‘We are not a vulnerable community, we are made vulnerable’

When putting together this edition we wanted to hold a mirror to the beautiful and brilliant neurodivergent community we work within, and to think about what complexity, challenge and change means for those of us working for change from the inside out. We have long been fans of Kieran and Kristy's work and they have shaped many of our perspectives and experiences as neurodivergent adults and as parents of neurodivergent children, which in turn informs our professional practice and how we show up in, and for, the autistic community.

We invited Kristy and Kieran to be interviewed together to celebrate their friendship and as a testament to the deep connections that we make as autistic people, through shared specialist interests and our own individual love languages. We hope to challenge the dominant narratives about autistic friendship, family and work, and to shine a light on the value of autistic culture and communication.

Our conversation bounced around the topics most prescient for us now: family, work, schools, civil rights, community, the wider social justice movement, politics, academia, privilege, behaviour… and so on. This is the joy of neurodivergent communication, jumping from topic to topic, taking deep dives into each subject through a shared shorthand and appreciation for knowledge and learning. Predominantly, this was a conversation about change-making and how we can use our relative privilege to support our neurokin to move from oppression and suffering to safety and abundance.

Untangling school trauma

Throughout their conversation, Jennifer, Kristy and Kieran address the pervasive issue of unnecessary suffering and trauma stemming from current educational structures. The discussion centres on the social model of disability, advocating for schools to move away from assimilation and adopt approaches rooted in the values of the neurodiversity movement:

Jennifer: There is a very strong drive from educational psychologists towards integration – but they are coming at that from a neurotypical perspective and they're not putting the safety and the scaffolding in place for our autistic children, for our traumatised children, for our cared for children, for our learning disabled children. So what does segregation and integration mean for you?

Kristy: It's assimilation and not integration. If we're taking a predominant neuromajority… I don't even know if it exists to be honest, but 'neurotypical'… and we're expecting everyone to integrate, to live and think and be like that, that's assimilation. Until we start humanising what we know about neurodivergence, I just can't see how integration is even possible.

Kieran goes on to critique the tendency to attribute 'additional needs' to children who do not fit narrow norms, and challenges conventional interventions by emphasising the need for approaches which prioritise agency and the holistic nature of a child's environment.

Kieran: Kristy summed up what I would call the additional needs fallacy, in that we centre what we consider to be 'normal' within education. What a child looks like, how they learn, what they should be doing… people that don't fit that very narrow view of development, learning and achievement… We say they have additional needs and we try to add things on and shoehorn them into that central view, instead of broadening the system.

When they're talking about the environment, they're talking about sensory stuff. The environment includes the human beings that are around us… the emotional language that surrounds us… the ethos and the ethics. We're intervening with the child that actually doesn't need the intervention. If we intervened with helping kids to understand themselves, to have autonomy and a little bit of agency – that's intervention that we need.

Navigating guilt and healing

Anita and Kristy provide insight into the challenges faced by parents navigating an inflexible education system. They discuss how parents are bound by constraining systems and narratives which are harming neurodivergent children.

Anita: The very narrow system that our education is set at doesn't allow for difference, and actually, I think it's worse than that – it's creating harm and trauma and distress and the ramifications of that are real and long-lasting.

Kristy: They are so traumatised because so many of us learn that we've been part of the problem for our children, rather than a part of the solution. That breaks my heart, when I sit with hundreds of families who are struggling to forgive themselves for participating in a system that traumatises autistic people… but how could they have known any different?

It's a very rare thing for an autistic adult who does not have a positive identity and culture, to feel that they can say no to something that's happening with their child who is avoiding school.

When I see those families who are peeling their children off their bodies, you can see the exhaustion, burnout and fear radiating from those parents because they probably had parents that experienced the same thing or another of our co-occurring conditions, which is alcoholism, addiction, disordered eating, psych institution visits… So there has to be an understanding that the possibility of them having some form of generational trauma is very, very high.

Jennifer and Kristy go on to explore how societal ableism compounds trauma for autistic parents who are advocating for and embodying autistic ways of being. Jennifer openly discusses her journey under psychiatric care, highlighting the vulnerability of being an autistic advocate in professional settings.

Jennifer: There's the double bind of being a proud autistic parent… At the moment I'm under psychiatric care because of autistic burnout, and that is being discussed a lot in around the family meetings. Am I capable? And this question isn't for me, I know the answer. But it's that vulnerability in groups of professionals that you turn up, and you advocate and you're 'less than'… you are less than by virtue of your neurodivergence, your trauma, your secondary mental health difficulties, whether that is addiction or anxiety or any of the other things that come along with being re-traumatised by a system that isn't designed for you. 

