Between June 2020 – Feb 2021, I participated in over a dozen online surveys relating to adult autistic experience (more info here). Most were research projects focused on the very things I was living at the time – mental health & suicidality, autistic burnout, financial not-so-well-being, among others – and the surveys provided me a vehicle to process my thoughts as well as contribute to advocacy.
Below are my responses to a survey I completed 6.11.2020, conducted by Autism Tasmania. The results of the survey were intended to inform a Tasmanian autism training for counsellors, social workers and allied health professionals (e.g. psychologists, occupational therapists, speech therapists). It was an opportunity for autistic adults to offer advice to the professional community, based on their lived experience.
Similar to the ARCAP survey in my previous post, the design of this survey was based on clear, open format questions that were easy to engage with, and specifically welcomed personal experience, in the author’s own voice. My only criticism is that the questions focused on what was ‘beneficial’ for the person in dealing with health carers, without asking ‘what doesn’t work?’. I suppose there was some deliberate ‘growth mindset’ psychology behind this strategy, eg looking to elicit constructive suggestions; but I certainly felt there was still a professional reluctance to admit that health carers were doing anything ‘wrong’. In reviewing any system, it is equally important to know what is contributing to, or perpetuating, problems – especially in systems of human care.
NB: All my responses are only in the context of my particular subset of life factors: Older autistic adult, very late diagnosis of Aspergers (50+), no physical disability but physical health failing, father separated from children, lifetime of chronic depression, anxiety, and poverty.
My answers are also particular to the professional supports I was dealing with at the time – psychologists and GPs. I was in a state of extreme stress, emotional breakdown and physical collapse, and frustrated at how few appropriate supports were available. At this time, I’d had several interactions with ‘professionals’ who were either dismissive of my autism or had little or no understanding of autism in the first place. Often I found myself having to educate the ‘expert’, based on my own self-guided deep research. This is apparently not uncommon among autistic adults looking for help.
In the 2 years since I completed this survey, many more autistic adults have been speaking up about their experiences across all areas of life, including the ‘health sector’. Many health professionals remain dismissive of or uneducated about autism. There has been such a swell of autistic voices around the world that health systems are struggling to catch up. Thankfully there is also a swell of health professionals working within the system who are realising – surprise, surprise – they are autistic themselves; many are now challenging outmoded stereotypes & distortions of autism in their field, and developing autism-sensitive practice. This all requires deep paradigm shifts at a human level, because it addresses human communication, and essentially how we treat each other as a species.
Autism Training for Counsellors, Social Workers and Allied Health Professionals
1. Understanding Autism
Based on your experiences, what are the most important things about autism that all counsellors, social workers and allied health professionals should know?
As a foundation, for any individual to gain meaningful insight into autistic experience, they really need to be:
- motivated by a genuine interest in how other human beings experience ‘reality’.
- willing to bring deeper thought to socially-pervasive languagethat defines experience in terms of ‘typical’ or ‘normal’.
- prepared to step beyond / suspend / reorganise their own habits of thinking, judgments, sense of authority (regardless of professional training), modes of communication and value systems if they are challenged.
It is increasingly obvious that a large portion of autistic people’s difficulties are due to deeply-habituated and outmoded paradigms in society – habits of thinking that promote self-interest, division, competitive (aggressive, survival-based) behaviour, fear of Other…reactive rather than reflective thinking.
These self-destructive habits are so entrenched that the culture accepts them as ‘normal’, a baseline driving all the overarching social constructs (politics, religion, education, commerce etc) and distorting human common sense. As Steve Silberman illustrates so clearly in his ‘Neurotribes’ book, these dominant paradigms have resulted (and continue to result) in the unnecessary suffering, unfulfilled life potential and premature death of many millions of human beings, including autistics. Many of us, due to our biology, simply cannot conform to this imposed hierarchical mode of reality.
It takes effort to train one’s thinking beyond these pervasive social constructs, and largely human beings prefer to stay within the parameters of their own familiar perceptions, however highly-accomplished, enlightened or authoritative the individual considers themselves to be.
