I am a U.K. based Speech and Language therapist (SLT) who is a Newly Qualified Practitioner (NQP). I work with autistic children. I am also Autistic. 

Just a few months into my career, two things happened:
1) I found out I was Autistic, and
2) I discovered the pro-neurodiversity movement.

My journey to realising that I was autistic is similar to that of many women, in that I was placed in the mental health system as a child. For the next 15 years, I was given various diagnoses – one of these being Borderline Personality Disorder (BPD). My sensory and emotional difficulties were pathologised and misdiagnosed. What we know now is that there is a multitude of evidence showing how often autistic girls and women are misdiagnosed. But, that’s not what this blog is about. 

What this blog will be about is how I found the pro-neurodiversity movement, and how its journey has transformed my practice as an SLT. 

When I graduated I was surrounded by classmates who were getting their first jobs with relative ease, in that many were successful within three interviews. Some even in their first. It took me seven interviews to acquire my first job. What I didn’t know at the time, was that I was autistic. Interviews aren’t designed for people like me. I always associated my interview difficulties with my mental health. With each interview rejection I received, the more anxious and hopeless I became. It was debilitating. It would take me days to recover physically and mentally from each interview due to burnout. After my first few rejections, I sought advice from my local job centre. They suggested to ask for interview questions in advance.

My neurodivergence manifests as acute anxiety whereby multi-part questions overwhelm me, I don’t remember the first part of the question, my processing shuts down and I don’t know how much information to give – so I end up giving too little, with no prompting from the interviewer. Having the interview questions in advance would potentially help with this, but my internalised ableism told me “if you ask for adjustments they’ll think you’re incompetent”. But I tried it anyway.

When I was invited to an interview for my dream job with the NHS (National Health Service, the publicly-funded healthcare systems of the United Kingdom), I emailed them my adjustments which included receiving the interview questions prior to the in-person interview. I arrived at the interview 30 minutes early and mentioned my adjustments to the administrator. I masked the rising panic attack I was trying to contain and just sat smiling and monitoring my body language until there were two minutes to go for my interview. The lead interviewer came out and led me to the room, handing me questions on the way in. I completely messed up the interview and fell into a shame spiral. I didn’t get the job. This is just one example of the bad interviews I had. What troubles me most about this event is that all my interviews were with other SLTs, professionals who, in theory, are experienced and knowledgeable about communication difficulties. The people interviewing me were meant to be the experts in making information accessible to others. It is no wonder that only 16% of autistic adults are in full-time employment (National Autistic Society, 2016)

Anyway, after 4 months of interviews, I finally landed a job. This particular job entailed working with autistic children. 

Now before I knew I was autistic (and before I discovered the pro-neurodiversity movement) I approached my SLT practice like any other NQP; I desperately tried to prove my worth. I did this by trying to apply everything I learnt on my degree; every guideline, every goal, every assessment I should be using, every social skill I should be teaching. I looked at therapists around me and put them on pedestals. Who was I to question the practices of professionals? So I contributed to multidisciplinary team meetings, EHCPs (Education, Health, and Care Plans) using the terminology I was taught from legislation and guidelines. Included in this terminology were things like functioning labels, person-first language, descriptors including ‘appropriate behavior’ and ‘inappropriate behaviour’, and by dictating, “here’s how one should act”. I wrote goals for the autistic children I was working with and targeted areas like eye-contact, turn-taking, and social skills. 

But then I discovered I was Autistic. And then I found the pro-neurodiversity movement. I began to see everything through a different lens. I threw myself into current research, joined Autistic communities, and started to learn about neurodiversity frameworks. I learnt about ableism, including my own. What I found was mind-blowing. For the last 5 years (the length of my training), I had been looking at everything in the wrong way. What I found were human rights violations, coercive practices and dehumanisation against neurodivergent communities. Simultaneously, I reflected back on my own life and the treatment I had received from professionals; I’d been excluded and discriminated against at every level – at home, at school, at college, at university, in the workplace, by psychiatrists and other mental health professionals. And I was doing some of the very same things that were done to me by these professionals, to the children I served. 

