By Dr Hugh Walker – Clinical Psychologist / Clinic Director
Introduction
During this year’s Autism Awareness Month, my reflections have focused on societal shifts in understanding and acceptance for autistic individuals, and the areas where further awareness and advocacy are crucial. As a newly appointed Director at Minds & Hearts Clinic, I am keen to explore how our services can best meet community needs. Earlier this year, I discussed with my esteemed colleagues, Dr. David Zimmerman and Dr. Wesley Turner, the notable changes in demographics we have observed over our 15-year careers.
Reflecting on the Past
Two decades ago, autism was predominantly viewed through a child-centric lens, with over 95% of the practice assisting child clients or parents and with a diagnostic ratio heavily skewed towards males at about 4:1, which is now closer to 2:1 at our clinic. There was scant recognition of autistic adults, much less autistic parents or neurodivergent families. The concept of feminine autistic phenotypes, extreme demand avoidance, and autistic burnout were virtually unrecognized. Furthermore, until the publication of the DSM-5 in 2013, the prevailing medical opinion separated Asperger’s and Autism into distinct categories. Sensory sensitivities weren’t acknowledged as a diagnostic criterion, and the DSM-IV inaccurately asserted that it was impossible to be diagnosed with both autism and ADHD (AuDHD). Significant efforts were required to liaise with allied health practitioners and hospitals to challenge diagnoses of many adults with Borderline Personality Disorder, Bipolar Disorder (Type II), and “Treatment-Resistant Depression,” who were often inappropriately treated. These societal misunderstandings and medical missteps often led to a pervasive, subtle, and sometimes overt forms of invalidation, precipitants known to cause complex PTSD and/or exacerbate deeper seated coping mechanisms at the personality level alongside their undiagnosed autism.
Fortunately, my training with Professor Tony Attwood and Dr. Michelle Garnett, pioneers in the field during the early 2000s, and later with Tony’s protégé, Steve Den-Kaat, exposed me to frontline clinicians deeply involved in this advocacy. In 2010, Professor Attwood envisioned a future where Autistic Elders would spearhead a new wave of advocacy and societal awareness. It has been delightful to witness this vision come into fruition over the past decade. I have gained invaluable insights from wise autistic adults who have expanded societal awareness through presentations, books, and podcasts. They have also contributed to research and served as positive role models, showcasing the diversity of autistic experiences.
The acceptance of autistic individuals’ unique talents within the workforce has been another positive development. Many organizations, including banks, government entities, and consultancy firms, now actively recruit autistic individuals for specific roles, an international trend that was led by Denmark’s Specialisterne which was founded in 2004.
Another interesting observation has been that 10-years ago when doing assessments with children often the referring parent might have covertly relayed a message that they think the other parent is neurodiverse. Nowadays it is common for the referring parent and/or the other parent to be much more open about their curiosity as to whether they are neurodiverse themselves. This observation of family units being more open is a significant and positive step forwards given that it can facilitate a smoother transition for embracing and accepting the neurodiversity of their child though can also increase the self-understanding and functioning of neurodivergent families as a whole.
Emerging Trends and Areas of Focus
Under the guidance of Dr. Wesley Turner and Dr. David Zimmerman, Minds & Hearts has emphasized the importance of understanding how neurodevelopmental, attachment-based factors and family systems are intertwined within mental health and well-being. We have explored a range of therapeutic approaches extending from our foundational cognitive-behavioural training to incorporate attachment theory, developmental and evolutionary psychology as noted in our recent publication. The exploration of novel approaches has largely come from looking to improve the psychological well-being of our adult autistic clients where large research studies of therapy for co-occurring mental health conditions is lagging and for whom now represent almost 50% of our clinical practice.
These models offer insights that have been helping our adult clients who have recently become aware that they are autistic as they journey towards disentangling past coping personas and self-dialogue which were forged on old and false assumptions that they were neurotypical and therefore often maintain enduring patterns of maladaptive coping which can fuel episodes of autistic burnout. It is worth reiterating, delineating non-modifiable autistic characteristics to be embraced and accepted with self-compassion from modifiable coping responses and patterns of internalised self-talk that were forged in early life experiences (e.g. in family systems, workplaces, educational environments, implicit societal messages) based on the assumption the autistic individual was neurodiverse is crucial for improving well-being and function for this group. Professor Attwood discussed how these coping mechanisms develop over years, even decades, before individuals and their families recognize their autism. In 2006, he detailed children’s reactions to differences in “The Complete Guide to Asperger’s Syndrome,” on pages 18 – 23 which closely align with the coping modes/styles identified in schema therapy. From clinical experience, when early discovery of autism can take place and it is paired with accurate understanding, acceptance, and compassion for difference with our society, educational system, and family system, then the degree of maladaptive coping that the individual needs to deploy consciously or unconsciously is dramatically reduced by adulthood. This is why at Minds & Hearts when we conduct our assessments with children, adolescents, and adults we take care to not only consider if the discovery of autism is made or not, but also to contextualise this information into a holistic clinical formulation to help this disentangling process of modifiable and non-modifiable factors when additional mental health concerns exist in the context of autism so that they can improve functioning and further their well-being.