In my 27 years of teaching, my primary foundation was that an effective teacher is always learning, because every student is a human individual with a unique perspective to offer, and teaching at its richest is a process of inter-relatedness, an exchange of Being.
So professionals, and human beings universally, need to shift some very rigid thinking. The autistic experience is a litmus to the species; the evidence is clear that autistic people are innately motivated by humanitarian values, profound sensitivity of being, deep feeling, critical thinking and innovation for the collective benefit of humankind.
Anyone acting in a professional role of care (health, education, social services etc) should be willing to adapt their own thinking toward encouraging a society that welcomes these much-needed human attributes. In fact, in many ways this shift in thinking would be a return to the original ethics & values of professional health care.
In more practical terms:
At its core, autism describes magnified sensitivities. It is important to think of ‘sensitivity’ beyond the five common senses, as describing all states of perceptive awareness. It can include emotional, kinesthetic, intuitive and even psychic sensitivities. If an autistic person describes an acute sensitivity to some seemingly small or inconsequential event (or “nothing to worry about” / “it can’t possibly be that bad” according to conventional attitudes), remember that for them the experience is likely to be felt far more intensely than you might imagine. Demonstrate that you can step beyond your own judgments of what you consider “manageable”.
Some sensitivities might seem more abstract and harder to quantify or articulate. Remember that every human body is a complex neurobiological system that is constantly monitoring its immediate environment, receiving and translating millions of signals in each moment in order to navigate and survive. Human brains have to block out most of these signals in order to avoid overload, and so our conscious attention is generally very narrow.
MRI scans have shown that autistic brains often have more synaptic interconnections, meaning environmental signals are processed in greater complexity. This magnifies the amount of information being processed, the number of associations the brain formulates about the information, which in turn amplifies the conscious awareness of what the nervous system is experiencing. Autistics often report being acutely self-aware, and it is no wonder that they also report extreme exhaustion – being so constantly conscious of your own nervous system requires a huge amount of mental energy, especially in an environment of chaotic demands and contradictory expectations.
To understand an individual’s particular sensitivities, you need to approach them with sensitivity.
NB: Whatever you perceive an autistic person presenting on the surface, is likely a tiniest fraction of, and often obscuring, any number of sensory experiences they are trying to manage internally.
What are your top three tips that you would give to a counsellor, social worker or allied health professional who works with people on the autism spectrum?
1. Do not assume or jump to conclusions. Always ask thoughtful questions about what the person is experiencing, with a sincere desire to understand. Never be dismissive, or think you know better – any human being is the expert of their own experience because they live it. Demonstrate that you are human, not separated by ‘authority’, and show that your support is genuine.
2. There is no one-size-fits-all in autism. Treat every autistic ‘client’ as a new person with their own unique cluster of experiences and ideas of reality, nuanced by all factors in their life, not only autism. Treat every new person as an opportunity for you to learn, a mystery to be explored. Whatever your training, your academic profile or your years of professional experience, remember that most academic and clinical observations of autism (and subsequent education strategies) have evolved from non-autistic frameworks – meaning they are often incorrect or incomplete. Do not rely on stereotypes, popularised or academic – stereotypes always reduce and diminish the individual. Be flexible and adaptive (autistics have to be deliberately adaptive every moment of the day), and don’t impose your own agenda / singular methodology / belief system in an effort to maintain a sense of authority.
3. Listen. And really listen. For autistics who can articulate in words, they will tell you exactly what they mean, so don’t try to ‘read between the lines’. If you’re unsure what they mean, ask thoughtful clarifying questions until they feel they’ve been understood. If the person can’t articulate in words, it is important to remember that all behaviour is a form of communication. Be open to subtle signals and non-verbal experience, while continuing to check your impressions (see 1).
2. Your needs, expectations and experiences
What are the practical aspects of appointments (such as location, length of appointment, layout of the room etc) that help to make appointments beneficial for you?
