Placements are often justified on the grounds that behaviour which challenges needs to be addressed before community living is possible. But for many autistics this is backwards! Behaviour is communicative. Common causes of behaviour which challenges, in autism, are frustration and distress, due to difficulties with:
• communication
• uncertainty and unpredictability
• sensory issues
Most staff working in care have had little or no good quality autism training. “Behaviour management” typically focusses on reactive management and restraint techniques! It is little wonder that autistics stuck in these situations display distress in such an adverse environment. In institutions individuals are typically subjected to:
• change with little or no warning
• little control over their environment
• a highly unsuitable sensory environment
• constant interaction and demands
• very limited access to people with whom they can communicate effectively (e.g. family) or appropriate support for communication (e.g. AAC technology)
It is hardly surprising if this results in behaviour which challenges.
Effective training of community-based staff to enable them to actually understand and anticipate an autistic perspective is essential. We need to move away from ineffective and damaging “reward and sanction” reactive approaches to behaviour management. Creating workable community support is possible. It isn’t always cheaper immediately, but it is in the long run and this should be very motivating to local authorities and trusts. A good starting point is to look for providers who take an autistic perspective seriously and make use of the autistic community as a source of knowledge about how seeing the world from an autistic point of view can help enormously. Most behaviour which challenges can be prevented and avoided – but institutions are completely the wrong place to do it.
Community provision can work but only if it is staffed by sufficiently well trained and supported staff who have a clear and deep understanding of autism on a practical level. “Awareness” courses are not enough. Learning about the triad of impairments is not much use when faced with a distressed autistic who can’t use speech to tell you what’s wrong. The latest “products” on sale from the autism industry are also of very dubious value – check out first whether they are really as evidence based as they sound – there is a lot of “neuro”-rubbish being talked out there. Exercises to retrain developmentally immature reflexes are little help when faced with an autistic adult head-banging to the point of bleeding. Creating an autistic friendly environment, addressing communication, autonomy and sensory needs can be a good start to proactive behaviour management. But community staff need to have confidence in their skills and knowledge to be able to do that. It isn’t going to happen more widely until the entire social care sector begins to learn enough about autism to really understand that autism is a fundamentally different way of being and approach the needs of autistics with fewer assumptions and an openness to those different ways of thinking and being.
I’m aware of a few providers doing some fine work in this area, but we need more. We also need more willingness from local authorities to think outside of the box and consider bespoke packages with sufficient funding and support for training to ensure good quality PAs equipped with real world autism skills.