The Portal Podcast

In this episode of the Portal Podcast, hosts Professor Sarah Lonbay and Dr Lesley Deacon introduce Series 4, which focuses on the intersection of neurodiversity and social work practice. Over the series, they speak to six guests whose research and lived experiences shed light on important and often misunderstood issues facing neurodivergent individuals, their families, and professionals working in the field. Lesley and Sarah outline each upcoming episode, giving listeners a preview of the topics explored. The conversations range from the challenges autistic mothers face within child protection systems, to reframing autism through lived experience, to understanding autistic burnout in social workers themselves.

Books/ documents/ resources mentioned:

Book by Alice Running. Running, A. (2021) Helping Your Child with PDA Live a Happier Life. London: Jessica Kingsley Publishers.

Bertilsdotter Rosqvist, H, Deacon, L and Guthrie, J (forthcoming) Neuro-Inclusive Social Work . London: Palgrave Macmillam.

References:

Newson, E. (1990). Pathological Demand Avoidance Syndrome: Mapping a New Entity Related to Autism? [Inaugural Lecture]. University of Nottingham, UK.

PDA Society. (2025). Autism and PDA. https://www.pdasociety.org.uk/about-pda/autism-and-pda/ (accessed 14 January 2025).

In this episode, Professor Sarah Lonbay and Dr Lesley Deacon speak with experienced independent social worker Cathie Long about her professional and personal journey in the field of neurodiversity, and her research into the contentious and deeply impactful issue of Fabricated or Induced Illness (FII).

Cathie shares how her work with autistic and ADHD individuals evolved from her early career in child protection and mental health, alongside her own later-life diagnosis of autism and ADHD. The conversation explores the frequent misdiagnosis of autistic women with Emotionally Unstable Personality Disorder (formerly Borderline Personality Disorder), the stigma that follows such labels, and the critical need for practitioners to challenge assumptions and see the person beyond the diagnosis.

This conversation is an important listen for social workers, health professionals, and anyone interested in neurodiversity, safeguarding, and systemic change in practice.

Key concepts/ terms used:

• Neurodiversity – The concept that neurological differences such as autism, ADHD, dyslexia, etc., are natural variations of the human brain rather than deficits or disorders.
• Autism – A neurodevelopmental difference characterised by differences in social communication, sensory processing, and patterns of behaviour or interests.
• ADHD (Attention Deficit Hyperactivity Disorder) – A neurodevelopmental condition involving differences in attention regulation, impulsivity, and hyperactivity.
• Emotionally Unstable Personality Disorder (EUPD) – Formerly known as Borderline Personality Disorder, a mental health condition characterised by perceived instability in relationships, emotions, and self-image.
• Pathological Demand Avoidance (PDA) – A profile associated with autism involving extreme avoidance of everyday demands, driven by anxiety.
• Fabricated or Induced Illness (FII) – A term used when professionals believe a parent is exaggerating, fabricating, or deliberately causing a child’s illness; historically linked to Munchausen Syndrome By Proxy.
• Masking – The conscious or unconscious suppression of natural behaviours in order to conform to social expectations, often seen in autistic individuals.
• Education, Health and Care Plan (EHCP) – A legal document in England describing a child or young person’s special educational needs and the support required.
• Double Empathy Problem – The idea that communication breakdowns between autistic and non-autistic people are mutual.

Resources / Publications Mentioned:

• British Association of Social Workers (BASW) Practice Guide on Fabricated or Induced Illness – Lead authored by Cathie Long. https://basw.co.uk/policy-and-practice/resources/fabricated-and-induced-illness-practice-guide
• British Journal of Social Work – Article on FII co-authored by Cathie Long and Dr Fiona Gullon-Scott. Gullon-Scott, F. & Long, C. (2022). FII and Perplexing Presentations: What is the Evidence Base for and against Current Guidelines, and What are the Implications for Social Services? British Journal of Social Work, 1-17
• Research by Cerebra at the University of Leeds into FII. https://cerebra.org.uk/research/fabricated-or-induced-illness-research-report/
• Royal College of Paediatrics and Child Health – Guidance on FII. https://childprotection.rcpch.ac.uk/resources/perplexing-presentations-and-fii/

