives and then matches parents with big brothers or sisters for their children to support them, because right now it’s mostly just therapy from professionals who aren’t autistic–or they just haven’t figured out they are yet, Virginia joked. Virginia says her and Kieran have tried to imagine what that course would look like for a long time, but you have to be careful about putting labour on the autistic adult who has already had enough trauma, she cautions. What format would minimize labour and maximize impact? As an autistic, it will be hard to not do it, but it will be costly, she adds.

Virginia gave an example of a mother who has a very competent boy, but whose son was given the label of the difficult child at school. She says that our kids don’t challenge these roles; they internalize them. The mother was so worried if he will read or write and if he’ll be ok. Virginia reassured her that he’ll be great, and nobody had ever told this to her before. We need more and more to find safe spaces for our children, Virginia asserts, because right now they are expensive. They need to be more accessible, and in an equitable way.

Thank you again to Kieran Rose and Dr. Virginia Spielmann for sharing their personal experiences with us and their expertise around these important advocacy issues. If you enjoyed and found it useful and helpful, please do share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Please note that the next podcast will be back in one month after a summer break with my family. I hope you’ll take the next few weeks to review some podcasts/blogs/videos you haven’t heard/read/watched yet!

Until next month, here’s to affecting autism through playful interactions!