Redefining the Autism Narrative: Part 1

This week we are redefining the autism narrative with returning guest, 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. Joining us is Kieran Rose, an autistic self-advocate, 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.

Kieran’s Background

Kieran was diagnosed at age 23, about 20 years ago. His eldest nephew had an ADHD and autism diagnosis and so he started reading an autism book that had a test in it. Kieran thought, “Hmm… this sounds like me.” His sister felt the same. He got diagnosed six months later. The only autism adult advocate around that he could find was Temple Grandin and he didn’t really identify with her so it just got put on the shelf as he went through burn-out and depression continued hitting barriers as he had before including relationship and communication problems. He kept thinking everything was wrong with him.

When his first son was born, he had a moment where his wife wasn’t home and he was left holding the baby at 3:00 AM. The baby stared and stared and him and they had a telepathic conversation, Kieran says. He knew that his son was just like him and if he didn’t figure himself out, he wouldn’t be a good enough Dad for him. This sent Kieran on a quest to find out everything about autism he could and bought ever book. But nothing he read rang true. They were all written by professionals and parents. None of it spoke to him, as an autistic person. It wasn’t until he found groups online run by autistic people that suddenly it felt like everybody was talking about him.

Since then, he’s soaked up every research paper he could find and read every book. He runs support groups now and has talked with thousands of autistic people across the world and does research. He’s in a place now where he feels that he can speak to the autistic experience and encapsulate the experience of many, while not talking for everybody. He says that gives him super privilege, but that’s how he’s gotten to where he is today. 

Prior to his Diagnosis

Prior to his diagnosis he always felt a bit out of synch, like he was moving in slow motion and everybody was in fast forward speed. He says that everybody seemed to know what to do, where to be, how to place their bodies, and know the right things to say. He always felt one step behind. It got him into issues and problems, he said, where he took blame for things that weren’t his fault because he couldn’t get his words out quick enough to describe what happened. He remembers having massive sensory issues and needing sensory information, as he understands now.

He was told, “It’s not that bad.” “Get over it.” “Act your age.” He was told these things so often that he stopped complaining about things and started internalizing things. From age 7 or 8 until his 20’s, he just internalized everything. He just assumed he was in fault when things went wrong. He would try to please others all the time and make them feel comfortable, but never quite succeeded. He felt like there was a wall inside him that he needed to get around or overcome. He couldn’t even pick up the phone and talk to people. Everyday things that others could do without effort were such a struggle for him. 

He just withdrew into himself and was very isolated, he said. He was bullied a lot and struggled to make friends. He had a perception of what friendship was, but his friends weren’t really friends. He had a very unhappy childhood. His eldest son is 12 and is diagnosed, along with his youngest. His middle child is neurodivergent, but there’s not yet a criteria that has been written up for him yet, Kieran laughs. He loves being a Dad and adores his children. They are a neurodivergent family, including his wife, and are together most of the time. Virginia thanked Kieran for being so brave, personal, and vulnerable. It’s a gift to anyone who gets to listen to his story, she offers.

Inclusion and Diversity

Virginia says that it’s the sad truth that a lot of times in history we’ve avoided supporting our children because we fear that getting a diagnosis will do them a disservice. It’s the idea that if someone can cope and endure school, they should, and if they can’t, pursue a diagnosis and that’s worse news. That time of thinking has come and gone, she asserts. We now value inclusion and diversity in every environment. Schools, by design, are floored though, because there’s no homogenous classroom where every child has the same environmental and learning needs. It makes her think about what school and childhood should look like. Different learners need different supports and this will be to everyone’s benefit going forward.

The majority of schools are nowhere near there, I offer. There’s still such a culture of compliance and getting through curriculum. Behavioural approaches are still the norm and there’s still no understanding of individual differences and profiles. The pandemic has really opened up things for minority groups around race, gender identity, and disability. The conversation is now open to respect everyone. Virginia replies that the pandemic removed some of the systemic marginalization that was excluding or poorly including these groups by dismantling some systems, not on purpose. We’ve seen the difference some accommodations can make.

From a Deficit-Lens towards a Well-Being and Neurodiversity-Affirming Lens

She continues that we forget the adult that the child is going to become thinking instead of the convenience of the classroom we want now. It’s to the detriment of our communities that we do this, Virginia says. We must move away from the deficit lens towards a well-being and neurodiversity-affirming lens. There’s no negatives to it. There’s only positives. It will save money, support healing in our polarized communities, and build stronger communities. Many people are realizing we are truly in a paradigm shift.