In this episode of The Portal Podcast, hosts Professor Sarah Lonbay and Dr Lesley Deacon speak with Dr Amy Pearson, a developmental psychologist at Durham University’s Centre for Neurodiversity and Development. Amy shares her research journey from a traditional, deficit-based view of autism to a neurodiversity-affirming perspective, informed by both her professional work and personal experience as a late-diagnosed autistic woman.

The conversation explores how autism has historically been defined, critiquing outdated concepts such as the “triad of impairments” and gendered interpretations like the “extreme male brain” theory. Amy discusses how the deficit model still dominates many services, despite pockets of progress, and emphasises the need for co-designed, up-to-date training led by neurodivergent people.

A substantial part of the episode focuses on Amy’s “Mate Crime” research, which examines the victimisation of autistic people by those they know, including friends, romantic partners, and family members. She explains how compliance-based interventions can unintentionally teach autistic people to override their own boundaries, increasing vulnerability to abuse. The discussion highlights issues such as poly-victimisation, normalisation of violence, structural barriers to accessing support, and the need for accessible relationship education.

Other topics covered include the dominance of autism within neurodiversity discourse, broad versus narrow definitions of the term “neurodivergent”, the links between autism and eating disorders, misdiagnosis of conditions such as Borderline Personality Disorder, and the societal challenges facing neurodivergent people today. The episode closes with a vision for a more inclusive society and the importance of small, incremental changes in shifting systems and attitudes.

Key Concepts / Terms Used:

• Neurodiversity: The concept that neurological differences (e.g., autism, ADHD, dyslexia) are natural variations of the human brain, rather than deficits or disorders.
• Neurodivergent: A person whose neurological development and functioning differ from the dominant societal norms (includes autistic people, ADHDers, dyslexic individuals, and more).
• Autism – Triad of Impairments: A framework defining autism through deficits in social communication, social interaction, and restricted/repetitive behaviours.
• Extreme Male Brain Theory: A contested theory suggesting autistic people have “hyper-male” cognitive traits (e.g., high systemising, low empathy).
• Female Autism Phenotype: The idea that autistic women present differently from autistic men, critiqued here as being more about gendered social experiences than a distinct autism type.
• Deficit Model: A framing that views neurodivergent traits primarily as impairments to be fixed.
• Mate Crime: Abuse or exploitation of a disabled or neurodivergent person by someone they consider a friend.
• Poly-victimisation: Experiencing multiple forms of victimisation, often across different relationships and contexts.
• Masking: Suppressing or hiding autistic traits to fit societal norms or avoid stigma.
• Compliance-Based Interventions: Therapies or educational approaches that focus on making the person comply with external demands, sometimes at the expense of autonomy or boundaries.
• Q-sort: A research method where participants rank statements to reveal subjective views and identify clusters of perspectives.
• PIP (Personal Independence Payment): UK welfare benefit for disabled people to help with extra living costs.

Resources / Documents / Publications Mentioned:

• Oliver McGowan Training (UK autism and learning disability awareness training) https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism
• Research and advocacy work by Jim Sinclair (autism rights movement) https://libguides.butler.edu/c.php?g=1445842&p=10744138
• Term “Neurodivergent” coined by Kassiane Asasumasu https://x.com/UVGKassi?t=qYMhAPXJLJGlKUYyB0bQIQ&s=09   Botha, M., Chapman, R., Giwa Onaiwu, M., Kapp, S. K., Stannard Ashley, A., & Walker, N. (2024). The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory. Autism, 28(6), 1591-1594. https://doi.org/10.1177/13623613241237871 (Original work published 2024)
• Research by Will Mandy on autism and eating disorders Adams KL, Mandy W, Catmur C, Bird G. Potential mechanisms underlying the association between feeding and eating disorders and autism. Neurosci Biobehav Rev. 2024 Jul;162:105717. doi: 10.1016/j.neubiorev.2024.105717. Epub 2024 May 15. PMID: 38754718.
• Research by Liz Evans on autism and eating behaviours https://www.durham.ac.uk/staff/elizabeth-evans/

