Autism Interview #105 Part 2: Sandra Jones on Autism Slurs, Teaching, and Advocacy

Sandra and her husband

Professor Sandra Jones is an autistic mother of two autistic sons and Pro Vice-Chancellor (Engagement) at Australian Catholic University. She has studied autistic adolescent development, the impact of diagnostic labels, and the development and evaluation of social support and peer support programs.

Last week, she shared her experience obtaining a late diagnosis and how she is raising her sons to achieve a positive self-image. This week Professor Jones discussed the casual misuse of autism as a slur, her path to employment in higher education, and leading a more peaceful advocacy movement.

In a recent article, you said that using the word “autism” as criticism “simplifies our challenges and ignores our strengths by limiting the definition of what autism is and what autistic people can achieve.” What specific challenges do you encounter that are easy for others to overlook?

I think most people are not aware of the sensory challenges that autistic people experience. I am fortunate that I work in an office that I can alter (in some ways) and that I work for an organisation that allows me to do so. Bright lights hurt, so I had the lights disconnected in my office; cold air blowing on me hurts, so I had the air conditioning vent sealed up. However, I can’t stay in my office all day. I constantly have to attend meetings in offices and meeting rooms that are too bright, too loud, too open – and I find it really hard to focus and to manage my reactions to the sensory stimuli.

Most people are not aware of how draining social interaction is, and that physical contact can be excruciatingly uncomfortable. A day full of meetings can be so exhausting that I get home from work and curl up under my blanket. A team-building activity where we are all standing toe-to-toe can make me feel like I am having a panic attack. Sitting in an airport lounge with all the noise and lights and movement can take up all my sensory processing capacity so that when someone I know smiles and says hello I may not recognise them.

However, I have also come to realise that it is not just that neurotypical people don’t know how we experience the world; I was not aware that neurotypical people DON’T experience the world the same way. I remember watching a video a few months ago on over-stimulation and being surprised to discover that this is not the way the world actually is. That was a life-changer for me. Now I say to people: the lights in that room make me anxious and give me a headache; I need to go and hide in my office during the tea break; I need to have times in my day with no meetings; I don’t see you when you wave at me from across a crowd.

How did you become interested in/qualified for the current position you hold at Australian Catholic University? What do you enjoy most about your work?

I certainly didn’t follow a direct path to my current position, but rather a complex route with unexpected turns, bumps and potholes. I did not like school at all – I loved the schoolwork, but not the constant noise and chaos. I was teased and bullied, and thoroughly confused by all the social rules. By the time I got to high school, I had learnt to mask all the thoughts and behaviours that weren’t ‘normal’ and mimic the kids around me. However, I went from being top of my class in every subject to failing in most – I was completely exhausted by the social interaction and the energy required to behave like everyone else.

I left school (and left home) when I was 16 and started work in a supermarket. I held a range of short-term and part-time roles – everything from working in a food hall to selling flowers in an industrial estate – and felt like I was a failure at most of them. I finally enrolled in night-school and got my university entrance equivalence and enrolled in a Bachelor of Arts in English Literature, with the aim of embarking on my childhood dream of being an English teacher. I loved university! So much to learn, and no need to interact with people outside of classes, and progressed through a series of degrees in marketing, health promotion, public health, and education.

I completed my PhD and started working as a researcher in a university. My research focused on helping people – developing ways to improve community health and wellbeing, addressing stigma and social norms – but most of it could be done from a quiet and secluded office. I ran a university research unit for more than a decade and was really fortunate to have people working for me who understood my challenges (even though I didn’t have a diagnosis) and could do a lot of the ‘people’ parts of the work that I struggled with. About two years ago I was offered my current role, which was a logical progression from a career of doing research and interventions with community partners, but is not without its additional challenges (such as a dramatic increase in the number of meetings and social interactions).

