Updated: Mar 26, 2022
It will of course, depend on who is doing the training. My own experience of battling to get a referral from reluctant GPs, speaks volumes to me. And then the questions... Like trying out different lenses in an eye test, Blurred words and meandering questions that confused. Autistic sisters and brothers, I hear your words.
I see myself in you so clearly. I identify. I totally get you.
How is it then, that when I look at the way Autism is diagnosed, I feel so lost?
The disbelieving eyes of doctors, blind to my anxiety, locked inside. Oblivious of the hurt they were causing in their denial. Sense-blind to my silence, to the words that would not form. Their tests, so stuck in a neurotypical narrative, seemed out of place. So obsessed with our fitting in.
Acceptance is about the world adapting a little, to fit in with our needs.
Surely it is about time we are listened to, not talked down to.
When is the time that our vision is expressed?
And our truths spoken?
When will the right to our own culture be recognised?
Time to see a little through our eyes...
There are more and better things to talk about than functioning labels and deficits. Change the narrative. And let us make sure that it will be a positive one.
How do we get there? A start is through continual consultancy and inclusion of the Autistic community in shaping Services that actually offer support that we want and need. At the moment we have generations of GPs, nurses and other medical professionals who have had no proper Autistic-led training. When we try to access services therefore, it is a massive struggle and exercise for us to explain our medical and other relevant needs. We may experience sensations very differently to other people. A few key examples are pain, touch, hunger, temperature, taste and smell. If NHS staff are oblivious to this, then warning signs to serious injury and illness can easily be missed. A lot of us are so filled with anxiety, so used to a life-time of masking, that we often allow ourselves to be talked over and fobbed off, by professionals who do not believe us. We are a vulnerable group in Society who abhor discord and conflict. Thus some of us cannot speak up for ourselves when an authority figure such as a Doctor tells us something. This is born out in many examples. A person who is overwhelmed by the effort of communication, or by the surrounding sensory environment, cannot be expected to self-advocate and communicate their needs. Each Autistic person's experience is slightly different, and it is important that professionals are aware that there can be big differences. There is no one set of rules to fit everyone. For instance one Autistic person may be hyper-sensitive, meaning they cannot tolerate the slightest pain. Another Autistic person may have an opposite reaction. Some are hypo-sensitive, meaning they struggle to feel signals from the body such as pain. Questions that are asked to us in a certain way can overwhelm us if they are too general in their formulation. Professionals need to use precise and clear language. If questions are too vague or can be interpreted in a multitude of ways, then we will not be able to decide how to answer. Once we are overwhelmed, and our anxiety levels climb, we will often just say anything to get out of the painful situation. This is true of some real cases, where the patient was later found to have been bleeding out, but their overriding instinct was to leave. Sometimes how we are approached and how we are spoken to by staff can be incredibly triggering. An awareness of fight and flight response would be beneficial, as would a better knowledge and tolerance of Autistic coping behaviours. If an Autistic person needs to move their body in a certain way, or make certain sounds, to regulate their sensory needs, or to reduce anxiety, then they should shown the compassion and tolerance that they deserve. Staff must have a greater awareness of how they approach the patient. If they are too sudden, loud or their behaviour is perceived as threatening, then this can provoke people to react by their defensive fight or flight instincts. With every Medical appointment, we are faced with staff who are not aware that we spend our lives camouflaging our true thoughts and feelings. They do not seem to realise, that Autism is called an invisible disability for that very reason. How then are we supposed to explain it to neurotypical people who do not have the tools or training to empathise with our lived experience? The answer is staring us in the face. The Autistic Community must be involved in shaping a new generation of NHS professional. On this topic, it is us who have the knowledge and the expertise. We have all lived it every day of our lives. This could solve many Social problems at once. By having Autistic people behind training to support our needs, it would create useful roles for numerous of our neuro-kin. It would not only dramatically improve training and professional understanding of us in the NHS, but it would employ many individuals across the country, whose talents have gone to waste. What might the NHS services look like to us then? At the moment, we can only hope, dream and continue to campaign. I for one would like to step through the looking glass, into a distant future, and find out.