On looking back, the experiences helped to build me up and give me the drive to do disability advocacy. Post-school transition is full of challenges but also gives me opportunities to travel, meet people and do further study and advocacy work.
Flourishing has been defined as growth and good development, to be successful, fulfilled and happy. Three conditions are proposed to get us there: acceptance, authenticity and autonomy. Let us explore these concepts in relation to Autistic people, especially those with complex communication needs (CCN), or severe challenges in speech and language.
Autonomy is the self-governing, with the independence and freedom to follow our intentions and choices, to live according to our preferred ways of thinking and feeling. Authenticity is to be true to ourselves. I would argue that authenticity comes when we and the people around us accept who we are, embrace the person behind the packaging, and value us as individuals with all our own strengths and weaknesses.
So, to flourish Autistically, we need to be able to be true to ourselves, live meaningfully and independently, engage in relationships that build us up and make us happy. We can’t feel safe and will not flourish in environments that fail to provide acceptance and inclusion.
For people with CCN, acceptance and inclusion are harder than most of us like to think. I was asked this question recently with participation in a mentoring program for Autistic students. “When did you decide whether to disclose that you are Autistic?” I typed, “It’s pretty obvious I am Autistic, right? I find busy places and crowds hard to take and need to regulate by doing any number of rituals. I can’t hide this from people even if I wanted to.” Let’s look at the assumptions behind this question.
Why do we need to hide our Autistic selves from the world? We can explain with another A word: ableism. The term refers to a mindset that a disabled person is inferior and worth less than people who are not disabled. Ableism underpins stigmatisation and discrimination, the opposite of acceptance.
As outliers even in the Autistic community, acceptance and inclusion for us living on the fringe cannot be guaranteed. Discrimination is when people think others who are not like them are inferior and do not deserve equal treatment. This “othering” process can be insidious with many implicit biases founded on ableism and prejudice, especially when unfair treatment is justified in the guise of saying that this is what Autistic people want.
Discrimination occurs with the social construction of what constitutes normality and its polar opposite, abnormality, with far-reaching implications.
In our everyday world, this comes in the process of labelling people with certain physical and psychological conditions who fail to meet expected norms of capabilities and behaviour as abnormality. In other words, the medical model of disability is at play, with the diagnosis of Autism Spectrum Disorder, according to the criteria set in the Diagnostic and Statistical Manual (DSM-5), focusing on innate deficits. The result is stigmatisation and assignment to an inferior position. In particular, Autistic non-speakers often end up being segregated and excluded. It is a political issue that needs to be challenged, in entrenched attitudes and power disparity of the prevalent perceptions of innate medicalised differences of Autistic people, especially those with CCN.
Shannon des Roches Rosa said, “Awareness is passive. Acceptance is a choice.” I would argue that there are two kinds of acceptance, acceptance from others (“you’re okay”) and self-acceptance (“I’m okay”). Choice comes from ourselves, not from others. Most of the time, we need both kinds to be authentic and to achieve autonomy, but authenticity and autonomy are still choices we can make.
Authenticity means being true to ourselves, and to be able to show the world our internal landscapes without fear.
In my view, authenticity follows acceptance. When we are accepted for ourselves, despite being different, we can be authentic. The added layer of nonspeaking Autism may make things difficult as we have even more issues fitting in. But it can be done.
Experiences of acceptance, grounded in inclusion, are deeply felt; we instinctively open up to more of ourselves. When we are accepted, we can flap our hands, make weird and not necessarily wonderful noises or do any number of obsessive rituals, and don’t have to feel like inferior goods to be returned.
From my own experience, a method of communication is the bridge that spans the gulf between non-speakers and the majority of people who speak. It is communication which enables other people to realise that we are also on the human spectrum.
It is also communication that helps to dispel prevalent assumptions about non-speakers, the main one being “no speech equals no brains”, as most people think that speech is the only method worthy of consideration.
For instance, Tai Chi teacher Jong said, “Tim, you are good at typing, but I think you should learn to speak more.” Turning to my mum, he said, “It is better for Tim to speak, and hearing spoken language will stimulate his speech development. You speak to him more instead of using typing to talk.”
Another example, I was talking to John, who has never come across anyone using supported typing or facilitated communication (FC) to talk before. Firstly, he asked me about how FC works. I showed him that my facilitator, who happened to be Mum, places her hand on my shoulder to give me the necessary feedback that overcomes my lack of body awareness and the prompt to initiate hand movements for typing. With my finger pointing on the keys of my Lightwriter, this voice-generating device then speaks what I want to say. He asked more questions. “Can the machine speak in Chinese?” I typed, “If you ask me something in Chinese, I will endeavour to answer with typing and it will be in English.” He seemed fascinated. Then, “Does the machine use swear words?” I said, “It will speak whatever I type, but currently there are no four-letter words in predictive texts.” He added, “Perhaps you should put in some.” I said, “Thanks for suggesting.” And he replied, “I will get in trouble with your mother.”