Kristy draws parallels between Aboriginal and autistic culture and parenting styles, revealing the risks and fears experienced by parents who operate outside of norms rooted in colonialism and ableism. 

Kristy: I have a good friend who's an Australian Aboriginal woman, she's doing a PhD on the parallels between Aboriginal identity and culture and autistic identity and culture. She's also autistic, and they are so closely related because I would be terrified to speak about my neurodivergent family culture to certain professionals because the risk of my children being taken away is very real, because we're considered disordered…. the way we raise our children is often considered dysfunctional – screen-time, not going to bed until three o'clock in the morning, sitting up when parents are in bed, eating chocolate ice cream…

This conversation calls attention to the vulnerability of neurodivergent families navigating a system which pathologises their way of living, and the mental health impact of autistic self-advocacy being met with resistance, distrust and judgement.

Challenging societal norms for sustainable wellbeing

With psychologists coming into contact with neurodivergent people (identified or not) through mental health services, Kieran and Kristy discuss the intersections of mental health and being neurodivergent in a neuronormative society. Kieran's insight on the blurred lines between autistic burnout and depression prompt thoughts on the minority stress model as an idea that can be applied to neurodivergent wellbeing.

Kieran: Autistic burnout is when you are in a stressful situation for a period of time, our body's going to respond to that stressful situation. It might be an increase in gut problems or your immune abilities become diminished: physical exhaustion, mental and emotional exhaustion, not being able to think clearly. There's an element of skills lost there as well… and you'll notice the thing that I'm missing here is despondency and that real internalised 'I'm really not good enough, I'm broken, I can't face any of this and I'm just gonna huddle in this corner in a room'. That's where you start moving into a depressive state, and that's that real withdrawal – not from a safety perspective, from an 'I can't cope' perspective. That's where the switch flips between the two, if we had to say that there was a flip between the two.

Kristy, having experienced burnout describes the neurodiversity-affirming ethos of her own business, modelling simple ways in which employers can foster a sustainable work-life where productivity and wellbeing can co-exist.

Kristy: I employ autistic adults and the way that we do it is taking time and evolution of thought and challenging what we think is right because of what society dictates is right. We all work flexi hours, I pay my employees a salary, and they work when they can, and when they can they do a really, really good job. And when they can't, they get compassion and understanding and of course, there's reason around that, but being able to do that…. when in your head all you hear is 'they'll take advantage of you'. That's not how other people do it.

Built on foundations of trust, Kristy's approach challenges capitalist ideas of productivity and provides a tangible example of working outside of neuronormative structures which go beyond 'reasonable adjustments'.

Psychologists' role: Unlearning assumptions

So, how can psychologists become part of positive change in how neurodivergent people experience mental health services, work and school? Kristy describes the shortcomings of education at a university level in that it is often deficit-based and lacks the nuance necessary to become a neuroaffirming psychologist: 

Kristy: I think the education that's on offer about autism is what filters out into all of the fields, and there's no space for individual care. It's all generic frameworks.

Kieran and Jennifer offer ideas to combat this, prompting professionals to actively listen to autistic experiences and to critically engage with the evidence base.

Kieran: Understanding autistic experience takes real investment from a professional to unlearn and unpick lots of the stuff that they might have thought that they knew… that takes listening to autistic voices, being more critical around things like research and around what we think we know first of all, that takes a real critical eye to be able to do that.

And the only way you can learn to do that is to come and have conversations like this, to actually recognise that there are other narratives going on, because there's a real privileged narrative that runs through all of this… privilege means the stuff that we can't see because it doesn't impact us. We don't recognise what the barriers are for other people because they're not our barriers.

Jennifer: The other thing that we always have to look at through a critical appraisal lens is when we're talking about the evidence base, and we overlook it over and over again… What is the outcome we're measuring?

With this critical lens, research on the positive impact of neurodiversity-affirming understanding and autistic identity is ever-growing. Kieran lays out ideas which reflect this, detailing ways in which neuroaffirmative therapeutic practice can provide solace and validation to autistic people in the face of adversity.

Kieran: When you're someone who's grown up, who has been invalidated on practically every level of their experience – on how they think, feel, play, communicate, sleep, eat, emote, how their body moves, every single level of humanity is something that an autistic person can be invalidated and corrected for. Whether you know they're autistic or not, that's happening. So the first step that needs to come in in any therapeutic intervention is actually let's validate the experience.

