Good Intentions Creating Unseen Stigma

by Affect Autism

This Week’s Guest

Kieran Rose, an autistic self-advocate, published author, speaker, consultant, trainer, researcher, and neurodivergent educator joins us this week to discuss a number of topics around neurodiversity. He offers a regular online learning about understanding autistic experiences three times per year for the public, as well as offering training for organizations. Today we will cover the topics of functioning labels, theory of mind–which I’ve done a podcast on before–and good intentions of autism providers who are or aren’t neurodivergent themselves.

Kieran was my guest on a two-part podcast last year with Dr. Virginia Spielmann where we discussed Kieran’s history of being diagnosed at age 23 and all he went through before and since, inclusion and diversity, the deficit lens of autism, neurodiversity-affirming supports, autism myths, the history of autism and its false narrative, building on strengths, recognizing trauma, ableism, the social and medical models of disability, Double Empathy, masking and fawning, nonsense goals that providers set for our children, monotropism, context and code switching, and learning from autistic self-advocates.

Bonus Insights

Functioning Labels: ‘Low functioning’

People will often ask me if my son is low functioning or high functioning when they hear my son is autistic. My understanding from reading self-advocates on twitter, and from hearing Kieran and others speak is that when people say ‘low functioning’ they’re talking about having a child who doesn’t ‘function’ like neurotypical children do. They struggle with transitions, they won’t eat or sleep, they scream and yell, they don’t play with toys but knock things over, and sometimes they have extreme tantrums and may injure themselves by banging their head against the wall, for instance or are violent towards others.

Especially with non speaking autistics, this label is used, Kieran explains, and the problem with that is that it assumes an intellectual disability as well and that they don’t know what’s happening. Often they are very aware but can’t communicate with us. A lot of this is around presumption and assumption, Kieran says, as we look from the outside observing and making (hopefully) best guesses. What we have to tease out here, Kieran adds, is what we mean by ‘low functioning’. What is the person using that label’s understanding of autism?

If we are using ‘autism’ as an umbrella term for it and everything co-occurring with it, Kieran says, then perhaps there’s some reason to that label. But if you’re looking at autism as a neurological difference or a neurotype, there isn’t a single autism person in the world who doesn’t have co-occurring conditions, he explains. If you tease these things apart when looking at the person you are labelling as ‘low functioning’, what you are actually seeing is an autistic person with lots of other things going on which might have nothing to do with being autistic. 

They might have a physical disability, epilepsy, apraxia, extreme dyspraxia or any number of other things, Kieran explains. Kieran has identified over 80 co-occurring conditions and there are more. When there are many things going on, is it fair to say that this person is a ‘low functioning autistic’ or is it reasonable to say that this is an autistic person with lots of disabilites and other neurodivergences, Kieran asks? What’s a better way of looking at it?

When we tease these things out, you can see there are many ways these people can be supported in positive ways, but when you aren’t teasing these things out, and just say they have ‘low functioning autism’, you’re just basically discarding them with an umbrella label that invalidates who they are, Kieran shares. You don’t explore what’s going on for them, and then expect challenging behaviour, so other horrible narratives that roll out of that. In actual fact, he adds, if you enable their communication in a positive way such as sign or an AAC device, you can tease out what causes them frustration or pain.

A Case of Misunderstanding

Kieran was hosting a conference at the STAR Institute a few years ago where a guest was a self-advocate with PECS as his only form of communication. He told the story about when he was young. Someone had put on the Wiggles show. He was watching it intently, got very excited, and made all of the exciting actions. So, they started showing him the show all the time and bought him Wiggles clothes and lunch boxes, etc.

Later when he was about 15 and learned to communicate using Spell to Speak, one of the first things he said was, “F@$! the Wiggles!” He hated them! But he had apraxia and dyspraxia. He had a disconnect between his brain and his body, so everyone observed him being happy and excited when in fact he was frustrated. There was an assumption that this was a ‘low-functioning’ person with no autonomy whom they made decisions for because he was incompetent, but he had valid feelings that he could express when he had appropriate supports to communicate.

