Kristy Forbes, Flourishing with Acceptance

Originally aired at Reframing Autism’s 2021 Symposium on Autistic Flourishing: Acceptance, Authenticity, Autonomy.

Australian-based Autism and neurodiversity support specialist Kristy Forbes’ presentation explores some of the key concepts around Autism acceptance, including damaging narratives, supporting the individual, Autistic culture and lifestyle, Autistic identity and challenging internalised ableism.

Kristy’s work is informed by her extensive professional experience as an educator, as an integration aide to children with social, emotional and behavioural challenges, and as a childhood behavioural and family specialist. Her most valuable insights, however, come from lived experience as an Autistic individual. The presentation is essential viewing for Autistic individuals, parents of Autistic children and professionals who work with Autistic people.

Transcript

Hello. Welcome to Flourishing with Acceptance. I am Kristy Forbes. Today we will be talking about Autism as a flower, the spectrum, Autism narratives, supporting the individual, Autistic culture and lifestyle, exploration of Autistic identity and challenging internalised ableism.

So, my name again is Kristy Forbes. I am an Autism and neurodiversity support specialist. I am an educator. I’m a parent of Autistic children. I develop and deliver programs for Autistic individuals, their families, educators and allied health professionals. And I create principled spaces for Autistic people and their families that are grounded in Autistic identity and exploration of our culture as Autistic families. Most importantly, I am Autistic. I encourage you to keep an open mind and let go of all you think you know about Autism in order to be open to a new experience today.

You will notice that I refer to myself as Autistic. This is known as identity-first language. So, for me Autism is not separate from who I am. It’s not a small part of who I am. It is central to my being. And this means that being Autistic, my Autism influences everything about me: my neurobiology, my nervous systems, the way I process my environment, the foods I choose, the way I sleep, how often and how much, the way I think and feel, the … just everything about me is influenced by my being Autistic.

So, I’d like to talk about Autism in comparison to a flower in a garden. All flowers start out as seedlings, and it takes time to know the species and the needs of the individual plant. Some people will be expert at being able to identify particular species of flowers and some people will know before the seedling starts to sprout what kind of flower they’re about to have the opportunity to meet. But most people won’t know. Most people may look on from the outside and make judgements and presumptions about what type of flower it is. They might smell the petal; they might have a look at how often it thrives and in what seasons, what temperatures, how often it needs to be watered. Many people will have gardens and not know what kind of flowers they have. But they’ll do their best to keep them alive. We don’t perceive a daisy to be a disordered rose. We embrace the daisy as it is.

Some flowers do really well when nurtured inside the pot, and some do well when planted in the ground. In fact, some flowers, if you left them in the pot, they would outgrow the pot, and if they weren’t moved and popped into a garden, into the soil, they may not flourish. Some require different types of soil to ground themselves in. Some need to be watered more often than others. Some require more sun, and some thrive without any. Some flowers thrive in different seasons.

When our flowers aren’t thriving, we change the environment around the flower to be more appropriate before it truly settles its roots deeply and is grounded. We don’t change the flower; we experiment with the soil, with the temperature, with the season, with the water. Every flower’s needs change with each season. It will have seasons when it thrives and seasons when it needs to be pruned back or treated differently because it needs more nurturing during that time. When a flower has peaked or grown to what we perceive as its best potential, we tend to cut it off at its stem and place it in a vase for all to see. However, its lifespan is then limited.

So let’s talk about the spectrum. According to the DSM, Autism is described as autism spectrum disorder. Many people have an understanding of that spectrum as being a linear concept, where we have a straight line beginning at one end and finishing at the other. We’re talking about people understanding that there are lower functioning or severely Autistic people at one end, mildly Autistic or higher functioning people at the other end, and there doesn’t ever seem to be much in between. I’m not hearing a lot of people talking about what belongs in between the lower end and the higher end. So, let’s take another look at the spectrum and have a different understanding if we can.