Location: Somewhere quiet, preferably away from public activity. Somewhere that is nearby (I live in rural SE Tas) – there are times when a 1-hr drive to the city is difficult if I’m not functioning physically or emotionally. City appointments are too much of a sensory assault if I’m already in a state of distress, or if I’m feeling emotionally raw / fragile after a session with a psychologist or doctor.
Length of appointment: This is particularly frustrating. A 45 – 50 min session with a psychologist is never enough to adequately ‘unpack’. Most processes in life take me longer, the limited appointment time creates a lot of internal pressure to rush, and often the session ends just as an important insight emerges. This is highlighted by the long waits between available appointments – to just get started on something, while already trying to address previous matters, and then having to contain it for up to a month, adds to the distress when you’re in a period of crisis & need help.
Physical environment: Waiting rooms – Quiet, and separate from the busy public activity of the reception desk. Definitely no radio or tv in the background. Despite music being a personal passion, I do not like having music forced on me in public situations – even gentle music in a waiting room can be an irritant if I’m not functioning well. Consultation rooms – private eg insulated from outside traffic noise, but also from adjoining rooms. If I can hear other consultations through the wall, I’m less inclined to feel a sense of privacy in the session. Seating should be padded rather than hard plastic, and arranged in a way that doesn’t suggest a hierarchy or power dynamic between the practitioner and myself. Not overheated or stuffy, but open windows may allow outside noise, which is distracting.
What communication styles or strategies help to make appointments beneficial for you?
Reception: Willingness to provide explanations and answer questions patiently, without being dismissive or brusque. An attitude of listening, not rushing.
Practitioners: All of the above. First and foremost, I want to feel listened to and feel that my experiences are taken seriously. I also like to be asked clarifying questions about my experience because it demonstrates interest. I like communication to be authentic, intelligent and empathetic. I like to be met as one human being to another, not from a clinical distance or as a ‘client’ or ‘stakeholder’. I like language that is specific, not generalised or lazy, because describing experience is complex and subtle. I like instructions or suggestions to be explicit. If a process is being described, I need it to be described systematically, providing detail of each step, so that my patternmaking brain can form a structure. I need to have a clear sense of context, eg if someone pre-empts a question by giving me the context of their question, I don’t have to expend extra mental energy wondering why they are asking it or trying to imagine their underlying intention.
Sometimes a visual illustration, an analogy or a direct example from life will help me build a cognitive shape or context for the information.
I have a strong aversion to jargonistic language, to overly clinical terminology, to vacuous ‘positivism’, and references to popular slang or mainstream culture that assume I engage in that culture (I don’t watch tv / do social media / give any attention to fashion or sport / follow celebrity culture or engage in politics etc). I was shocked recently when a senior psychologist tried to explain the evolutionary role of anxiety to me by asking me to watch a YouTube animation. I had already made it very obvious that I was in a state of intense distress and overload, and it took me a few seconds of internal confusion before I could tell her to turn the sensory assault (TV) off and ask her to summarise the message verbally herself. Part of my confusion was related to my capacity to trust, as this was only our second session, and I couldn’t understand why an intelligent professional wouldn’t communicate her meaning in her own words.
I am also especially sensitive to obvious communication formulas like “so what I’m hearing you say is…” Reflecting back can be a useful tool for clarifying when used with subtlety, but I think a lot of Aspergers would think it’s more effective to ask directly “When you say ……, do you mean …….?”. A question is an invitation to offer more information. Otherwise, the autistic person may be spending time wondering why the practitioner is just repeating what they’ve clearly said themselves already. Lastly, I cannot stand communication that adopts a patronising tone, however well-intentioned. I expect an adult therapist to talk to me like I’m an adult, not a child or an idiot.
What sensory considerations help to make appointments beneficial for you?
What makes a fundamental difference is when a practitioner / person first of all thinks to ask: what are you sensitive to right now? Many autistics confirm that their sensitivities are entirely context-dependent and fluctuate broadly depending on many factors. If someone asks me the clarifying question first, they demonstrate that they care enough to want to know, which can provide a better foundation for trust in the interaction.
It’s important to remember that our nervous system is an integrated system, and that while one sense might dominate an experience (say, loud noise = audio), the body is also having a kinesthetic experience, which may not be as obvious or easy to define.
