My academic background gives me the title of a developmental psychologist. ‘Psychology comes from an orientation of let’s look inside people to see what’s wrong with them,’ says Vikki Reynolds, direct action activist, trainer and clinical supervisor.
Psychology has taught me some useful things, but it got this one very important thing wrong. This thing ignores all the social ideas of ‘normal’ in the therapy room. For example, the assumption that a man would, by default, be attracted only to women and vice versa, or that spoken language is the default way to communicate with another person.
We function in a patriarchal, ableist, neurotypical, casteist, classist, heteronormative society and these dominant social ideas of ‘normal’ are very much present in the therapy room. As therapists we are influenced by these ideas and we often end up reinforcing them through our practice, if we are not careful. As mental health and disability professionals, we have been unwittingly assigned the role of making people look the same (= ‘normal’) rather than acknowledging and celebrating differences.
As someone with a PhD consulting with children and young people experiencing disabilities, differences and difficulties in a variety of contexts, I am often perceived as the ‘expert’ in the room. This is an incredible power and an incredible responsibility, especially because it’s untrue. Thanks to my work, I know now that I am not the expert. And it was the children and young people I work with who are on the Autism Spectrum (which I will refer to as the Spectrum from now on) who taught me this lesson — as did the online Autistic community.
I try to explain through this piece how consulting with children and young people on the Autism Spectrum forced me to examine these ideas of ‘normal’ and taught me how to be an ally to the Autistic community. It is very much a work in progress.
Most of my work has been carried out in conjunction with people who share my identity of being non-autistic — parents, teachers, other professionals, non-autistic peers. I consult with people on the Spectrum to know and understand what would be most helpful to them in the social spaces they occupy. I have the responsibility to convey the knowledge that is given to me by the Autistic community and most importantly, credit the community with this knowledge.
Depending on the age of the child or young person I work with and their social contexts, this is the nature of the work that I do. I go to their school to introduce principles of inclusive education, neurodiversity and autistic experiences to teachers and their peers. Or I advocate with parents, special educators, speech and occupational therapists to teach non-speaking children on the Spectrum to read and either write or type as alternative ways to communicate.
Unfortunately, professionals and schools can spend months and years trying to teach non-speaking children on the Spectrum to speak without introducing them to alternative communication methods. From my interactions with non-speaking children on the Spectrum I learnt that many of them were interested in and enjoyed learning language. They had to learn to read and understand without any insistence on having to read out loud and be able to type/write to respond instead of speaking.
Introduction of typing to communicate and text to speech apps became part of what I advocated for. Apps like these allow for individuals to type text in a text box on the app and the app will convert the text into voice. I have had many fun conversations with young people on the Spectrum typing into speech bubbles on my iPad.
Through this process I learnt to name so-called ‘behaviour problems’ as resistance to and communication about an oppressive situation. For example, what may seem like a ‘tantrum’ in the supermarket or in the classroom could be labelled as a behaviour problem, whereas it is the child telling us that the circumstances (the lights, the sounds, the smells, the crowd, the unfamiliar space or something else) are overwhelming or oppressive.
Professionals have had the misconception for decades that all people on the Spectrum do not have empathy. Generalisations such as these are harmful. As an 18-year-old Aspie** young man consulting with me, once eloquently told me, ‘It’s not as if you (us, non-autistic folk) can empathise with the autistic experience, so maybe it is not a question of empathy?’ This man’s insight has started off many workshops I have done with teachers, therapists and parents. There is always a moment of silence as we let this simple, yet powerful, thought sink in. Everything is somewhat easier after.
There is another aspect of the experiences of people on the Spectrum that we as professionals are not adequately listening to. Atypical sensory processing is experiencing sensory information such as sounds, taste, light, touch in ways different from what is typically experienced. For example, sounds may be heard louder or softer, certain textures and tastes may feel stronger or lighter and therefore more or less comfortable.
Many ‘meltdowns’ and challenges autistic children experience come from sensory overloads. So many parents told me how painful Diwali — with its relentless firecrackers — is for their children. A simple aid such as a noise cancelling headset helped some children suffer less. One child began to request the headset when he went on the scooter with his parent to reduce the noise of traffic. This child would sleep with the headset next to his glasses in the night and on waking, promptly put both on.
As I said above and cannot emphasise enough, these are things that I have learned only from listening to children and young people on the Spectrum, their speaking and non-speaking ways of communicating. I also learned them by reading what actually autistic people are writing online and offline.
At some point in my work with them, I realised that I didn’t have an understanding of what people on the Spectrum might be experiencing. I began looking for and following many self-advocates on Twitter and reading blogs and books of speaking and non-speaking self-advocates, which led me to a whole world of resources.
ASAN — Autistic Self-Advocacy Network and AWN — Autistic Women and Non-Binary Network — both online communities and resources by autistic people are good starting points. The sites Musings of an Aspie and Autistic Hoya, managed and written by Autistic individuals, are among my favourites. Through them I was introduced to a diverse, vibrant autistic community.
From them I learnt the basics of trying to be an ally: I learnt to call ‘Autism Awareness Month’ Autism Acceptance Month instead. I learned that ‘autistic person’ was preferred by most of the online community as opposed to ‘person with autism’.
I learned about Neurodiversity and the Neurodiversity Movement. Nick Walker, Autistic author, educator and speaker defines Neurodiversity as ‘the diversity of human brains and minds — the infinite variation in neurocognitive functioning within our species’ and the Neurodiversity movement as ‘a social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent.’ It helped me understand and articulate my understanding of Autism from a perspective of diversity rather than deficit and try to influence other professionals, teachers and parents into seeing this perspective.
C.L. Bridge, an autistic person, wrote a letter to a former therapist, which was published on the Autism Women & Non-Binary Network. In it, they say:
You can learn to respect stimming. You can learn to validate autistic people’s feelings, even if those feelings aren’t what you expect us to feel in a particular situation, and even if it takes us longer to get over a bad experience than it would take you. You can learn that no matter how odd you think our interests are, they aren’t yours to take away. You can learn to be kind even when you feel frustrated with the person in front of you. After all, isn’t that how you would like to be treated?
We serve the Autistic community best by listening to and observing what people on the Spectrum are telling us. The work of an ally is as much internal as external. Actively deconstructing one’s biases, understanding one’s privileges and internalised ableism, reading and listening, being accountable and doing better every day is our job as mental health professionals and aspiring allies. I have the responsibility of being a true witness to the people who consult with me, to their agency (because there is always agency) and to be conscious of their marginalisation by society.
*Some individuals on the Autism Spectrum use spoken language and some others use other forms of communication mostly through typing. These alternative forms of communication are often referred to as Augmentative and Alternative Communication or AAC.
*Short for Asperger’s, known as one type of autism for the longest time. Recently the professional community abandoned sub-types in Autism and refers to all the experiences as Autism Spectrum. Aspie/Autie (short for Autistic) are self-identifying terms used by certain members of the Autistic community. Not everyone may be comfortable with their usage.
Prathama is a Disability and Mental Health Practitioner consulting with children, young people, families and schools for their well being and working towards nurturing safe spaces for all ways of being.
Featured image credit: Upasana Agarwal