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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.

Redefining the Autism Narrative: Part 2

by Affect Autism

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.

A lot of this conversation keeps coming back to this medical model where we’re  pathologizing differences through a deficit lens and if medicine can’t fix it, it’s unfixable, which is nonsense.

Dr. Virginia Spielmann

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.  

Monotropism is about attention. It’s about focusing on singular things at a given time and then having to really pull away from that thing and refocus on the next thing.

Kieran Rose, The Autism Advocate

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.

See the professional who sees your child not as someone who is trapped by autism, not as someone who needs to be fixed, but who sees and enjoys your child and their ideas right now. And find spaces for your child that are safe spaces where they will not be asked to mask, where they will be given accommodations, and multiple forms of communication options, and they can play for play’s sake, and they can just build social confidence instead of learning obscure and arbitrary ‘social skills’.

Dr. Virginia Spielmann

Kieran's course about reframing what autism is

Kieran offers a course three times each year called, “The Inside of Autism” for the general public that is not an ‘autism’ course, but is about re-establishing and re-organizing our thinking around what it means to be autism and how we can validate it rather than pathologize it. There’s a lot of Q & A time with autistic adults. Autistic people are in the discussions and can share freely. There are many autistic people creating these types of courses. We need more so more parents can access it. We need to learn all together. It’s not about teaching people about autism, but we can teach what it feels like to be autistic. Society doesn’t give access to autistic people. The little tiny changes can make huge differences.

This week's PRACTICE TIP:

This week try

For example:

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!

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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.

Redefining the Autism Narrative: Part 1

by Affect Autism

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. 

It’s not until now looking back that I realize, actually, that I just needed things to be a little bit different for me in order for me to be able to do those things, and if the world shifted just a tiny bit, just to make that little bit of difference, new doors would open up for me and things would become simpler, but as a child I didn’t have that.

Kieran Rose, The Autistic Advocate

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.

All the (autism myths) we learned previously (aren’t) productive at all. The diagnostic criteria aren’t a reflection of autistic people. They’re a reflection of distressed behaviours. And that’s what they’re looking for. 

Kieran Rose, The Autism Advocate

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.  

This week's PRACTICE TIP:

This week read a few blog posts from The Autistic Advocate, or another autistic advocate website such as Ann Memmott or the Thinking Person’s Guide to Autism.

For example: I suggest this blog post, entitled, “What world are we preparing for” or this one from The Autistic Advocate, or this one from Ann’s Autism Blog.

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 next week’s podcast 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!