What I enjoy most about my work is knowing that it is making a real difference in people’s lives. My current role as PVC Engagement means that I get to lead a team of incredibly talented and passionate people who are really committed to building a better world. Our university is quite unique in the amount of support it provides for both students and staff to work in partnership with local communities, to share their skills with others, and to develop an understanding of the many assets and skills of people in the communities they are working with. I get a real kick out of hearing students talk about how they reluctantly commenced their community engagement placement, but found it a life-changing experience and now continue to work in the community.

I am also extremely fortunate to work for an organisation – and for a manager – that accepts and values neurodiversity. I have never been made to feel that being autistic is a problem or a weakness, and many of my colleagues instinctively make adjustments for me (such as turning down bright lights or asking before they give me a welcome hug).

What mistakes do you see neurotypical autism advocates make?

I try very hard not to judge other people and not to see people as making a ‘mistake’ because they do things differently to the way I would do them (I don’t always succeed!)

One of the things that disturbs me is the conflict and negativity that you see between different groups of advocates. For example, I see autistic people criticising parents for speaking on behalf of their (young or non-verbal) children. I also see parents criticising autistic people for speaking on behalf of the spectrum of autistic people.

I was talking to my oldest son a few weeks ago about the debates regarding person-first versus identity-first language and how heated the conversations can get. He made the very valid point that the energy we use up arguing about language between ourselves (autistics and allies) would be far better spent advocating for greater acceptance and inclusion for autistic people.

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2 Comments

  1. Francey Graham

    Reply

    I have read both these articles , and found the information enlighten,I am the mother of a son who has struggled for years with social situations . His daughter has been diagnosed at 5 as being Aspergers , I am interested in why the prof left home at 16 years and if there are other members in her family who have a A S D . In doing research into my family of origin , I have found there are “family members who have been “different “
    In a family reunion ,a distant relative recognised family featured in my granddaughter
    there appears to be a number of family members who are different in their family too
    Is there research being done in this area ?
    What are the statistic for numbers of families members who are on the A S D ?,
    Kind regards Francey Graham

    • Jenna

      Reply

      The message below is from Sandra:

      Hi Francey,

      I am not a genetics researcher, but I know there is a lot of work being done in this area. There is definitely evidence of a genetic element to autism, but I believe the exact nature of this is still being explored. I do know from my interactions with the autistic community that this is definitely the case – for example, I know many families with two or more autistic children. I also know many adults (myself included) who were diagnosed after their children were; and generally after a lifetime of feeling ‘different’ or ‘faulty.’

      It is difficult for most of us to definitively determine whether there is a ‘family history’ of autism, given the relative recency of the formalisation of the diagnosis (autism was first recognised as a developmental condition, rather than an emotional disturbance, in the 1980 DSM-III). I am always nervous about the idea of retrospectively diagnosing people based on family recollections of behaviour, given the complexity of autism and the other conditions that are often misdiagnosed.

      To the best of my knowledge there are no members of my extended family with an autism diagnosis but – like many families – there are people who could be described as ‘different’ or ‘eccentric.’ However, in my immediate family I share a diagnosis with both of my children.

      In relation to why I made such significant life changes at the age of 16, the answer is complex. As a child I did very well in school from an academic perspective, finishing primary school at the top of my class and achieving perfect grades across the board in junior high school. However, I struggled socially; I did not understand the rules of social interaction, struggled to make friends, was bullied, and generally did not fit in. I increasingly found going to school stressful and experienced a series of medical issues which, in hindsight, were almost certainly stress-related.

      By the time I commenced senior high school I was a very confused, isolated, depressed and anxious person. My grades suffered and I began to really struggle. Looking back on it now, I would say that it was my first experience of ‘autistic burnout.’ I was physically and mentally exhausted by years of trying to fit in, to look and act like other students, and to hide my autistic traits; not knowing that I was autistic meant that I interpreted this struggle as a failure on my part to be able to achieve the fundamental aspects of being a ‘normal person’ that all my classmates seemed to achieve without any effort.

      This is the reason that I think it is so important for adult autistics to be open about their diagnoses, their challenges and struggles (and their successes). I hope we can create a world where autistic people can thrive; recognising their needs are valid and that they are wonderful, successful autistics and not faulty neurotypicals.

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