Inside the Autistic community, we talk about the spectum being more like a beautiful array of colours, of communication, of sensory profiles, of skill sets, of challenges and if we’re talking about flowers, let’s think about the spectrum as a garden. So, we take bits and pieces from all over the garden bed which makes up our Autistic expression. It is not linear. It does not indicate levels of functioning. It’s a beautiful array of luminous qualities, skill sets and challenges. But what’s important to understand is that those challenges and areas of required supports fluctuate from moment to moment, from day to day across the Autistic person’s lifespan.

So, when a person is identified as Autistic or diagnosed according to the DSM, more often than not it’s because they’ve checked off a set of criteria that indicates challenges or differences. These are seen as deficits when they are pathologised or according to the medical model of Autism. But that model of Autism is more often than not rooted in an Autistic expression of a person who has not been supported, accommodated or understood. It’s often a person who is Autistic but in distress or perhaps having co-occuring conditions or a background of trauma or struggle. It is possible to be Autistic and for our Autistic expression to not be as obvious as many people would expect. So people have a hard time understanding that a person like me can be Autistic, because of the way we present today. But we always have a backstory, and for somebody like me, many of my challenges are internalised because I have learned to mask.

Masking is when an Autistic person mimics, learns, observes how to be in the world. We watch people’s body language and hear their tone of voice. We learn about gender stereotypes and how we are expected to show up in the world and we follow those like a rulebook. So, sometimes you will see an Autistic person and they may appear to be well adapted, fitting in really well, well socialised, coping with life, but for many of us it hasn’t been safe to be honest with ourselves or with others about our challenges or our disability, so it may take until adulthood for us to actually start speaking about these and seeking appropriate supports.

Sometimes adults are diagnosed in adulthood because our masking has been so insidious that we fool ourselves into believing that we are really okay, that we don’t need to be supported but that we are inherently flawed. This can often be a combination of internalised ableism and the messaging that we receive from society, that we observe, starting in school. As early as early childhood, we see others bullied when they’re different, so that adds to us really investing our time and energy into masking.

So, let’s have a look at those Autism narratives that we’re talking about. The first narrative and the most common narrative is the medical disorder narrative. When a family has a child who is identified Autistic or diagnosed, more often than not that initiation process is that they will be exposed to textbook Autism, better known as pathology Autism, or medical disorder narrative. It’s usually based on the person having a profile of deficits and needing to be fixed and changed. It’s also based on a person being inherently, organically and neurobiologically flawed in comparison to neuronormativity or a non-autistic person. Also, under the medical disorder framework, we are othered and considered less than, which is a form of ableism.

The second narrative is identity and culture, which is what we’re talking about today. So, understanding Autism as a part of neurodiversity. Neurodiversity, “neuro”, meaning the brain and nervous systems, “diversity”, meaning a mixture of everybody and every type of brain and nervous system. That’s to simplify it. But when we understand Autism as a naturally occurring variation of human being, we can appreciate and respect that there is an identity and culture that comes along with being Autistic. When we think about biodiversity it appears that the human race has a really challenging time appreciating that we are all different and we all need different things. And we seem to be the only species on the planet that struggles with this. Animals, as an example, can absolutely learn to live together despite and actually not despite, but because of their differences their environments often flourish. The same as flora which is what we’re focusing on today. Autism or neurodivergence as a birthright.

So when we look at the Autistic person, it typically begins in childhood that an Autistic person, having been identified or diagnosed Autistic, we go in there almost instantly, worrying about their future, projecting into their outcomes as adults and forgetting to live in the moment and enjoy our children as they are, now. We tend to be encouraged to be so focused on our Autistic children’s future that we completely miss who they are in the here and now.

So, let’s have a look at disorder versus disability. So, the social model of disability is really important. Firstly I want to say that as an Autistic person I completely reject the notion that I am disordered. I steer clear of terminology such as ASD or autism spectrum disorder when referring to myself or my neurokin, others who are Autistic as well. I do this as a sign of respect to myself and others, because I’m avoiding calling people disordered. Even though it may be what textbooks say about me, I have the right to choose how I show up in the world and how I identify, and I reject the idea that I am a disorder. Am I disabled, however? Yes, absolutely. Is Autism a disability? One hundred per cent. Under the social model of disability, what we’re looking at is how well supported, understood and accommodated an Autistic person is by their environment and others around them.

