“We’ve had positive experiences of PBS for our son with severe learning disabilities and challenging behaviour. Essentially it provides guidance for carers who, though lovely and wanting the best for him, are not necessarily knowledgeable about behaviour management. Our son’s care provider has its own PBS team and when the support is done right, we think it helps e.g. provides a structure through the use of visual prompts, guides staff as to how to respond to and classify incidents and provides ongoing support to staff. I do, however, feel the campaign – and by extension LDE – needs to make a distinction between PBS and ABA. I have no personal experience of ABA but I do have professional experience of it and would definitely not advocate ABA.” 

“PBS has transformed our lives for the better. My daughter’s quality of life is much better now we live a PBS life. I know PBS is kind, it doesn’t tolerate punishment or any aversive practices and works to eliminate restrictive practice. All this is really good.
My biggest worry is people who say they do PBS and don’t- schools sometimes say this and it is very dangerous. PBS is the way I would want to be treated, it works for our family and our daughter who has a severe learning disability and is autistic.”

“My son is autistic and has a learning disability. I don’t know what PBS really is. I don’t fully understand it. I do not think it is properly regulated and people can say they understand it when they don’t.”

“As a foster carer, then special guardian and now legal deputy for a person with a learning disability and autism, PBS has been a life changer. PBS has prevented our family member from having psychotropic medication, from being institutionalised at a young age. PBS has been the only thing that has helped. PBS has enabled our family member to stay in his family and community.”

“PBS is a flexible framework – when used well, the experience for people with learning disabilities and/or autism can be fantastic …. the problem is that it is not always done well. In addition to really strong training pathway, there needs to be registration of PBS practitioners (separate from UK-SBA). When you get a good PBS worker who sees each person as an individual; gets the ethics that are inherent in the model; doesn’t do “normal” and embraces difference; understands trauma and attachment-based approaches and how these fit within PBS framework; is co-operative and not coercive; and sees the strengths AND weaknesses of ABA (in other words is a Proper PBS worker), then the outcomes can be amazing.”

“People just judge me but don’t know me.”

“I’ve worked in children’s services for 20 years in also a children’s therapist I’m hugely focussed on ethical practice – this amazing team teach my son to communicate in a safe way and I have no concerns whatsoever about their practice.

It’s an uncomfortable truth that those of us who have benefited from ABA have our voices shouted down and our experiences ignored. There are people who are autistic who get shouted down and abused for supporting this. I’m also neurodivergent myself.”

(Neurodivergent Parent Carer)

We have heard from lots of different people who have been involved with PBS as part of their work. Most of them have had positive experiences with PBS too. Some people have said that they do think ‘poor PBS’ exists but that it is not truly PBS.

“I’ve still seen some PBS plans that look amazing, and others that look like a rules list for how others want the person to be as there is still a lot of normalising.” 

(a CETR panel member)

“I’m a PBS coach for {organisation} and we have a team of PBS leads working in our services.  We have worked with a lot of the people we support (with learning disabilities and/or autism), their families and other relevant supporters to enable them to live calmer, happier and more content lives through use of PBS with an approach personalised to each individual.  This does not mean we have pushed them into society’s shape, more looked at what their behaviour is trying to communicate and meeting those needs in a way that is safer for them and others.  Examples include enabling someone to complete their important rituals of touching heavy equipment by using a vending machine to buy an item, rather than lifting a fire extinguisher up, reading a person’s need for space so that they can self-calm to such an extent that they were able to go to McDonalds and enjoy lunch there (this hadn’t been possible previously due to risk of harm to himself and others).  Through a detailed PBS plan for someone, enabling a person to stay calmer as staff supported him in the best way for him so he can enjoy a wider range of activities and staff supporting him.”

” I am now a PBS lead and we focus on quality of life, human rights, health and wellbeing, making sure we help people to make their own choices and decisions. We look at how to aid communication, how would the person prefer to communicate, what do they want to do with their lives, we focus on reducing restrictive practice, empathy, understanding people’s trauma. I read through the information from the Neurodiverse collection and I do not recognise the PBS they describe – withholding things from people, ignoring, punishing – that is not what PBS is about – I agree that these things should be banned but they are down to poor PBS and not the PBS I am passionate about.”

(PBS team leads)

“I find that it works for some customers but not others. Also it can work well one day but then not the next. But some of the tips in there plans are helpful for managing behaviours.”

(a Support Worker)

“My experience is this:

• Understanding and use of PBS is varied in quality and banded about often without understanding of what it is. This can mean people receive ‘bad’ (i would argue not) PBS and this gives it a bad reputation.
• The wording of PBS should change to reflect that it is about supporting human rights and quality of life not fixing behaviour. I often use ‘striving to live my best life’ support.
• Systemic and relational thinking is fundamental and some older training does not consider this.”

(a PBS Practioner and Learning Disability Nurse)

“I am concerned by it’s behaviourist foundation e.g. assuming all behaviour is due to reinforcement or one of the supposed 4 functions of a behaviour (SEAT) – this does not match the autistic experience well, and frankly, is based on an arguable outdated science that the rest of the world seems to have either moved away from, or merged with other frameworks. Behaviourism is a mono theory, and I think LD services have been attached to it for far too long despite the mixed and controversial evidence base, and largely documented prevalence of implantation infidelity – PBS surely needs to evolve away from behaviourism, and the arguably ‘cult’ of ABA.”

(a Behaviour Support Practioner)

“I find the label of Positive Behaviour Support (PBS) to be a barrier to people leading meaningful and fulfilling lives. Each person is unique, and behaviour is a form of communication — it reflects how someone is feeling in that moment. When people are unable to express themselves through words, their emotions may be communicated in other ways. Rather than enforcing a notion of ‘positive’ behaviour, we should focus on understanding and supporting communication in all its forms. Our role should be to listen, observe, and respond with empathy, not to control or correct.”

“It has given us a way of working that aligns with our own values of supporting others to live the life that they want to live. Before really understanding PBS, the organisation I worked for, my managers and my colleagues did not really know how to support someone displaying severe challenging behaviour.

Positive Behaviour Support has been the answer. It has been the key to meaningful support and care for others.”