Dr. Erin Bullus, an autistic Clinical Psychologist, has expanded these ideas of core emotional needs for autistic people in a prescient 2019 article that has significantly influenced my thinking over the past few years. Dr Bullus’ article builds off Jeffrey Young’s Schema Therapy where Young had posited that when five universal core emotional needs for children are met in their family and broader community (school, work, in public, from media etc.) the risk of mental health issues developing is significantly reduced. Young’s five core emotional needs were: (i) a secure, safe, and understanding connection with attachment figures, (ii) freedom of emotional and behavioural expression, (iii) Competence, (iv) Play, and (v) Healthy/Realistic Boundaries. Dr Bullus expanded upon this general theory and suggested additional core emotional needs for young autistic individuals including: (vi) attunement and co-regulation across the lifespan; (vii) routine, (viii) predictability, and sameness; (ix) titration of sensory input; (x) freedom to focus on interests; and (xi) social and practical guidance.
Looking to the Future
Despite the promising trends, a significant amount of work remains in addressing many of the inequalities that autistic people face. The new government draft of the national autism strategy would do well to consider how to support societal units from the individual, family, community, school, public environment and workplace to meet autistic needs that Bullus has expanded upon. Meeting the unique needs of autistic children, adolescents, and adults will likely improve their outcome areas of social inclusion, economic inclusion, services and supports, and physical and mental health. In contrast, continued unmet needs may maintain chronic subtle and/or overt invalidation, which can predispose emotional disorders, complex PTSD and other attachment difficulties.
There is also a need to spread awareness to other clinicians about methods to reduce maladaptive models of self-organization that predispose and maintain patterns of autistic burnout across the lifespan beyond the usual environmental accommodations such as energy accounting and sensory titration, which we currently aim to do through the supervision we provide to other clinics and new articles. Modern therapeutic approaches that integrate attachment and developmental psychology such as Schema Therapy (Roediger, Stevens & Brockman, 2018) and Internal Family Systems Therapy (Schwartz, 2019) may hold key insights into what maintains these maladaptive patterns.
As clinicians schooled in evidence-based practice, having limited randomised controlled trials published with the population you are working with because of its relative novelty can pose challenges. However, Minds & Hearts is no stranger to working in an evolving space for the 20-years over this period. Many scientists forget that the definition of Evidence Based Practice (EBP) extends beyond RCTs alone and involves integrating the best available research evidence with clinical expertise as well as the patient’s unique values and circumstances (Straus, Glasziou, Richardson, & Haynes, 2011) within the practice context (Hoffman, Bennett, & Del Mar, 2017). Moreover, at Minds & Hearts we continue to deliver the well-researched programs for our children and adolescent clients emotional and social skills though since 2018, have extended formulations for all clients to be broader and more family systems and attachment-based which provides further understanding for clients and treatment approaches for how mental health conditions arose adjacent to previously undiscovered autism. In addition, we have begun innovating approaches to assist autistic adults who are suffering from patterns of autistic burnout and other phenomena that has recently been emerging and where further research is needed. We hope to publish our paper on this approach by the end of the year and in the next five years, we hope that we can be a part of the larger trials within the emerging trends of autism to assist improving the health outcomes for all autistic people.
In summary, as Autism Awareness Month draws our attention to the strides made by the Autistic Community over the past decades it also draws our attention to the significant journey ahead. Minds & Hearts Clinic remains devoted to enhancing understanding and support for the autism community, navigating the evolving landscape that shapes our collective mission.
References
Bulluss, E. (2019). Modified schema therapy as a needs based treatment for complex comorbidities in adults with autism spectrum conditions. Australian Clinical Psychologist, 1-7
Attwood, A. (2006). The complete guide to Asperger’s syndrome. Jessica Kingsley Publishers.
Schwartz, R. C., & Sweezy, M. (2019). Internal family systems therapy. Guilford Publications.
Roediger, E., Stevens, B. A., & Brockman, R. (2018). Contextual schema therapy: An integrative approach to personality disorders, emotional dysregulation, and interpersonal functioning. New Harbinger Publications.
Young, J. E., Klosko, J. S., & Weishaar, M. E. (2003). Schema therapy. New York: Guilford, 254, 653-658.
Vuijk, R., Turner, W., Zimmerman, D., Walker, H., & Dandachi-FitzGerald, B. (2024). Schema therapy in adults with autism spectrum disorder: A scoping review. Clinical psychology & psychotherapy, 10.1002/cpp.2949. Advance online publication. https://doi.org/10.1002/cpp.2949
Australian Government Department of Social Services. (n.d.). National Autism Strategy. Retrieved April 17, 2024, from https://www.dss.gov.au/disability-and-carers/national-autism-strategy