An example of the social model of disability is for an Autistic person, being in a shopping centre and having the lights dimmed and the music turned down. That is one example of so many. In comparison to the medical model, which places the responsiblity of disability solely with the individual. So, we might say, okay, you’re Autistic, but you need to accommodate yourself. So, if you’re going to go to the shopping centre wear headphones, go at a particular time of day when it’s quieter, which many of us are really accustomed to doing anyway. Understanding that co-occurring conditions are not Autism or just a part of being Autistic. So, examples of that may be anxiety or gastrointestinal distress or having mental illness or depression. These things are not just a part of being Autistic, they are co-occurring conditions, which means that they are really common conditions that Autistic people have or can develop and often they are a result of not being well supported, not having our support needs identified, according to the unique individual.

And again, disability as a naturally occurring variation of human. So there are so many forms of disability in the world, and when we think about Autism specifically, it’s interesting to consider that there are thousands and thousands and thousands of Autistic people in the world, whether they’re identified or not, and then to continue to consider Autistic people as disordered or deficit based seems really odd to me, because we are a population of people that share commonalities, and although we may share commonalities that tend to be viewed as deficits, for us, more often than not, when those challenges are addressed and supported we have the ability to thrive. Hence, understanding the difference between “treating” Autism and supporting the individual. When families again have a child who is identified or diagnosed Autistic when many of us are not identified Autistic until later in life, such as myself, sometimes the only understanding or information that we’ve been exposed to is that we need “treatment”.

So when we talk about early intervention, sometimes the word “intervention” can be quite alarmist for people who are new to the idea of being Autistic or raising Autistic children. The whole point of any kind of intervention or therapy or support is to improve the quality of life for the individual. It is not to overcome being Autistic. It is not to treat being Autistic. Being Autistic in itself is not a problem. It is not a challenge, but it is important to focus on the individual, and knowing that we have fluctuating support needs, so we will not have the same needs in adulthood that we have in childhood. We may not have the same needs next week that we have this week.

Also understanding that there is often this idea that because we’re Autistic we have this generic framework of supports applied to us, which can be a speech pathologist, an occupational therapist, a psychologist and maybe some other form of therapy. But there is every possibility that we may not need all of those things, so coming back to the understanding that we support the individual based on their needs in any given moment. There are wonderful therapies and wonderful supports available, but there’s no point immersing ourselves or our children in those therapies if they are not necessary.

So, avoiding applying a generic framework. Using interests as aspirations not economy and not for reward or punishment. So, there are therapies that will encourage us to focus on our children’s interests and use them to encourage the child to be compliant with what we want them to achieve or be or skills we want them to develop. It’s not okay to use our children’s or have our own interests used as a commodity. Using those interests to assist our children or to help ourselves find our Autistic peers, our community, is more helpful than anything. So, immersing ourselves in our interests can actually lead us to our peer networks. Understanding that there are developmental differences. There’s no secret about that for Autistic folks. However, something happens when we’re children. We have what’s called “red flags” – again very alarmist and not necessary. When children who are not identified as Autistic, so non-autistic children, take a little longer to reach their milestones, we seem to be okay with that. We sit around and we encourage each other and we say, you know, “It’s okay; children, they get there in their own time. My little person didn’t walk until they were 15 months and that’s okay. They’ll catch up.” But when we apply the word Autism to a child we have red flags and panic if they’re not hitting milestones at the time that a typical child or a non-autistic child is expected to. We throw our arms up and we immerse or engage our child in therapies for that.

I want to encourage families to remember that Autistic folks, we are on our own timeline of development. We are going to take time to reach milestones, because for us there is so much going on in this incredibly engaging world. There’s so much to look at and to study and to smell and to hear and to feel energetically. It takes us so much time to process sensory input, to learn language, to watch human beings, the way that we have social dynamics. As Autistic folks, we are taking all of this stuff in all of the time. And so, taking that into account and understanding that we need additional processing time. We need additional time to develop, for our brains to develop, for our learning pathways to be discovered. This is so important.