As mentioned earlier, most of my own sensitivities (in the context of appointments) are to do with audio, but they relate directly to my kinesthetic and emotional experience – eg calm environments, no music / tv / radio. If I’m in distress or not functioning well then my kinesthetic sense is amplified, meaning I want as little public interaction as possible, so a feeling of privacy, and being away from the public activity of the reception area, is especially important to how I establish trust during the session.
What do you think are the most important things a counsellor, social worker or allied health professional can do to make themselves suitable for people on the autism spectrum?
Being an autistic person in the first place would be a great place to start. Otherwise, be authentically, and openly, human. Many autistics will immediately sense dissonance if a person is being insincere, patronising, lying or pretentious. It seems to be a neurological radar, that will equally sense the harmony of someone who is being genuine in their approach, and potentially trustworthy.
In Question 2, I described some fundamental attitudes & habits of thought I feel are necessary for beginning to understand autistic experience. They are also skills that can benefit any thinking, feeling human being (that’s all of us, right?). They are habits of living and communicating motivated by humanitarian and ethical values.
Remember that, as human beings, we are all trying to make sense of existence. The more we can openly admit to this mutual fact with one another, the more opportunities we create for compassionate understanding, for authentic conversations about our sense-seeking lives.
In terms of training, more autistic adults should be directly involved in sharing their lived experience – in person, not just via surveys, and from as diverse a range of life experience as possible. Practitioners in any field need to seek out a broad range of firsthand autistic accounts if they are to develop a more complete sense of how complex and varied autistic experience can be.
So: Be genuinely interested in learning more. Don’t only read academic and clinical accounts – science is just one method of description, and is inevitably distorted by human bias. Data is always dependent on interpretation. ‘Evidence-based’, the modern catchcry, often does not allow for the infinite variables of an individual’s lived experience. If you’re working with articulate autistics of any age, take the opportunity to further investigate research findings, by asking if the research correlates with their own experience.
Stop using language that reinforces attitudes of deficit, such as dysfunction, cure, disorder, behaviour problems etc. Language reflects the thinking behind it. Certainly there many ways autism can be disabling, but autism is not an illness, to be fixed or eliminated. One doesn’t ‘have’ autism.
Labels: remember that for many autistic people, the DSM-5 decision to absorb ‘Aspergers’ into the more generalised (= vague) ‘ASD’ has been especially unhelpful, as the term Aspergers defined a particular profile distinct from other expressions of autism, and as such provided important parameters for accessing resources and developing an identity. ‘High-functioning’ is also an inaccurate and misleading term. It ignores the fact that ‘ability to function’ is always contextual, and ‘inability to function’ is often an invisible struggle, constantly contained and privately internalised, despite outward presentation of seeming to function. As with so-called ‘high-functioning’ depression, if this constant strain of internalised struggle continues unacknowledged, it is likely to accumulate as autistic burnout, depression and suicide, physical distress, isolation, relationship breakdown etc.
The label ‘ASD’ is reinforcing the public definition of ‘disorder’ as illness, rather than pointing towards a compassionate definition. Often autistics experience states of disorder in response to environment: a chaotic world and incompatible societal expectations.
The ASD label also homogenises autism, when in fact it is a very complex universe of human experience that, by its own defining features, requires specificity and attention to detail.
Actively research beyond your usual resources, and be discerning.
BOOKS :
Often ‘help’ manuals are written by non-autistic professionals, and so may contain the same non-autistic assumptions & expectations that distress & exhaust many autistics on a daily basis. One exception is Tony Attwood’s ‘Complete Guide to Asperger’s Syndrome’, which succeeds at its core due to the non-judgmental language and attitude of its author.
Essential reading: ‘Neurotribes’ by Steve Silberman, particularly for its illustration of human gullibility and the fickleness of ‘accepted wisdom’ in health care throughout history. ‘Uniquely Human’ by Dr. Barry Prizant, for it’s central focus on the humanity of the autistic individual.