Jong, a good teacher on any count, means well, but has assumed that speaking is a better method. Although he knows I do communication with typing to talk, feels that I would be better off with speaking. Unfortunately, this is not a viable option. I have spent years in speech therapy and other intensive programs to learn to speak since age two, but have not been able to do so. I would say that John showed an accepting attitude. He was curious and his questions about how FC works helped him to further understand this method.
Moreover, from his lighthearted comment on adding some swear words to my vocabulary bank, I knew I had been accepted. When you banter with people it shows that you are feeling comfortable with them; there is no “othering”. Acceptance comes in finding common grounds with the other person and treating them as a fellow human being. Over the years, I have encountered acceptance in many ways.
Acceptance is a gift from the heart. Basically, in meeting my high support requirement, acceptance enables me to navigate life better with taking into account my never-ending need to deal with hypersensitivities, high anxiety, lack of body awareness as well as issues in information processing and movement coordination.
For instance, on a visit to her house in pre-pandemic times, my advocate and mentor, Emmy Elbaum, on seeing me lying on the floor to manage sensory overload, said, “Tim, you can use my bed if you wish to lie down.” By offering a more comfortable place to chill, she has shown acceptance of this unconventional behaviour, and moreover did her best to support me. I’m so grateful.
A further illustration, in response to my requests for feedback on papers for presentations like this one, or from my uni course, Helen Dickinson, another mentor, asked, “What do you wish me to do? How would you like me to do it, online or face to face (post lockdown)? Tell me what suits you best. I will do whatever works for you.” There was no drama in fitting in with my scheme of things.
My experience with neighbours who live several doors down exemplifies what may be seen as inclusion but is in fact counterproductive to meeting my overriding need to deal with hypersensitivities and anxiety. This friendly family took pains to do the right thing by me. Whenever we meet dad in the park, he would insist that I do throw and fetch with his large energetic dog of the hunting breed. Although time and again we have told him that I am in mortal fear of dogs because of their loud barks and unpredictable movement, he has taken on the responsibility to bring out the manly sporting type in me. I wish I can say that with time, I have been desensitised to dogs but sadly, the fact is I’ve become even more wary of large dogs with an appetite for ferocious exercise and excited barking. This is not acceptance; this is corralling us to fit in with the conventional mode of doing things. Fortunately for me, he underwent a hip replacement recently and his wife has been walking the dog. I am not required to do any ball games with her. I hope my neighbour takes his time recovering.
Acceptance comes with an approach that accommodates not only the other person’s needs, but also their preferred choices. Acceptance also means not allowing assumptions or value judgement to sneak in on what they would like to see us do. Acceptance is about supporting the Autistic person on their own terms and letting them decide on what is best.
Any other terms will not contribute to authenticity or autonomy.
My method of facilitated communication (FC) in typing with support has its fair share of detractors, including peak bodies and prominent researchers, who claim that FC is scientifically not valid and called for banning this method for use altogether. It is beyond the scope of this presentation to go into details of this extreme stance. However, the anti-FC position is based on a model of deficits. With quantitative research under strict control conditions mainly done in the 1990s, findings failed to validate authorship of FC users, citing facilitator influence on output. On the other hand, with over a hundred qualitative research using a variety of methods including eye gaze and finger movement during typing as well as using experimental designs taking into consideration anxiety levels, unfamiliarity with setting or tasks required and other Autistic challenges, positive results have provided compelling evidence of authorship of typists.
Their message is loud and clear: we are intelligent, do not dismiss us, acknowledge our right to communicate. In terms of our support requirement for communication, this essential link and lifeline to the world, discrimination comes in the form of misrepresenting our rights. By inferring that our right to communicate our own thoughts are trampled upon, as all support is presumed to come at the high cost of manipulation, supported typing such as FC or Rapid Prompting Method are deemed controversial and invalid.
Just because people with CCN require support to communicate, it is absurd to think that all supported communication subject us to becoming the facilitator’s puppets in every instance. This fallacious argument reasons that depriving people with CCN in the use of supported typing is good for them, as it is a human right not to be manipulated. We need support to communicate; without support, we become unable to “talk” to people. This irrational position has actually done much harm in condemning us to the silent prison of our own recalcitrant body without any means for release.
When we are denied our preferred supported communication method, we have also lost our voice, rendering us unable to connect with people or engage with life, in short a life empty of meaning and authentic participation. Furthermore, without communication, we are very vulnerable in certain situations.