In this episode of the Portal Podcast, Professor Sarah Lonbay and Dr Lesley Deacon speak with writer and author Alice Running about the systemic issue of parent-carer blame in autism and SEND (Special Educational Needs and Disabilities) services. Drawing on her lived experience as an autistic mother of neurodivergent children, Alice explains how she has repeatedly encountered damaging narratives from professionals, ranging from assumptions about her parenting to misinterpretations of her children’s needs.

Alice discusses her research collaboration with parent advocate Danielle Jata-Hall, which surveyed over 1,000 parent carers across the UK, exposing a widespread culture of blame. She highlights how generic, non-individualised interventions, which are often based on neurotypical benchmarks, fail autistic and PDA (Pathological Demand Avoidance/Pervasive Drive for Autonomy) children, and how inappropriate support can create distress while parents are blamed for “non-compliance.”

The conversation explores the biases faced by lone parents and neurodivergent parents, the harmful conflation of disability provision and safeguarding, and the importance of autistic-informed practice, genuine listening, and professional curiosity. Alice also offers practical suggestions for change, including separating safeguarding from provision, adopting a cultural lens to assess autistic families, improving accountability, and increasing professional training.

Key Concepts / Terms Used:

• Parent-Carer Blame: The tendency of professionals to attribute a child’s difficulties to perceived failings in parenting rather than recognising unmet needs or systemic barriers.
• SEND (Special Educational Needs and Disabilities): Support and services designed for children with learning difficulties or disabilities.
• EHCP (Education, Health and Care Plan): A legal document outlining the support a child with SEND requires.
• PDA (Pathological Demand Avoidance / Pervasive Drive for Autonomy): A profile characterised by extreme avoidance of everyday demands, often due to anxiety and a strong need for autonomy.
• Culture of Blame: A systemic pattern in which parents are held responsible for difficulties arising from systemic or service failures.
• Tragedy Model of Disability: A perspective that views disability as a personal tragedy rather than a natural part of human diversity.

Resources / Publications Mentioned:

• Survey by Alice Running and Danielle Jata-Hall on parent-carer blame (2023) https://www.alicerunningautismadvocacy.com/parental-blame-research
• Lesley Deacon’s forthcoming book on neuro-inclusive social work Bertilsdotter Rosqvist, H, Deacon, L and Guthrie, J (forthcoming) Neuro-Inclusive Social Work . London: Palgrave Macmillam.

In this episode of The Portal Podcast, hosts Professor Sarah Lonbay and Dr Lesley Deacon speak with Dr Laura Lennuyeux-Comnene and Professor Rebecca Charlton from Goldsmiths, University of London, about the COAST Project – Co-designing Autism Social Work Training. The project focuses on collaborating with older autistic adults, social workers, and social care providers to create training that supports social workers in working more effectively with autistic people aged 50+.

The discussion covers the researchers’ journeys into this field, the importance of co-production in training design, and the challenges faced by older autistic adults, including late diagnosis, systemic barriers in social care, and the intersection of autism with ageing. The guests reflect on the difficulties in reaching diverse participants, the need for social workers to reframe existing skills with confidence, and the importance of recognising each autistic person’s unique lived experience. The conversation also touches on intersectionality, intergenerational dynamics, and structural changes that could improve service access.

Listeners will gain insights into the realities of ageing and autism, the gaps in current social work practice, and practical steps for creating inclusive, needs-led support.

