This week there have been many frustrations about public perceptions of learning disability support. Our efforts to promote positive outcomes for people with learning disabilities are well understood by people who this is their day to day reality. Unfortunately for spectators and visitors, what we say and what they hear are often very different. Mark Neary recently blogged a social care dictionary as a satirical guide for parents of the jargonistic and often meaningless terms used in social care. Seems like the general public need one too. Here are a few examples:
“If you loved him harder his autism would go”.
Many parents are fed up with sentiments like this. Is it the backlash of “Positive” Behaviour Support? Do people just hear the word “positive” and think “that sounds a good idea, if we are just positive all the time our challenges will float away”? Nice idea, but really? Is it the “positive about disability” message being misunderstood? People with learning disabilities make fantastic achievements every day. Some people are truly inspirational in what they achieve, such as Sarah Gordy. What we don’t always see is the skilled support, the practice, the patience, the environmental supports needed to get there. Does Jo Bloggs see this and think “if they can do these things then all people with learning disabilities must be able to do that”? Kindness, love and warmth are needed to make these things happen. But without skill, practice, and patience it won’t go much further than being nice.
“She wants to drive a Ferrari”.
Believe it or not this was a Psychologists interpretation, a long time ago, of what a lady with autism I was supporting meant by stripping off her clothes in public. When we say “all behaviour has meaning” we don’t mean “…so why not have a guess, be creative!” We mean carefully observe what is happening, try putting yourself in their shoes, review what is happening before and after and start piecing the jigsaw together.
Similar, probably well intentioned kind words, may be heard by parents at reviews. Person Centred Planning looks at identifying the persons goals and wishes. This is to understand what is important to the person, what would be a good skill for them to develop, what can be done more independently, what do they need more support with, what can’t they cope with right now. Instead, when asked “what would Peter wish for” you may get a list of things that are the supports transposed wishes (he must want to listen to ABBA), or are the ridiculous and unreachable like winning the lottery or flying to the moon. This makes the whole process a farce, a wasted opportunity, and heartbreaking for parents to hear this guff from people who have been entrusted to support their child.
“Just treat him like everyone else”
Yes, this is an important message we need to keep repeating to stop the fear of difference or the “less than normal” ignorance. But this seems to be heard as “he doesn’t need specialist support, just treat him like everyone else”. For every other type of disability no one thinks twice about supporting the use of prosthetics to overcome their disability. Whether it is wheelchairs, glasses, guide dogs, or specialist therapists to provide evidence based intervention. There are models for structuring this support based upon what evidence says works to guide the use of these prosthetics by all involved. For some reason when the disability is a disability in learning access to prosthetics is frowned upon. Unfortunately some of this may also be due to unskilled use and misuse of these prosthetics. You can see examples of what some of these prosthetics may look like here.
Positive Behaviour Support is an application of ABA (LaVigna & Willis, 2012). Unless this is taken seriously in the UK, PBS will never be more than kind words surrounding a risk management plan. It needs the skilled clinical application of ABA within a PBS framework if it is going to ever achieve anything. It uses carefully designed reinforcement schedules to support and develop skills. This is not popping round for a cup of tea and handing you a reward chart. It will avoid the use of punishment. That doesn’t mean “it’s ok to do that because we call it a consequence, not punishment” – it means not trying to directly reduce behaviours. It doesn’t mean we just take everything he doesn’t like away. It means we carefully adjust the environment so he can be as independent as possible.
There is a growth in unskilled people professing to do PBS without the skills to properly do it, and this isn’t helping the sayers of kind words. Here is a quick test you can use if you are unsure about someone’s competence – ask what the difference is between a discriminative stimulus and a fast trigger! (I can see people heading for the Google answers already).
Lastly, there are some interpretations that ABA based interventions like PBS are trying to “take away people’s autism” or “force normality”. Videos like the awful one below, or people selling cures don’t help! Autism isn’t evil and we aren’t trying to cure people of their learning disabilities. We are trying to provide the prosthetics to support people’s disability in learning with specialist models of support, and competently trained practitioners to live WITH their disability. Would you deny an amputee his prosthetic leg?