For instance, I was hospitalised with Lemierre’s Syndrome in late 2019 requiring multiple brain surgeries and intensive IV regimens of antibiotics. It was the use of FC that I was able to help the medical staff in understanding my needs, to make requests and have a say in my treatment. FC helped in navigating this difficult period and my recovery. On the other hand, I have been given the short shrift from people questioning the use of assisted typing to talk, with the imputation that my ability and intelligence are in doubt. This lack of acceptance always results in us feeling inadequate, inferior and ashamed. I have had a brush or two with organisations that have taken the stance that FC is invalid and should not be used.
For instance, at a conference run by an international peak body, a presentation I did was given no mention in their daily bulletin or write-ups. This was not the case with other AAC users who were typing independently. On another occasion, I was invited to speak at an Autism-specific organisation, for which I prepared a speech on how nonspeaking Autism impacted on receiving and processing information and interacting socially, and my compensatory tactics to navigate life. My presentation went fine and was well received. However, we later found out from another source that there were some objections raised by detractors of FC from outside the organisation on using a speaker who communicates via FC, a method that has been proven “unscientific and unsound”. Afterwards, when we asked for some commemorative photos of the event, I was told by a staff member of the organisation not to use these photos for public purposes due to external objections to FC. The staff member hastened to add that there was no question on my integrity or authorship, especially when people saw that I typed with minimal shoulder touch, because it was impossible for the facilitator to manipulate the typist by a light touch on the shoulder. However, because my use of FC was called into question, although they did not come from the organisation, my speech has been devalued.
The banning of FC by certain peak bodies has contributed significantly to the negative appraisal and dismissal of the voices of people with CCN. In most cases, FC has been adopted after careful consideration of all options and has remained the preferred mode of communication because FC permits more flexibility and power of expression.
The denigration of FC constitutes covert discrimination and has done extensive damage. Since our preferred method of communication is considered invalid, we, as people on our own rights, also feel invalidated and dismissed. If we engage in this communication method, we are made to feel that we have participated in unethical practice that involves manipulation and exploitation.
Additionally, when we can’t measure up to expectations that speech is the gold standard in communication, there is little hope in our being authentic with expressing our innermost feelings and intentions as we become mired in a sense of inferiority. Without the means for self-expression, authenticity becomes the first casualty.
Other common deficit theories on Autism include weak central coherence or a compromised capacity to see the forest for the trees, as well as impaired executive functions or an inability to think, plan and coordinate actions well.
On the other hand, the emergence of the neurodiversity movement has seen the rise of many Autistic voices, including those of non-speakers, that have deconstructed these frameworks of inferiority to emphasise that Autistic people can empathise, see the total picture, think ahead and plan in different but just as effective ways as neurotypicals. Autistic functioning is being lauded as ways of being based on strengths instead of deficits, drawing attention to our superior performances in areas like memory, visual-spatial skills and creativity.
In rediscovering our strengths and embracing our ways of being that differ from but is just as good as others, Autistic people have found self-acceptance and affirmation.
We are beginning to liberate ourselves from the straitjackets imposed upon us to be “normal” and the need to follow neurotypical processes which may feel distinctly unfamiliar and instinctively uncomfortable, and explore new grounds in becoming authentic and remaining true to our Autistic selves.
With understanding of neurodiversity, I am more able to see that although my brain may function differently and I approach life in unique ways, I am still okay. With this viewpoint, I can explain to people about how I do things that help my physiology. For instance, I usually bring some written work with prerecording to classes, and once someone asked why I always take the trouble of doing so much homework. I typed that because I don’t speak and can’t type that fast, I need to prepare prerecorded material to join in. That answer was satisfactory, with the classmate then realising I wasn’t trying to impress or to show other people up. Like John, for example, people may not have met non-speakers like me before, and their lack of prior experience translates to an inability to see things from our perspective. We have the responsibility to educate them with our different needs and approaches.
In coming to terms with neurodiverse ways of being, my new-found confidence has meant that I am freer to be myself. Even though I may need to lie down to chill, avoid eye contact to hear better or obsess to manage my overload and anxiety, I am still okay. This realisation brings the reward of self-validation; flourishing will hopefully follow soon.
It has been a long and fraught journey towards authenticity and autonomy in the case of people with CCN, but I can see acceptance and self-acceptance increasing with travel distance. I am also learning
to see my own strengths and to use self-talk in affirmation of my worth. For instance, with an asset-based approach, another A word, I have been telling myself that “I am resilient. I bounce back from slights and setbacks. I can make it and I will flourish.”
People with CCN are continuing to lift up our voices with our stories and unique perspectives of life. These stories will add value and contribute to the good fight for social justice and equity. So let us join in to advance the understanding and acceptance of our different abilities.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.