Key Concepts / Terms Used:

• Neurodiversity: The concept that neurological differences, such as autism and ADHD, are natural variations of the human brain, rather than deficits.
• Co-design / Co-production: Collaborative creation of resources, training or services, involving those with lived experience alongside professionals.
• Intersectionality: A framework for understanding how multiple aspects of identity (e.g., race, gender, disability) intersect to create unique experiences of discrimination or privilege.
• Late diagnosis: Receiving an autism diagnosis later in life, often after decades without formal recognition.
• Needs-led approach (Care Act principle): Providing support based on assessed needs, rather than on the existence of a formal diagnosis.

Resources/ documents mentioned:

Paper by Liz O’Nions et al. on diagnosis rates in older adults: O’Nions, E., Petersen, I., Buckman, J. E., Charlton, R., Cooper, C., Corbett, A., … & Stott, J. (2023). Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data. The Lancet Regional Health–Europe, 29. Available here: https://pubmed.ncbi.nlm.nih.gov/37090088/

In this episode of The Portal Podcast, Professor Sarah Lonbay and Dr Lesley Deacon speak with Professor Hanna Bertilsdotter Rosqvist, a Swedish sociologist and social work professor, activist, and member of the autistic community. Hanna shares her journey from queer studies and community activism into autism research, including her own “community assessment” and self-identification as autistic.

The discussion explores how lived experience challenges dominant, deficit-based narratives of autism, advocating for a reframing grounded in embodiment, sensory experience, and the development of new, more nuanced language. Key concepts such as the “double empathy problem” and “triple empathy problem” are explained through relatable metaphors. Hanna emphasises the intertwined nature of her activism and research, the importance of recognising neurodivergent professionals in social work, and the value of “translators” between neurotypical and neurodivergent communication styles.

The conversation also touches on neurodivergent sexuality, the need to move beyond neurotypical and heteronormative frameworks, and how insights from communities such as BDSM can broaden understanding of sensory pleasures and pacing in intimate relationships. Practical recommendations for social workers include recognising neurodivergent people as a language minority, allowing for processing time, and creating accessible spaces that work for the individual.

Key Concepts / Terms:

• Community Assessment: Recognition and acceptance of an individual’s identity by peers within the community, rather than through formal diagnosis.
• Double Empathy Problem: Communication difficulties between autistic and non-autistic people arising from different lived experiences and perspectives; neither party is “at fault”.
• Triple Empathy Problem: Additional communication challenges when a professional role (with its hierarchical and specialist language) is added to autistic–non-autistic interactions.
• Neurodiversity Paradigm: Framework viewing neurological differences as natural variations rather than deficits.
• Masking: Suppressing or hiding one’s natural behaviours or responses to fit neurotypical expectations.
• Embodiment: Understanding autism through bodily, sensory experiences rather than purely cognitive models.

Resources / Publications Mentioned:

Bertilsdotter Rosqvist, H., Chown, N., & Stenning, A. (2020). Neurodiversity studies. Routledge.

Research on “double empathy” problem by Damien Milton (2012). Milton D. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability and Society, 27(3), 883–887.

Neuro-Inclusive Social Work book. Bertilsdotter Rosqvist, H, Deacon, L and Guthrie, J (forthcoming) Neuro-Inclusive Social Work . London: Palgrave Macmillam.

Bertilsdotter Rosqvist, H., Day, A., & Krazinski, M. (Eds.). (2024). Exploring autistic sexualities, relationality, and genders: Living under a double rainbow. Taylor & Francis

In this episode of The Portal Podcast, Professor Sarah Lonbay and Dr Lesley Deacon speak with Jenni Guthrie about her work exploring the experiences of autistic and neurodivergent social workers and students. Jenni shares insight into the lack of research in this area, the challenges autistic professionals face in social work, and the strengths they bring to the profession.

She discusses her completed collaborative autoethnography project co-created with neurodivergent students and newly qualified social workers, which examined the value of safe, neuro-affirming community spaces. Key findings highlighted the importance of organisational support, neurodivergent facilitators, and recognition of the impact of ableism, racism, and the conflation of both.

