Musings of an Autistic Counsellor

I recall my mother saying to me when I was around 13 or 14, ‘If any of my children are going to be different, it will be you.’ I never asked her what she meant. She died in 2016, so now I’ll never know. I had always believed she thought I was different as she sensed I wouldn’t be living a heteronormative life. And I haven’t. At that time, and for years to follow, it was the only thing I understood would make me different. I didn’t know any gay men or lesbians back then, and even if I did, they probably weren’t ‘out’ because it remained illegal to ‘practice homosexuality’ in NSW until 1984 (McKinnon, 2018). So, with deep shame about being different, I kept trying to hide who I was in a desperate effort to ‘blend in’. No doubt you have heard similar stories in your practice.

After several months of waiting for my assessment, when I was diagnosed with ASD I felt like I had found myself. I was home. All the ways I was different, the various things that I didn’t understand, the sensory issues – it all suddenly made sense. For the first time in my life, I started to know myself. I understood why too much noise, very bright lights and too many people are overwhelming. I understood why my dogs’ barking is quite literally painful and why looking directly into someone’s eyes is so hard for me. I understood why I felt so exhausted all the time – masking takes a lot of energy.

More interestingly, though, was the impact my diagnosis had on my partner and our relationship. It saved our relationship. My partner didn’t realise how little eye contact I gave her until she read the psychiatrist’s report, and this allowed her to know that sometimes I simply can’t give eye contact, especially when she demanded it. Whenever I was distressed or anxious about things being done in a certain way or within certain timeframes, she thought I was being difficult and obnoxious, but now she realises that it’s calming for me when things are in order.

As clinicians, we might provide some insight into our personal world when we choose to work with, and align with, various organisations, and when we outline our preparedness to work with people of various demographics (for example, the LGBTQIA+ community, people of a religious background, or people living with disability). You have no doubt seen the term ‘neuro-affirming’ used as a way of letting prospective neurodivergent clients know that the clinician provides a safe place for neurodivergent people.

I already mask in the clinical space. I don’t twirl my hair, despite a strong desire to do so when I’m thinking, engaged, listening and being present for my client. Actual self-disclosure is different to telling people I am open to working with them and supporting them, and it is certainly different to masking. Would self-disclosure impact my client base? Would this mean I only attract clients who are neurodivergent? Is this important? Is that what I want? Can this openness of identity forge deeper therapeutic relationships? A neurodivergent counsellor might have different ways of seeing issues presented by neuro-conforming clients, and might this then provide greater opportunity for issues resolution? Is being open about being autistic any different to neuro-conforming counsellors self-disclosing by saying ‘I’m not autistic but I hear you and I see you’?

There is strong co-existence of sexuality and gender differences in the autistic community. Autistic people also experience higher rates of pain and fatigue-related conditions such as fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome than their non-autistic counterparts (Ward et al., 2023). This intersectionality places autistic people at greater risk of marginalisation, unemployment, violence and suicide (Doyle et al., 2022; Hedley et al., 2022). To help mitigate these risks, it’s important to recognise the way we work with autistic people, and to be mindful of the language and images we use when discussing autism and other neurodivergences to prevent further marginalisation.

More broadly, neuro-affirming language is more inclusive, less stigmatising and less pathologising of neurodivergence than language used historically in discussions around neurodiversity. The terms ‘mild autism’, ‘high-functioning’ and ‘low-functioning’ are not neuro-affirming, and would preferably be replaced with ‘low, moderate or high needs’. As an autistic counsellor, I have made it my practice to increase my use of neuro-affirming language; some of my language shifts include:

The symbols that represent autism and neurodivergence are the gold infinity symbol and the rainbow infinity symbol, respectively. The autistic community generally rejects the use of the jigsaw puzzle piece, which was designed in 1963 by Gerald Gasson, who was a board member for the National Autistic Society – an organisation that found autism to be a ‘puzzling’ condition (Grinker & Mandell, 2015). The jigsaw piece implies that autistic people are missing ‘something’, and was later adopted by Autism Speaks (Gernsbacher et al., 2018; Grinker & Mandell, 2015). Autism Speaks is an organisation reviled by the autism community for a number of reasons, including because it supports ABA therapy, seeks an end to autism and aims to develop a genetic pre-natal test for autism (Rosenblatt, 2022). Even simple shifts such as dropping the jigsaw piece help to demonstrate neuro-affirming-practice.

The diagnostic term ‘Asperger’s syndrome’ is outdated and only refers to people who received this diagnosis prior to 2013. In 2013, the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-V), shifted the classification of a number of discrete diagnoses to form a single diagnosis of ASD. This umbrella classification combined autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (PDD-NOS) (Smith & Jones, 2020). While some clinicians might choose to use the term Asperger’s syndrome to ‘soften the blow’ of talking to clients and parents about autism, it is not well received by the autistic community at large. The diagnosis is named after the Viennese paediatrician, Dr Hans Asperger, following research in which he identified boys (whom he referred to as his ‘little professors’) with social difficulties and special interests as having a disorder he named ‘autistic psychopathy’ (Bearer et al., 2023; Czech, 2018).

Asperger was a self-proclaimed eugenicist who, in trying to ingratiate himself with Hitler and the Third Reich, was actively involved in the Kinder-Euthanasie (Czech, 2018). The Kinder-Euthanasie program euthanised (read: ‘murdered’) up to 5,000 children who had been diagnosed with physical and intellectual disabilities (Bearer et al., 2023; Czech, 2018). On that basis, many autistic activists are fighting to have Asperger’s name removed from any diagnosis that pre-dates the DSM-V. It remains the choice of the person diagnosed pre-2013 to identify as Asperger’s or autistic (Smith & Jones, 2020).

Autism is often represented diagrammatically as a spectral line, but in reality it is more like a colour spectrum. This means that we don’t all have the same traits, we don’t all have the same needs, and we don’t all communicate the same way. I sometimes need more information about the complex nuances of relationships and will need to ask my clients more about what I am hearing. Additionally, I will check in with my clients regularly about my understanding and whether they, too, might need things stated differently.

Many people, women especially, are receiving late diagnoses of autism and other neurodiversities. It could be easy to dismiss this as another phase or people jumping on the bandwagon. The truth is that most of the diagnostic criteria for neurodivergence was based on the behaviour of boys, and women and girls didn’t always demonstrate those behaviours (D’Mello et al., 2022; Lockwood et al., 2021; Suckle, 2021). The increase in diagnosis demonstrates better understanding of neurodivergence, improved assessments and reduced stigma about these diagnoses (Russell et al., 2021).

ABA practitioners might assert that current iterations are far less punitive, although the Four Corners story has me questioning the veracity of such assertions. The aim of ABA remains to encourage greater masking of the autistic individual by modifying behaviours perceived in the neuro-conforming world as challenging and forcing children to fit into a neuro-conforming world. Concerningly, one study (Kupferstein, 2018) found that autistic people were ‘86% more likely to meet the Post Traumatic Stress Disorder PTSD criteria than respondents who were not exposed to ABA’.

Lovaas has a broader history of wanting to dampen down a person’s innate sense of self where they do not fit societal norms. He was also a pioneer of gay conversion therapy (GCT) alongside colleague George Rekers (Rekers & Lovass, 1974). GCT, while remaining legal in many countries including in some parts of Australia,* has been recognised as ineffective and ‘constituting cruel, inhuman, or degrading treatment and torture’ (Alempijevic et al., 2020). Both GCT and ABA were borne of the same misguided view that you are better conforming to a world built by and for others than you are being your fundamental self.