So what is Autistic culture and lifestyle? Basically, it’s when we take our commonalities and we celebrate them, we embrace them. We understand that we do differently, not dysfunctionally. It is so easy for people to look in on Autistic culture and identity and compare it to non-autistic culture and identity or family life and to make the judgement that we live dysfunctionally, that our play is not functional play.

And when we think about that example for a moment, play comes from the imagination. Play comes from experimentation with our environment and the way we relate to our environment. And knowing that Autistic folks, we relate differently to people, places and things, our environment – we’re taking in all that information and making sense of it – there’s no such thing as functional or non-functional play. Our play is just as joyful, however it looks. So it’s important to not compare Autistic culture and lifestyle to non-autistic culture and lifestyle. It means that we may need less time in community. We may need to eat our foods differently. We may squish it in our hand before we eat it. Our engagement with technology may be different. We may need more screen time because it’s grounding for us, because it’s regulating, because it allows us to safely judge social situations and learn our place in social dynamics from a safe place. We have varying yet shared commonalities around psychosocial needs and preferences.

It’s taking the pressure off from attempting to be who we are not and improved mental health and wellbeing outcomes is often the result of Autistic culture and lifestyle. Exploration of Autistic identity and what that means, not in comparison to non-autistic people. It’s about embracing and understanding ourselves as Autistic individuals and knowing that we are perfectly whole Autistic people and not broken versions of non-autistic people. Recognising the importance of neurodivergent exploration that also challenges our internalised ableism.

So remembering that earlier I was talking about many Autistic folks internalising ableism. What that means is seeing ourselves as less than, seeing ourselves as broken or inherently flawed because of the messaging we’ve received from society. Am I really weak, lazy, oversensitive, blunt, intense, scattered or is it time to consider myself through a different lens – the lens of acceptance, a more loving, and kind, self-forgiving, self-compassionate lens of acceptance? Is a daisy a disordered rose with odd yellow petals that need to be morphed into another colour, texture and smell? How might a daisy cope if we threw fertiliser on it and pruned it back heavily with shears every winter? They’re beautiful, bright and able to be nurtured to thrive exactly as they are.

It’s important to understand communicative and social differences. An Autistic person is not necessarily a deficited version of somebody communicating or a disordered version. So there is a body of research growing that reflects that when Autistic people are in community we seldom struggle in communication with one another. We tend to understand one another intuitively and energetically. But when we come into contact with non-autistic people socially, there is an unspoken recognition of communication gaps that need to be bridged and more often than not, the responsibility for that bridge is given to the Autistic person to work harder at communicating with non-autistic peers.

Understanding that Autism is an identity and culture helps us to understand that an Autistic person and a non-autistic person in communication is a cultural mismatch. It’s like taking two people from two different countries that speak two completely different languages and understanding that it’s because there’s a language barrier, not because one language is right and the other is wrong, or one language is neuronormative and the other is disordered. It’s not about that at all; it’s about a cultural mismatch. Immersing ourselves in Autistic community helps us to learn more about co-occurring conditions, social nuances and how to thrive as Autistic people. Personally, I have thrived far more from being immersed in Autistic community, from being educated by Autistic folks than engaging in medical textbooks written by non-autistic people that are based on biased observation of our behaviour.

Knowing the difference between Autism, again, and co-occurring conditions, and being supported accordingly. So rather than saying, “Well, anxiety is just a part of being Autistic”, it’s appropriate and necessary to seek support for anxiety not for a professional to tell us or for us to assume that we have to live with anxiety forever because we’re Autistic folks. It is okay to seek support for co-occurring conditions; it’s important to. Cultivating a lifestyle that incorporates safety: safe people, safe places and safe things. Because over time, when we are surrounded by safety and support and nurturing environments, we are able to then practise self-advocacy. We tend to get really great and really skilled at knowing and identifying our support needs and speaking up when we need help. And this is where you can find me if you would like to learn more about my work. Thank you so much for tuning in today.