The conversation also explores the stigma connecting autism with “risk,” the barriers of diagnosis as privilege, and the compounded challenges of autistic burnout versus social work burnout. Jenni calls for regulators and organisations to actively welcome neurodivergent practitioners and invest in research, training, and safe spaces.

Key Concepts / Terms:

• Neurodivergent – A person whose neurological development and functioning differ from the dominant societal norms (includes autistic people, ADHDers, dyslexic individuals, and more).
• Autistic Burnout – A state of intense physical, mental, or emotional exhaustion experienced by autistic people, often due to chronic stress from navigating non-accommodating environments.
• Diagnosis as a Privilege – The idea that formal diagnosis is dependent on access to resources, geography, socio-economic factors, and social perceptions, meaning not everyone can obtain one.
• Collaborative Autoethnography – A qualitative research method where multiple participants collectively analyse and reflect on their personal experiences to explore cultural, social, or professional contexts.
• Ableism – Discrimination and social prejudice against disabled people.
• Anti-Oppressive Practice – An approach in social work that seeks to recognise, challenge, and change the inequalities and power imbalances in society.

Resources / Publications Mentioned:

Collaborative autoethnography research project on community spaces for neurodivergent social workers. In Bertilsdotter Rosqvist, H, Deacon, L and Guthrie, J (forthcoming) Neuro-Inclusive Social Work . London: Palgrave Macmillam.

BASW Special Interest Group for Neurodivergent Social Workers. https://basw.co.uk/support/groups-and-networks/special-interest-groups/neurodivergent-social-workers-special-interest

Autistic Parents UK (charity) https://www.autisticparentsuk.org/about

Jenni Guthrie’s reflexive account Guthrie, J (2023) Swimming with the Current But against the Tide: Reflections of an Autistic Social Worker, The British Journal of Social Work, Volume 53, Issue 3, Pages 1700–1710.

Blog posts by Jenni Guthrie. https://www.autisticsocialworker.co.uk/

In this episode of The Portal Podcast, hosts Dr Lesley Deacon and Professor Sarah Lonbay reflect on Series 4, which focused on neurodiversity in social work. Drawing on conversations with a range of guests, they explore key themes including the centrality of lived experience, challenging deficit-based and pathologising models of autism, and the importance of person-centred approaches.

They discuss how neurodivergent voices should be central in research, practice, and service design. The episode critiques outdated models that frame autism as a deficit, advocating instead for strengths-based and affirming approaches.

Other themes include the link between systemic misunderstanding and trauma, the need for curiosity rather than risk-driven assessments, and the importance of trust-building, follow-through, and allowing processing time. They emphasise that difference should not be seen as a problem, and social workers should focus on truly seeing and valuing the individual in front of them, rather than forcing conformity to rigid systems.

The hosts also highlight metaphors used by guests, such as communication as a “different language” needing translation, and introduce the concept of “community assessment” as a way of understanding individuals within their social context.

Key Concepts / Terms Used:

• Neurodiversity: The concept that neurological differences (such as autism, ADHD, dyslexia) are part of natural human variation and should be respected as such.
• Lived Experience: First-hand personal experience of a condition or identity, often used to inform research and practice.
• Deficit Model: A framework that views differences (e.g., autism) as deficiencies to be fixed, rather than variations to be understood and valued.
• Pathologising: Treating a difference or behaviour as a medical problem or disorder that needs to be fixed.
• Person-Centred Practice: An approach that focuses on the needs, preferences, and values of the individual receiving support.
• Microaggressions: Everyday, subtle, sometimes unintentional discriminatory comments or behaviours.
• Community Assessment: Understanding individuals in the context of their community, recognising shared knowledge and observation within that group.

Resources / Publications Mentioned:

Upcoming book on neurodiversity in social work (with contributions from podcast guests). Bertilsdotter Rosqvist, H, Deacon, L and Guthrie, J (forthcoming) Neuro-Inclusive Social Work . London: Palgrave Macmillam.