I have always had a strong sense of justice, which I see in other Autistic people. The pro-neurodiversity movement is so intuitive for me. I recently started to advocate in any way I can. I learnt that self-advocacy does not always look polite. I have been accommodating people’s needs my whole life. I’ve been tone-policed. I’ve been gaslighted. I’ve been encouraged to be less autistic, to mask, to “be like everyone else”. Well, the costs to masking are high, which is evident in current research – anxiety, depression, self-injury, suicide, and I’m familiar with psychiatric wards.

Once I started to accept and embrace my autism, amazing things happened. I stopped masking as much. I allowed myself to stim in front of people and show excitement (clapping my hands with a high-pitched “eeeee”). I began to speak up in situations that I would have previously silenced myself in. I began to communicate my needs. 

I began to support my caseload differently. 

I threw out the rule-book and started adopting SLT practices that are in line with pro-neurodiversity. I saw prejudice everywhere. I spoke up in a highly-regarded evidence group and critiqued/challenged a published assessment measure. I explained that its descriptors were offensive to Autistic people:

“demonstrates expected inhibitions”, “disagrees in a respectful way”, “engages in topics that may be outside his/her interest”, “uses rate, tone, volume, and overall flow of speech that may stand out as robot-like”

I was met with defensiveness and hostility, to ‘evidence’ being thrown at me, which ultimately led to me exiting the group. It was my pro-neurodiversity allies that supported me through the shame I felt for speaking up. Who was I to challenge professionals who’d been practising for decades? Who was I to question the research? What I learnt afterward was interesting. Once I did some reading about the ‘evidence’ of this assessment measure, I found out that it was published by a ‘predatory publisher’ (I won’t name) in accordance with Beall’s List. What I’m learning is that not all research is good. 

I encountered more prejudice not long after this in a training session I received about an autism program/intervention. The language used by the trainer was not in-line with pro-neurodiversity (person-first, functioning labels, sweeping statements about autism, disparaging comments). So much of this ‘expert training’ is delivered by non-autistic people. 
My work is hard, but I am committed to change.

Note about Beall’s List: Beall’s List was a prominent list of predatory open-access publishers that was maintained by the University of Colorado librarian Jeffrey Beall on his blog Scholarly Open Access. The list aimed to document open-access publishers who did not perform real peer review, effectively publishing any article as long as the authors pay the open access fee. Originally started as a personal endeavor in 2008, Beall’s List became a widely followed piece of work by the mid-2010s. Its influence led some publishers on the list to threaten defamation lawsuits against Beall, as well as to lodge official complaints against Beall’s work to the University of Colorado. As a result, Beall deactivated his blog and the list in January 2017. Source: Wikipedia

3 Responses

  1. I enjoyed reading this and am currently recording lived experiences of NHS staff who identify as neurodiverse and/or having a disability. It would be great to ask Faye if they are interested in learning more about the project with view to possibly participating
    Kerry Pace
    Diverse Learners

  2. Is there much research around eye contact as a slt goal – as it is very prominent in our daughter’s educational plan at present and they derive the plan from slt goals for her within her nhs plans I think. I was trying to ask for it to be dropped from being almost a goal for improving eye contact but I’m not making much progress. Tia

    1. Just a Few of the Countries Where Eye-Contact is not always considered part of Cultural Norms:
      China, Japan, Iran (gender interactional related), Vietnam (gender interactional related), Cambodia, Indonesia (disrespectful to elders), Kenya (disrespectful to elders or higher status), Hong Kong, South Korea, Thailand, Australia (sometimes), Canada (sometimes), Saudi Arabia (gender interactional related).

      Demanding eye-contact from Autistic people puts them into a fight or flight response (activation of the amygdala).
      Hadjikhani, N., Åsberg Johnels, J., Zürcher, N.R. et al. Look me in the eyes: constraining gaze in the eye-region provokes abnormally high subcortical activation in autism. Sci Rep 7, 3163 (2017). https://doi.org/10.1038/s41598-017-03378-5

      Many (Autistic people) say that looking others in the eye is uncomfortable or stressful for them — some will even say that “it burns” — all of which points to a neurological cause.
      Massachusetts General Hospital. “Why do those with autism avoid eye contact? Imaging studies reveal overactivation of subcortical brain structures in response to direct gaze.” ScienceDaily. ScienceDaily, 15 June 2017.

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