Season 7 Episode 6: High Support Needs and Autism with Sienna Macalister
This week, Monique chats with Sienna Macalister (they/them), who listeners may know by their Instagram handle @sienna.stims, about being an Autistic person with high support needs.
Sienna is a non-binary, ‘unreliably speaking’ Autistic advocate, diagnosed with Autism Level 3. They are multiply neurodivergent and have a number of co-occurring health conditions, including Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Neurofibromatosis Type 1 (NF1).
Sienna is passionate about creating a world where Autistic people are not just accepted but celebrated, with a deep affinity for exploring neurodivergence with nuance.
Monique and Sienna cover:
What does ‘unreliably speaking’ mean?
What neurodivergence means to Sienna and the importance of understanding the term to mean more than just Autism and ADHD.
Sienna’s experience of early diagnosis of Autism and the diagnostic overshadowing this led to, particularly around diagnosis of their health conditions.
The evolution of Sienna’s neurodivergent identity.
Sienna’s experience of using mobility, communication, and health and wellbeing supports.
Support needs, disability, and therapeutic intervention as a valid part of the neurodivergent experience, and the difference between affirming and non-affirming therapies.
The role of lateral violence and internalised ableism in excluding people with higher support needs from the cultural conversation on Autism.
Sienna’s suggestions to increase inclusion and representation for Autistic people with higher support needs.
Sienna’s current special interest – budgie breeding!
[00:02:29] What does ‘unreliably speaking’ mean?
Key Takeaways:
‘Unreliably speaking’ is more of a specific term, whereas ‘semi-verbal’ would be considered the umbrella term.
‘Unreliably speaking’ means you can’t rely on speech to get your message across or to be understood, and it means different things for different people. It's not one set experience.
It might mean needing to use AAC to supplement speech, or that when you do speak, the message you intend rarely comes across accurately.
Sienna shares that as a child, it was very rare for them to be understood, which meant that they couldn’t clearly communicate what was happening and seek support at times when they experienced bullying.
Unreliably speaking people often experience long periods of what Sienna calls “inter-verbal shutdown,” where communication, including speech, becomes inaccessible.
The term “non-verbal” is generally disliked by the non-speaking community, so many prefer alternative phrasing like “inter-verbal shutdown” to describe these experiences.
[00:05:07] What neurodivergence means to Sienna and the importance of understanding the term to mean more than just Autism and ADHD
Key Takeaways:
Neurodivergence means having brains that work differently, bringing different solutions and creativity to society. However, the term has been misused and narrowed by social media to mainly refer to just Autism and ADHD.
Videos online often list neurodivergent traits that are really just Autistic or ADHD traits, which can confuse undiagnosed people and make it harder for them to find the right information about themselves.
When neurodivergence is treated as just Autism and ADHD, it excludes people with other forms of neurodivergence, including dyspraxia, Down Syndrome, intellectual disability, and other neurodivergent conditions.
Sienna shares that in addition to being Autistic and ADHD, they have dyspraxia, anxiety, and Obsessive-Compulsive Disorder, and points out that OCD is often misunderstood and misused as a casual term rather than recognised as a serious condition.
“The neurodiversity affirming paradigm ensures that neurodiversity is valued and listened to, intersectionalities understood, strengths are focused on, harmful practices are avoided, and that systemic discrimination is addressed.”
[00:09:47] Sienna’s experience of early diagnosis of Autism and the diagnostic overshadowing this led to, particularly around diagnosis of their health conditions
Key Takeaways:
Sienna shares that they were diagnosed as Autistic at a young age and doesn’t remember much of the process.
Their diagnoses of Ehlers-Danlos syndrome (EDS), POTS, and NF1 were delayed partly because doctors overlooked symptoms due to their Autism diagnosis, and despite NF1 having clear physical signs at birth, it wasn’t properly investigated until a new GP intervened.
Sienna reflects that having a high pain threshold and difficulty describing internal sensations contributed to delayed diagnoses of EDS and POTS, with early symptoms often dismissed as anxiety because of their existing Autism and anxiety labels.
Diagnostic overshadowing was worsened by the medical system’s older mindset of focusing on treating only one condition at a time and forcing all symptoms to fit into an Autism diagnosis, rather than exploring possible co-occuring conditions.
This mindset can be amplied by gendered discrimination, with medical professionals often failing to thoroughly investigate symptoms like chest pain or tachycardia in people assigned female at birth, making it especially hard to access accurate diagnosis and care for conditions like POTS.
[00:16:50] The evolution of Sienna’s neurodivergent identity
Key Takeaways:
Sienna explains that when they were young, knowing they were different felt very negative, as the positive framing of neurodivergence was rare at the time, especially for those with higher support needs.