‘Low functioning’ Stigma

When we use a ‘low functioning’ label, we are presuming that the people we are talking about are incompetent with intellectual or learning disabilities, which are framed around IQ. IQ tests are inaccessible to many people, such as for people who don’t speak. You assume they’re not intelligent for the IQ test even though the test is inaccessible to them! Kieran adds that ‘low functioning’ is also not a clinical label at all! If you go to a doctor and use that term, and if they’re a good doctor, they will ask, “What does that mean?” It’s actually a meaningless label.

For a lay person it’s their way to try to connect and understand, I add, when they use this term. Will your child be able to be independent one day? Will your child be able to function in society? Are they ‘low functioning’? I never take that personally because I understand they don’t mean to be ignorant, then I’ll try to explain a bit about it. I’ll say that we don’t know what the future brings. Kieran says we can’t predict the future, but even if we could, and you know that your child won’t ever be independent, what does that really mean anyway, because none of us are truly ever independent.

It doesn’t mean their life won’t be fulfilling if they’re not fitting in with how other people say they should live their lives. Their lives will be fulfilling if they can live them as they want to. This is a better way to look at it, Kieran asserts. The biggest support is that with the right supports those who appear ‘low functioning’ can actually function quite well. But if you make the assumption that they can’t, you won’t even try to help them! Imagine how you would feel if you lost your ability to speak and move and can’t communicate. Imagine how frustrating it must have been for that boy to have to watch the Wiggles over and over again when he hated it!

Kieran also brings up the connection with speech. We have an assumption that people who can’t speak don’t have a level of intelligence. It’s all wrapped up in problematic ideas. IQ is not fixed in space or time, and you can change your IQ by studying for the test. We want to see people from a strengths-based lens rather than saying they’re broken and will be that way forever, Kieran offers.

Incomplete Measures of Intelligence

I mentioned a recent book by Psychologist Robert Sternberg, Adaptive Intelligence, that discusses how to replace our understanding of intelligence and how our world will be saved by valuing everyone’s unique forms of intelligence. His former grad student, Scott Barry Kaufman, who does the Psychology Podcast interviewed Todd Rose about intelligence and how the way IQ is measured doesn’t work for schools. Let’s look at everybody’s strengths. How long will it take for education to incorporate that because people like Alfie Kohn have been saying it for years. 

Kieran says that having academic ability was set up by people who had academic ability and it excludes everybody else. There’s so many talents that other people have.

The low functioning presumes incompetence and the high functioning dismisses need.

Kieran Rose, Autistic Advocate

Functioning Labels: ‘High functioning’

‘High functioning’ has a similar problem. Kids who were diagnosed with Asberger’s who are intelligent, can speak, and function in society are considered ‘high functioning’. This label assumes they’re fine and ignores the disabilities they actually have. It’s not fair to dismiss the disabilities they have because they also have support needs, Kieran explains. 

There are a lot behind the scenes that you don’t see that causes you to make assumptions. Because someone doesn’t have a co-occurring physical disability, then you make assumptions because you see them visibly doing things that other people do all the time. 

But that doesn’t mean that they do them all the time, or successfully do them all the time, and that’s the big difference between the assumptions about someone you see as ‘high functioning’ and the reality of what’s really going on in their life.

Some people who are ‘high functioning’ call themselves ‘high functioning’ because others call him that. Even though they might have a very difficult life, they’re comparing themself to others depending on what the others thought about them and what the others’ assumptions were.

There’s a stigma that creates expectations that aren’t achievable. It often comes with academia. They ‘high functioning’ are often like swans furiously swimming underwater while looking so graceful above the water, Kieran explains.