Many of the popular autobiographies by ‘celebrity autistics’ (Temple Grandin, John Elder Robinson, etc) are worth reading, and may provide a worthwhile starting point, but they are often written by people who still reflect middleclass mainstream values, and who have built a successful career around their autistic voice. Sometimes, because of their popular impact, these models of autism reinforce autistic stereotypes in public perception that are too limiting.
I often try to find autobiography that delves deeper into less conventional aspects of autistic experience, such as Donna Williams’ remarkable series of books including ”Nobody, Nowhere’, ‘Somebody, Somewhere’ and ‘Autism And Sensing’. ‘An Asperger Marriage’, co-written by Gisela & Chris Slater-Walker, is an excellent shared account of their experiences of relationship, without resorting to pop jargon or cliches.
Jessica Kingsley Publishers (UK) specialise in autism resources across the life spectrum.
YouTube: Try to find autistic presenters who aren’t putting on a performance, who can intelligently articulate their experience, and who are prepared to challenge cliches within the autistic community itself. Sarah Hendrickx, an autistic trainer, consultant, author and assessor from the UK, has several excellent professional presentations online.
Websites: Beware of autism websites that reinforce unhelpful attitudes (such as ‘autism needs a cure’, ‘all Aspergers men are insensitive bastards’, etc).
AVOID: Believing popular media representations (Big Bang Theory, Love On The Spectrum, Rain Man etc etc). Entertainment culture inevitably distorts reality.
3. Your strategies
Are there things you do before an appointment that help to make it beneficial?
If I’m engaging with a new professional, where possible I try to find information about them online. If there is an email contact I will try to communicate directly with the professional so as to provide background and context for my need, and to save time in our initial session. I DON’T LIKE: Being forced to make an appointment before being able to have a better sense of the professional’s expertise, especially if there’s an out-of-pocket expense.
Where possible I tend to take appointments that are after 10:00 am, so I have the morning to gradually prepare myself internally – this can involve stabilising my emotions, doing practical jobs that help me order my thoughts, and/or reflection on what I want to focus on in the session based on my state & current need. I try to avoid appointments that involve driving in peak hour traffic.
The degree to which I can feel internally prepared will vary depending on the day, but I also actively approach every meeting with an openness to whatever experience presents itself, knowing that there are always variables once I’m there, and that I can’t predict what I might gain in the process.
I write all my appointments on a wall calendar that I can easily check in our main living space. I also ask reception to email me all details of appointments so I have a record and easy access on my phone. I find reminder calls / texts from the practice are also very helpful, as my focus is so often on the present moment that I tend to forget things.
Are there things you do during an appointment that help to make it beneficial?
When I’m in my appointment, my focus is on making sure I express whatever it is I need to get out of my system. Over decades I have developed the confidence to speak candidly to any therapist, and to be blunt if I need to make sure I feel heard. When I’m especially emotional I allow myself to keep my vision on the floor as I speak, instead of forcing eye contact. I allow any emotion to flow through me in the moment, any anger, tears, despair or helplessness. I allow myself to be vulnerable, knowing it is a sign of my strength. I speak with as much honesty and authenticity as possible, and stay true to whatever I am experiencing at the time, even if I’m feeling judged. I allow myself to talk about aspects of my experience that may be considered taboo. I allow myself to disagree with the practitioner if I need to.
I think an important function, and obligation, of professional therapy or counselling is to provide a safe space in which people can drop the strain of relentless social performance and let themselves fall apart, in order to release and transform, or even just sit with, their experience.
Are there things you do after an appointment that help to make it beneficial?
It depends entirely on how I feel after the appointment. If I’m feeling fine I might use my trip into town to get some jobs done. If I’m in distress, the first thing I need to do is get straight home. Then I’m likely to make a coffee, maybe eat, and find something relaxing or soothing to focus on (anything from lying down, meditating, doing something creative, reading or sitting outside in nature).
Where possible, I like to debrief with my partner – it helps me process some of the details of the session and even realise or express insights I didn’t get to during the session.
Many thanks to Autism Tasmania for permission to reproduce their survey questions here.