Comparison to an Ideal

I mentioned that many parents of newly diagnosed children who attend the ICDL Parent Support Meetings are very overwhelmed because they are told all of these things that are wrong with their child. Their child isn’t functioning well in preschool, and the teachers are pointing out all these negative behaviours. In some cases the children are fine at home but then the problems started when they went to a preschool. In other cases, the challenges are great at home from smearing feces to banging their head against the wall, and injuring siblings and themselves. These things are so distressing to parents. And we’re hearing terrible things from society, being told about pseudoscientific cures.

At the other extreme, we have autistic self-advocates telling us that autism is just a difference, not a disorder, and that many people in history were autistic and made great contributions to society. I try to be that bridge for parents on that journey who have to accept the child they have to supporting the child in the best way they can, respecting their individual differences. And I imagine most self-advocates don’t like to hear parents complaining about the difficulties of raising an autistic child, and rightly so! It’s awful to hear that it was so hard to raise someone like you. Kieran talks about internalizing these messages which damages self-esteem and self-worth. I asked Kieran what he can offer to parents who are in this challenging process.

Kieran says this is such a complicated question because there’s so many different narratives involved. Western society gives us expectations about how we have to live our lives and the milestones we need to hit during our lives. We’ve been conditioned that these are the things we have to do. Systems have been built around these expectations. So when someone comes along who isn’t going to go through these steps, it can cause fear, concern, and anger. We worry about the future. It’s a scary time, Kieran acknowledges, even though he didn’t experience this.

Kieran came in knowing about himself so his children’s diagnoses were never a negative for him. He looks at it like there were things that happened to him that weren’t great, but he’ll do his best to make sure they won’t happen to his children. He came from a place of positivity. On the other hand, most people you would ask only know about the myths and negatives about autism. He wants to erase that from their minds and talk about the good stuff.

The Disgusting History of Autism

People characterize autistics as those who rock, don’t speak, and have behavioural problems. This comes from a hundred years of disgusting autism history which came from a small cohort of white boys who acted in a certain way. It’s developed on and the narratives on behaviour all came from external perspectives. Kieran starts with the disgusting history of autism in his training courses in order to be able to wipe away these myths. Typically when parents seek a diagnosis, it’s usually when some kind of crisis has occurred where the child isn’t able to manage so all of these things come bursting out. This is usually because of connecting co-occurring conditions. There’s so much to pick apart there.

Building on Strengths

Kieran says this is a slow process for everybody. It’s about recognizing that our expectations are wrong. We expect these ideal children–whatever that looks like–because we are conditioned to think this way. Instead let’s look at what we have now and what strengths we have. What strengths does this person bring and how can we build on them? Let’s not look at negatives. What kind of joy does this person bring to my life? What are the good things we can focus on? Then everything starts to fall into place and we can take on new narratives.

Recognizing Trauma

Some autistic people have disabilities that make life a lot harder and more complicated. Some are disabled in other ways that aren’t as complicated, but are still massively challenging, he says. What’s wrong with that? When we start unpicking these things gently and softly, we start getting where we need to be. But, he cautions, we need to be aware that most autistics are carrying a lot of trauma. He has yet to meet an autistic that doesn’t have CPTSD (complex post traumatic stress disorder) in some shape or form. 

Autistics have had constant invalidation in life and have masked for most of their life. They have had to live life superficially. They’ve conditioned themselves to forget and not experience the trauma, and instead shove it all down and internalize it because it’s shamed so much. Kieran asks parents to recognize that the people they need advice from have lived with this shame and internalized ableism and are working through it themselves, so the things you say as a parent are going to be triggering to them. Parents are being traumatized too, so it’s about supporting each other in this process.

The Culture of Ableism and CPTSD

I asked Virginia to define ableism. It’s a narrative that’s embedded in most cultures that there is a very narrow, correct way to be human and to function as a human. It’s generally refers to your mobility–being able to walk without assistance, your cognitive style being inside the bell curve so you have mainstream cognitive functions and social styles. The ableist narrative is embedded in our media, education systems, and health care systems and it’s decades old. Some of the first groups to challenge it were the deaf culture groups who said they have their own valid way of connecting that they are happy with. There are Down Syndrome groups that challenge these stereotypes as well and many others, she explains.

