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Learning Disability Today calls for accommodation, care and mental health approaches to be designed to reflect the wishes of those with learning disabilities and / or autism.
Alexis Quinn, an autistic teacher, author and mother, describes in our exclusive video series what care looked like for her after self-referring to an Assessment and Treatment Unit. It wasn’t at all what she expected. She goes on to explain why occupational therapy and ‘autistic listening’ were what she actually needed, along with illustrating in detail many other ways better outcomes can be achieved, all at lower cost than the status quo.
Watch all the videos below and share your thoughts on Twitter. #Iwanttochangeitup
How would you describe autism and its influence on you?
My condition affects the way that I interact with the world.
What were you going through that led up to you entering the Assessment and Treatment Unit (ATU)?
Really what I needed was some psychology to deal with the death of my brother but not just any psychology, psychology designed for autistic people, designed for people that think differently, somebody that understands that.
What type of support did you want?
The person's not going to say "oh, I'm feeling very anxious today", they're going to display that through behaviour and that behaviour could be challenging.
What did the support look like when you received it?
Descriptions of restrictive interventions (restraint, seclusion, and segregation).
Those doors shut. Suddenly I was completely routineless. It was completely unstructured. I had nothing familiar, nothing that I could relate to.
Why did they say they were going to restrain you, each time?
I was never debriefed about restraint; I was rarely debriefed about seclusion.
When you are experiencing a sensory overload, how can you be reassured?
Clear the area, reduce the noise, reduce the chaos in the environment, turn the lights down and allow the person to have some space. And you might find that if you do those things, I for one would have calmed down.
How could those working in care best support people to relearn the skills they have lost?
Occupational therapy - speech and language [therapy] as well - enable you to express what it is that you need.
Could occupational therapy have been useful?
My senses are heightened in certain ways and the way to sort of calm those things down for me is to go running… is to use deep pressure like a weighted blanket… like massage, you know, self-massage… you can do it yourself with like a tennis ball.
Can hospitals play a role in supporting people in crisis?
As soon as you put an autistic person in a hospital, they're going to enter this really, really negative cycle of overload, meltdown; the person looks sick. Overload, meltdown; the person looks really sick. Overload, meltdown; the person looks really, really ill and definitely they've got to be in hospital and you can't break that cycle.
What would a good home life and support have looked like for you at the time?
If they're sensory-seeking, we need to look at ways to help the person modulate their sensory system. [But] if they are struggling with a lack of routine, we need to look at that.