Kieran as an example

A snapshot from the outside of Kieran’s life looks fine because he works, has a family, and can speak eloquently. But if you look inside, he’s had trauma throughout his life for various reasons, he tried to take his own life on a number of occasions starting when he was 14, had a drug addiction, had trouble forming relationships, was completely lost in the formative years of his life, had trouble connecting with anybody, goes through massive periods where he doesn’t speak, he shut down very regularly (as opposed to melt down, which are far more complex and dangerous because you shove things back inside). He struggled to access jobs and when he got a job in a school he was treated horribly there.

At home with his wife and three children, they rarely speak. Most of their communication is through text, even if they are in the same room. His youngest child and him communicate through drawing pictures. The family is mostly silent, looking like they aren’t communicating. From an external point of view it appears that there is some form of neglect.

There’s context to everything, which we have excluded for a very long time.

Kieran Rose, Autistic Advocate

Context

 

I asked Kieran with naive curiosity how these experiences of his life differ from someone who is neurotypical who struggled in school and got into similar trouble? He explains that indeed they might be neurodivergent and undiagnosed. There is a disproportionate number of neurodivergent people in prison, he states. A risk factor for being autistic is coming from a poor background, he adds. They had unmet needs and couldn’t conform in that environment because that’s not how their brains work. They were masking by projecting acceptability. People expect how you will behave, so you give them what they want. There are many explanations why there might be the disparity, Kieran says.

Kieran was the kind of person in school who hid under the table and hoped that nobody ever looked or spoke to him. Neurodivergent people can present in a number of different ways, he says. Autistic people can present in multiple different ways. There’s context for these things. Many people only focus on the stereotypical way that autistic people present. When you’re looking at a group made up of millions of people, who are all experiencing very, very similar and relatable things, then you know that there’s a thing going on there. It’s a response to the world around us and not being able to conform to it. That’s the differentiation, Kieran says.

Understanding Neurodivergence is in its Infancy

I offered that understanding neurodivergence really is in its infancy and really we want to be able to meet everybody’s needs and work from strengths, whether neurotypical or neurodivergent. I brought up how Dr. Kathy Platzman brought up in our podcast that she asked her father about how it was when he was in school. Back then, the child who couldn’t sit and focus in class would go work in the field and it wasn’t a big deal. That’s just what that child could do. I brought up how there’s so much research on how IQ tests really disadvantage minorities, for instance, and when Dr. Sternberg was in a position to expand the metrics of intelligence for college admissions, many more minorities qualified than did with traditional measures.

Internalizers and Externalizers

 

I gave the example of a ‘high functioning’ autistic person who has sound sensitivities and needs the accommodation of wearing headphones so they’re not overwhelmed by sound. Kieran says a better way of looking at it is through the lens of internalizers and externalizers. Some people, Kieran explains, visibly externalize their reaction to certain things whereas others internalize. Some have physical disabilities that impact them that means they are externally visible to people versus someone who internalizes something that is an invisible disability. It’s making judgments when we make assumptions.

Value Judgments

 

When we say that someone is ‘low’ or ‘high functioning’ we are essentially asking what value they can contribute to society, Kieran asserts. It’s a monetary value label. What an awful way of looking at human beings, he states. We’re not going to meet your needs or dismiss you. We assume you are able to contribute more so therefore we’re going to put pressure on you to contribute more because you’re able and if you can’t that’s your fault. It’s a horrid way to look at human beings, he believes. We all have equal value regardless of what we have going on. These labels reflect capitalist values, he says.

I asked Kieran what people should say instead? He suggests saying, “an autistic person who has low or fewer support needs or one who has more support needs.” It’s a much gentler, non value-driven way of saying that my child has more or less needs, he states. It’s a neutral statement.

‘Developmental Delay’

 

I gave the example of my son who is 13 but is more like at the developmental stage of a neurotypical 6-year-old. If you look at the lens of a 13-year-old, then he appears to be very much behind and even have an intellectual disability. If you compare him to a 6-year-old, he’s not doing that bad and is more comparable. Many of our children are ‘developmentally delayed’, which is based on a neurotypical standard of neurotypical development. Kieran would say ‘developmentally different‘ rather than delayed.