Ableism is an archaic and out-dated way of thinking, but is so deeply embedded in our language, environmental and education design. It’s a bit like a white person saying, “I’m not racist.” There’s probably something you need to examine in your experience. Ableism is insidious in a similar way, even if they’re not the same. A lot of it is not conscious. CPTSD is Complex Post Traumatic Stress disorder that is accumulated stress has not occurred from one acute event or from combat, but from these other developmental or sensory trauma, thwarted belonging and so on. 

CPTSD about being triggered in the present by an emotional memory that is usually subconscious and might not have anything to do with what is happening in the present. Virginia adds that it might make you dysregulated or defensive and you might attribute it to something that’s just happened but it has many more layers. She recommends Dr. Bruce Perry and Oprah Winfrey’s book, What Happened to You on the topic.

The Social Model of Disability

Virginia thinks that the Social Model of Disability is a great framework to break this huge topic down into pieces. It’s about the majority of a disability experience not being the fault or responsibility of the individual, but rather due to the structure, narrative, culture, and environment in which they exist. So if you think about the diagnostic report a family receives, let’s think about how it’s being presented, she continues. They’re using age norms even though autistic children have different developmental trajectories. What’s the purpose of the report? Is it because we want the child to catch up to be in a mainstream classroom or is it because this child is distressed and we want to support them on their journey to self-actualization, Virginia asks.

The language we use and the way the reports are written, Virginia continues, and the way the standardized assessment are designed are pretty questionable. Diminished flourishing and well-being might be the fault of the society and culture rather than the child whose trajectory is different. Of course we want to mitigate suffering. We don’t want our children to be terrified at the sound of the toilet or for touch to be physically painful, she explains, but we don’t want them to be told they’re deficient over and over again and for the doctor to be talking about the child with Mum while the child is there, and we’re assuming they don’t get it because they are non speaking.

How do we make this palatable for families early on their journey by breaking it down into small pieces and get in there before they hear the “Welcome to Holland” grief story and the stages of grief, Virginia wonders. I shared my story of getting a report about my son being difficult to assess in a developmental assessment and letting them know the problem with that. It’s so degrading implying that my son was the difficult person when their assessments were so meaningless and unimportant aside from comparing him to arbitrary age norms that don’t apply to his developmental trajectory.

The Double Empathy Problem

Kieran says that the Double Empathy Problem encapsulates everything we’ve been talking about. Nothing has been talked about from an autistic perspective. The tools and knowledge the professionals have are faulty. So many autistic advocates are coming forward and challenging the narratives, which a lot of professionals don’t like. It’s hard for parents because they’ve been conditioned to trust the professionals who have less information than the people they are talking about. The professionals have been educated in a very restrictive way and aren’t aware of a lot of things in the field that has changed in the past 20 years.

Challenging the Systems in Place and Finding Support

Virginia suggests that we need to decolonize health care to get to a point where it can be altruistic and be about the well-being of the individual. There’s a huge, deeper work that needs to be done and simultaneously, we need to figure out how to provide the people who are ready go on this alternative journey the tools to challenge the systems within which they exist, find communities that support them, and provide their children with the support and care that will help them thrive versus survive and tolerate and comply.

There’s so much information and misinformation out there for parents so it’s so hard to know what to trust. Kieran says this is about applying critical thought. Before he makes any decisions about or for his children, or forms any ideas about them, he asks if it is enabling and empowering, is it going to engender autonomy in them, and will it help them be authentic? Will it help them become well-rounded adults who can make decisions for themselves, who will need support in a lot of ways? As long as they have choice and are autonomous around the support they need for their disabilities, that’s ok.

A lot of people think that independence is about doing everything yourself, but it is rather about being in control over situations including over who helps you and how that help happens and having independence around these choices. From a parental perspective, we need to apply critical thought about whether it will be useful for them as an authentic person, not whether it will normalize them, make them more productive in society, or live up to your expectations. None of that is relevant. It’s about their autonomy and authenticity. This is where you get to empowering your children. We’re bringing up adults whom we want to have boundaries, and who can communicate their own needs and advocate for themselves.  

I hope you enjoyed Part 1 of this two-part podcast with Kieran Rose and Dr. Virginia Spielmann. If you 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. Also stay tuned for Part 2 where we’ll cover such topics as 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.

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