The painting is by George Frederic Watts, and is called Hope. It shows a lone blindfolded figure sitting down and holding a lyre harp, their head close to its remaining string.
For me, it says something about the desperation for communication, joy and freedom which is felt by some autistic people trapped in some care home settings that don't understand autism.
It's a regular thing that a care home worker or behavioural enthusiast will pop up to say to people like me, "You don't know anything about Real Autism. We do. We work with Real Autistic People in care homes and they can't communicate at all. They spend their day screaming and self-injuring. That's Real Autism."
Oh goodness, no, it's not Real Autism.
That's distress behaviour. Not autism.
We need to be clear about our duty as human beings to do our best for one another. To enable safety, trust, affirmation, and most of all, communication.
I spend a fair bit of time in care home settings, co-assessing care alongside other professionals. I've worked alongside and with hundred upon hundred of autistic people of all kinds. Those able to use spoken words, and those not able to, and all those in between who, like me, are sometimes able to. Those who have been given additional diagnoses of learning difficulties. People of all kinds. Much appreciated. For me, an absolute joy to spend time with, and to listen to. I'm autistic. I have an autistic son. I'm post-grad qualified on the topic. I train NHS teams, amongst others.
Communication isn't always about words, especially when you spend the first ten years of life not having a clue what spoken words meant. That was me.
In our family, we communicate mostly in autistic language, not non-autistic language. It's a different system. The work recently by Crompton et.al. showed how effectively autistic people can communicate and collaborate with one another, and how easy it was for miscommunication when partnered with non-autistic people. We really do have our own language and culture, when enabled.
So, what of the alleged 'real' autistic person, screaming in distress and self-harming?
We need to be able to decode this, and resolve it, because this is distress behaviour, not autism. And it is communication, loud and clear.
Suppose they are hitting their head?:
Could they have migraines?
Is it tooth pain?
Jaw pain?
Eye pain from undiagnosed glaucoma or similar?
Sinus pain?
Supposing they have collapsed on the floor, or are using their body in 'wild distressed ways'?
Could they have undiagnosed hypermobility syndromes such as Ehlers Danlos, which is a common (but little thought-about) co-occurring thing? That can cause pain, balance difficulties, difficulty standing. POTS is another possibility, where there's an error in how the body gets enough of the right blood round itself when someone stands.
What of Restless Leg Syndrome, (which can affect any limb) and can lead to a desperation to move or kick out to get rid of the pain and discomfort in the limb?
Could they have injuries of any other kind?
Are they ill
Do they have CFS or similar?
If they seem frustrated, could they be bored to tears, having been given the wrong IQ rating because teams were using the wrong IQ test for autistic people for decades. Many have a normal or higher IQ, but are given simplistic tasks, teams believing they can do no better.
If they are experiencing meltdowns regularly, have they had a checkup from a brain team? The recent research showing many meltdowns are linked to epileptiform activity in the brain is interesting, and of course vital to understand. Not 'autism', but potentially a form of epilepsy? More research is happening.
What of communication? Have teams engaged a really good Speech and Language Therapist who specialises in autistic communication, to work with the person on ways they can communicate best? Whether movement, sign, technology, speech or otherwise?
What of the sensory environment? Starting with their own body and the clothes and shoes on it. Are they too tight, too loose, with seams or labels that scratch and dig in, causing immeasurable pain and discomfort?
What of the rooms they encounter? Are they lit with lighting that is so bright or flickery to their eyesight that they cannot see in the space, and are totally disorientated?
What of the soundscape? Get a decibel meter (easy to get apps for a smartphone, for this) and see what areas have sounds above about 25 decibels. That can be deafening. You'll find it is just about everywhere in most care homes. The quieter ones often have people thriving.
Sleep. Or rather the lack of it. Common for autistic people because of all sorts of factors, including uncomfortable scratchy nightwear, sheets that feel like sandpaper, beds that creak like a ship at sea when they move. Noises from the hallways and adjoining rooms. Endless flickering light in bathrooms nearby etc. Sleep disorders to do with melatonin or similar. Anyone who is regularly without sleep will be irritable.
Fear. So many autistic people are living with undiagnosed trauma conditions because of past maltreatment, especially those who communicate differently and cannot easily say what happened to them. Are they in fact terrified of someone they work with right now? We don't need to go far to read of the horror stories of a few care homes and the cultures people endured in there of mockery, scorn, violence and worse.
Coercion. Are they subjected to inhumane coercion methods from some fairly fanatical behaviourists? (ABA, or those ABA fans who claim it's PBS but it's actually pure ABA). I say plenty about professional concerns on this subject in other blogs of mine. I see people left in a terrible mental state by some behaviourists. Being clear that some are kind people who adapt techniques to be collaborative and joyful, and I don't mean them.
There are simply so many possible reasons for distress behaviour.
We do no favours to people in care home settings by claiming their distress is 'autism'. It leaves people at grave risk of poor outcomes from undiagnosed health situations, for a start.
We need to be proactive. We need to get in autistic specialists, who work alongside other professionals such as Occupational Therapists and Speech & Language Therapists, and help decode what's happening. Translators, allies, able to see and sense the sensory difficulties that teams would otherwise be guessing at.
We need to stop the idea that distress is 'real autism'. We need to stop the idea that autistic people don't and can't communicate. Above, just ideas. Not a full list. But I hope it's given you a starting point.
Every autistic person is a person of worth, a person who deserves to be listened to, and respected for who they are.
Working together, we can bring about good outcomes.
Glad indeed of the work I do with teams across the country who want to effect positive change that is fit for autistic people, and fit for the 21st Century.
Thank you for reading.