‘Different’ is more neutral whereas ‘delayed’ has the implication that they’re slow or not as good as other people, he explains. ‘Delayed’ is a value-driven kind of term. If someone wants to know what that means, he continues, you can then explain that they’re good at this, and not so good at that. Other children of that age might be good at this but not as good at that. 

I mentioned that Dr. Gil Tippy works with many autistic adults and that he sees a common pattern of autistic boys who have that stereotypical path of receiving ABA therapy, reaching age 18 to 21, then sitting in their parents’ basements on screens, and then blooming in their 30s. But does it matter what timeline they’re on? They don’t need to go to university at 18 or at all. We want to support and promote development and they will come into their potential. We don’t need to pressure of the timeline. Kieran agrees completely.

As a human species, Kieran suggests, we are reconceptualizing what it means to be human. We are going for a real paradigm shift in terms of gender, race, disability, neurodiversity, etc. We are in our infancy of understanding ourselves. We are still in the mindset that things are fixed, but there is no one right way of doing things, he continues. There are multiple differences. This is where the neurodiversity paradigm is so important. There is diversity among human beings. We recognize it in terms of skin colour and surface things, but what about other differences such as our neurology?

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a monument to neurotypical people, Kieran states. If you don’t measure up to that you are told you have deficits. It’s so arrogant, Kieran believes.

Good Intentions of Autism Providers

 

Kieran and I are both against Applied Behaviour Analysis for many reasons. It’s like training an animal, you’re only working on the outside behaviour, completely ignoring what’s going on inside the child and accommodations that might be required, and just expecting performance and compliance. It can be abusive at its worst, and at its best you have a wonderful, loving person who’s trying to help the person function and through the relationship the person gets used to the structure and routine and it’s not traumatic. 

Then we go to the new therapies that are now available. There’s many different options now. DIR/Floortime talks about where the child is developmentally, taking into account their individual differences including their sensory profile, their family situation, their history, etc. and the relationship where they need to feel safe with whom you’re with. This type of model is at the forefront of being the most neurodiversity affirming because they are respecting that, listening to the voice of self-advocates, listening to the Autistic Self Advocacy Network (ASAN), and employing self-advocates.

There can be strife between autistic advocates and parents, Kieran begins his response. There’s a book awaiting publication Meghan Ashburn (a parent) and Jules Edwards (a self advocate) called I Will Die on This Hill that talks about this, Kieran says. We all want the same thing. We want our kids to be happy and healthy, particularly for autistic children. But some of us are coming from very different places. And some of the self advocates like Kieran are parents as well. He sees is as a self-advocate also, and as a professional. 

Because the cultural narrative and media portrayal of autism is so negative, parents aren’t always ready to accept advice from autistic adults because they’re not like their child. But the advocates were once like your child and can relate to what they’re going through and thinking and feeling. I think it’s great that organizations like the Interdisciplinary Council on Development and Learning (ICDL), which I work for, is embracing neurodiversity-affirming care and listening to self advocates, even if the self advocates are self advocates that other self advocates don’t agree with. 

For instance, some self advocates have been ok with ABA in the past. Others condemn ABA no matter what with black and white thinking. This assumes that all ABA is the same and of course much of ABA today isn’t real ABA. From Kieran’s perspective, it’s not necessary to only listen to autistic people.

Good Providers

 

Kieran does have an issue with people who call themselves neurodiversity-affirming when they aren’t really. The best professionals Kieran knows are those who hold their hands up and ask for help and want to work together and continue to learn and do better. The best professionals Kieran knows are those who hold their hands up and ask for help and want to work together and continue to learn and do better. They are sitting uncomfortably all the time knowing they can do better.

There are many autistic people who can see things from other multiple perspectives and who can share their experiences that are very helpful, but there aren’t enough autistic professionals to go around. Non neurodivergent professionals working with neurodivergent people is not a problem as long as they have invested themselves in working with autistic people, being informed by autistic people, being neurodiversity-affirming, updating their knowledge by looking at cutting-edge new research, going on training courses from autistic people, etc. Work with professionals who are informed, Kieran urges.