They describe feeling isolated, anxious, and sad, and noticing that other kids didn’t have therapy every day after school and that teachers and kids at school treated them differently.
As the concept of neurodivergence grew more positive and inclusive over time, Sienna was able to embrace their identity, finding more acceptance both online and in real life.
They share that they have been a note-taker in writers' rooms for film and television and have been published twice in anthologies - Sienna reflects that they are excited and proud of where they are now.
Sienna’s latest publication is in Someone Like Me, an anthology from University of Queensland Press featuring 25 Autistic women and gender-diverse people, which they believe should be essential reading for clinicians and the general public.
[00:21:11] Sienna’s experience of using mobility, communication, and health and wellbeing supports
Key Takeaways:
Needing supports like a wheelchair and AAC can be both liberating and frustrating, providing more freedom and access but also bringing challenges.
For example, using a wheelchair allowed Sienna to return to places like shopping centres after years, but barriers like hills, grass, and inaccessible buildings still make navigating the world harder. Using AAC to support communication can also mean that their hands are busy, and people will often not wait for a response.
Sienna shares that other supports they use include braces for limb dislocations, an Apple Watch to monitor heart rate, and their assistance dog who is trained to alert them to high heart rates and provide physical grounding.
Supports should be normalised and made more accessible, but Sienna emphasises that some aids, like poorly fitted wheelchairs or untrained assistance dogs, can cause harm if not properly managed.
Sienna highlights that training an assistance dog takes hundreds of hours, and while their dog is an incredible support, it's important to remember that assistance animals are living beings with needs and aren’t a simple or instant solution.
[00:27:06] Support needs, disability, and therapeutic intervention as a valid part of the neurodivergent experience, and the difference between affirming and non-affirming therapies
Key takeaways:
The neurodiversity-affirming paradigm, when applied correctly, values neurodivergent experiences, focuses on strengths, addresses systemic discrimination, and avoids harmful practices, but oversimplifying it can unintentionally harm those with higher support needs.
Sienna explains that while support should always be affirming, interventions like therapy or skill-building can be necessary and helpful if they genuinely benefit the individual. In other cases, adapting behaviours, like stimming, may be about personal safety rather than just appearing “normal,” because society is not yet safe or accepting enough.
Terms like “disability” and “support needs” are seen by Sienna as neutral and necessary for legal protection and recognition. They strongly reject functioning labels (i.e. ‘high functioning’ vs. ‘low functioning’), as these labels create division and deny people the supports they need.
Non-affirming therapies made Sienna feel anxious, like a failure, and pushed them towards unhealthy compliance, whereas affirming therapies now feel empowering, collaborative, and centred on their goals and strengths.
Sienna currently engages in occupational therapy, speech therapy, art therapy, psychology, and they have support workers. Sienna shares that art therapy has been especially effective for them because it allows emotional expression without needing to name emotions, which is helpful given their alexithymia.
[00:39:39] The role of lateral violence and internalised ableism in excluding people with higher support needs from the cultural conversation on Autism
Key takeaways:
People with higher support needs are often excluded from Autism discourse, with some individuals in the neurodivergent community pushing harmful narratives that dismiss or vilify those who have a more stereotypical experience of Autism.
Sienna shares that after posting a video of themselves stimming while watching Bluey, they received a large number of hateful comments from both non-Autistic and Autistic people, showing how internalised ableism and ‘aspie supremacy’ play out within the Autistic community.
Lateral violence, where members of a marginalised group harm each other due to internalised stigma, contributes to the exclusion and mistreatment of Autistic people with higher support needs, reinforcing harmful narratives that damage the whole community.
Sienna suggests that more inclusion could be achieved if larger creators with lower support needs actively amplify the voices of Autistic people with higher support needs, especially since algorithms often deprioritise content featuring AAC users.
Including parents and caregivers respectfully in the neurodiversity community is important, recognising that many are navigating intense medical and societal pressure and are often doing the best they can with the information available, even if their early actions aren't perfectly affirming.
[00:54:17] Sienna’s current special interest – budgie breeding!
Key takeaways:
Sienna’s current special interest is budgie breeding, with a deep focus on the genetics involved - they carefully document the genetic traits of each bird, aiming to predict and influence the appearance of their offspring.
Sienna has collected many books on budgie genetics and can quickly identify multiple traits just by looking at a bird, often surprising those around her.
Connect with Sienna Macalister:
Find Sienna on TikTok @sienna.stims, Instagram @sienna.stims, and on their professional Instagram @sienna.macalister_media, or on YouTube @sienna_stims.
Sienna’s writing is features in the anthologies Someone Like Me, edited by Clem Bastow and Jo Case, and Hyperfocus, edited by Spectrum Writing.
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