Most autistic people actually should be accessing the Autistic community. What you need is that level of self-understanding, of what it means to be autistic, sharing relatable experiences, getting that validation. The second step is that you need therapists who are neuroaffirming, who actually recognise that there are different people in the world who are experiencing different stressors and that those stresses need to be validated, because that's what most autistic people don't experience in therapy… the therapist stepping in and saying, hold on a minute, it's not you that's the problem here, it's other people as well… and using that notion of double empathy, of recognising different experiences and bridge that empathy gap.

This conversation serves as a call to action for psychologists to immerse themselves in neurodivergent lived experience and research surrounding autistic wellbeing and consider how this might influence their practice.

Neurodivergent resilience and allyship

In this conversation, Kieran, Kristy, Jennifer and Anita bring their wealth of knowledge and experience to highlight the complex nature of neurodivergent wellbeing and societal ableism which disrupts it. Below, Jennifer and Kieran eloquently summarise the essence of this discussion and call attention to the resilience of the neurodivergent community:

Jennifer: There is a broad community context here…caring about the amount of suffering that is in our community at the moment, which is ironic because we're such a joyful community. There's so much fun and joy and I feel like a lot of the ease and abundance that should be there is taken from us really consistently.

Kieran: We are not a vulnerable community, we are made vulnerable. And that's not on us. It's not intrinsic within us – we are made vulnerable by the systems and people that are around us. 

We hope these small snippets of a deep dive can inspire reflection and action; psychologists are well-positioned to be advocates and allies. We can do this by immersing ourselves in stories of lived experience, critically examining existing research and contributing to the growing co-produced evidence base. With this, we can reimagine our societal structures to celebrate diverse ways of being.

Further quotes (online extra) from our conversation surrounding Positive Behaviour Support and Applied Behaviour Analysis:

Kristy: That PBS in every classroom for my child means that as a non-speaking autistic child, huge assumptions are made about her internalised experience based on how she moves her body, the sounds she makes, and she has a completely different way of communicating. She makes sounds in a way that other people don't. But yet her behaviour is still framed in the same way that you would perceive a neurotypical child's behavior. So if my child wails out loud, they would assume she was in distress rather than expressing joy.

Kieran: Although we have a national body that's accrediting PBS in the UK, there's no regulation for PBS. So firstly, how can we call something a gold standard if it's not being regulated? If there's no one idea about what PBS is, and this is the conversation that we had yesterday… there were practitioners there who I've spent four days with, I know their ethics, the way that they work, I know where they're coming from and what they want, and that they're invested in the people they work with. And they do good practice, but they're using PBS. So what that tells me is that there are different people using PBS in different ways first of all. So actually, how can we say something is a gold standard if it's not regulated, and if it's being interpreted in multiple different ways?

Kieran: If we're looking at PBS, we're talking about it using that ABA foundation. It's based in functional analysis and is looking at behaviour. Actually, we're talking about; how do we control people? How do we stop people behaving in a way which we deem unacceptable? And what are we doing to decide that that behaviour is unacceptable? We're using reductionist terms around behaviour and to define that their behaviour is unacceptable, we might recognise that…that's a person in distress. But because we don't understand the neurological underpinnings of why that person might be acting in that way, because we're not recognising all the narratives that we've talked about, just in this short time. Like in just two hours of talking about the impact of stress, we're talking about marginalisation, we're talking about people responding to stigma and distress in all sorts of different ways in trauma, which most people don't have the privilege of, or have the privilege over so they don't recognise it even exists in the first place, then we're interpreting people's behavior with all that lack of knowledge, which is enormously problematic.

Kieran: PBS does not promote self reflection or professional reflection, because everything is focused on the person, what was the person doing? Why were they doing it? How do we change what they're doing? None of that involves looking at yourself as a practitioner.

Kieran: It's kind of defining people through the four functions of behavior that ABA recognises. And actually, none of that sees the person at all or sees the bi-directional relationship between that person and the environment that they're in. Because the environment is never mentioned, the other people are never mentioned, the professionals around them are never mentioned, the weight of distress and trauma and co-occurring conditions and the life experiences of someone who is marginalised. None of that's ever reflected on. What did they do? Why did they do it? And how do we change it? Yeah. That's what PBS is in an absolute nutshell.

Kieran Rose, (he/him), The Autistic Advocate, UK, specialising in autistic masking, autistic burnout and autistic identity

Kirsty Forbes, (she/her or they/them), An Eductor and AuADHD PDA advocate and parent, Intune Pathways, Australia, passionate about radical acceptance and paradigm shifts that move us as a society from a perspective of autism as a medical disorder to an identity and a culture that is interwoven with pride. www.kristyforbes.com.au.