Let’s describe the places that call themselves ‘neurodiversity-affirming’ but aren’t, I suggested to Kieran. There are a lot of BCBAs, for example, who are calling themselves neurodiversity-affirming, for example. Just because someone says something, doesn’t mean they are doing that, Kieran says. Kieran’s four pillars he works from are that anyone working with an autistic person needs to be invested in that person’s autonomy, agency, authenticity, and self-acceptance. If they aren’t, then they’re not neurodiversity-affirming and rather are applying neuro-normative standards and wanting to change behaviour. Also research what they will be doing in their services.

Theory of Mind

 

The myth is that autistics have a hard time knowing what’s going on in another person’s mind. My understanding is that ‘theory of mind’ is developmental. Little kids who are two-years-old can’t share toys because they haven’t yet developed theory of mind. They can comply if you demand sharing, but it’s not ‘theory of mind’. My son would go to the indoor playground where another child is building a tower and he would knock it down and laugh. I would say, “Oh, she’s so sad. You knocked down her tower” so he can wonder and think about what happened.

He recently kicked water from a puddle and soaked another kid at school, making the kid cry and be very upset. Dr. Carpente pointed out in the last podcast that this is trickier because many kids just play like that, and if you’re at the beach, it’s an acceptable playful behaviour. I added that in my son’s case, it is about his impulse control. But in this podcast with Dr. Virginia Spielmann, she pointed out that my son’s impulse control has developed quite a bit.

Kieran offers that even the professionals discussing ‘theory of mind’ can’t decide on what it is, so there’s no set definition of what it is. It is a concept, which is clear in the title, ‘theory’ of mind. It comes back to empathy which is being able to see things from another person’s perspective. It’s different than sympathy, which is feeling sorry for someone, which gets into emotions. There’s a difficulty there for some autistic people due to a number of different reasons whether it’s alexithymia developmental differences, or trauma. Accessing and recognizing emotions can be difficult due to environmental experiences. Nothing exists within a vacuum so when you consider theory of mind, you have to consider context.

Theory of Mind for autistic people stems back to Hans Asberger. Uta Firth translated his work and she was Simon Baron-Cohen’s supervisor. In Baron-Cohen’s work, he used the ‘Sally Ann’ test where a doll was put in a box and then autistic children would have to guess where Sally Ann is. There were only a few subjects and has since been debunked. Just because autistic children didn’t guess that Sally Ann was in the box and neurotypical children did doesn’t mean they don’t think as well, Kieran says. The doll could be anywhere in the room and just because it was there before doesn’t mean it has to be there again. Kieran pointed out that logically, he would think there’s a trick and not guess the obvious answer, himself.

There are now many studies that show that autistic people do have empathy. Autistic advocate, Dr. Damian Milton then came up with ‘Double Empathy‘ where we see that other people don’t have much empathy for autistic people because they are trying to normalize autistic people. Empathy goes both ways. There are plenty of non-autistic people who don’t have theory of mind, as well. Theory of Mind is a theory and just because Dr. Simon Baron-Cohen wrote a book on it and it’s been talked about a lot doesn’t mean that it is fact. It’s hugely problematic because it creates stigma. It was simply an idea and a concept, and not truth. It’s a really problematic narrative, Kieran believes.

This week’s PRACTICE TIP:

This week let’s think about the stigma we place on our children by under estimating their abilities, ignoring their need for accommodation, or dismissing the needs they do have.

For example: Is your child non speaking and you assume they don’t understand what people are talking about? Are you providing them with a means to communicate rather than waiting for verbal language? Does your child struggle even though they can succeed in school? How can you support their needs that make success difficult for them?

A huge thanks to Kieran Rose for sharing his time with us to review some things that we say in society that cause unseen stigma around the negative autism narrative and for offering desirable alternatives. He will be back as a guest again soon to discuss more on these relevant topics! I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.

Until next time, here’s to choosing play and experiencing joy everyday!

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