Erma and Leon Moncho

Erma Moncho lives in East London. When her son Leonardo was three he was diagnosed with autism spectrum disorder ASD). To Erma, this wasn’t a huge surprise. It was more like relief: to finally have the diagnosis meant she could stop wondering. In a way, the diagnosis gave her and her family the ability to make plans and get accustomed to life with Leon and his diagnosis.

It wasn’t that the family weren’t already used to Leon’s autism. They had developed ways of communicating with him and they had developed strategies that made life easier.

Erma is a good planner and had been online and done her research. She had tried using picture cards to help Leon communicate. He was at a nursery where his needs were being supported and she also had help from her local Borough, which gave her access to different courses, such as music therapy.

But as time went on, Erma felt she needed a practical framework to help her and her son. She wanted a proven structure to follow, and to feel a sense of progress.

That was when she began researching again. This time for autism therapies.

Erma: “I began to look into each therapy in a lot of detail. I wanted to see how it was used at home; I wanted to see it being applied in real-life situations. Parent videos were a powerful way to show different approaches – and to see the reaction of the children involved.”

Erma came across Applied Behaviour Analysis (ABA) in YouTube videos. These were mostly American and showed children at home whose parents spoke about their improved communication and social skills and the reduction in more negative behaviours. Sometimes these behaviours involved aggression towards others, sometimes self-harm and sometimes behaviour that was highly anti-social or dangerous.

“After watching YouTube clips and reading about ABA online, I began to consult with professionals who worked with me and my son in the Borough. Some had heard of ABA and knew about it to an extent, but most were less knowledgeable than I’d hoped. It was clear from my research that ABA is better known and used in the US. What I found while talking to people here and looking online reflected that: there wasn’t a lot of UK-generated information out there.”

Erma thought about hiring a consultant to devise a plan for Leon and a tutor to help action it.

“The cost was a worrying factor. And I suppose I felt that I wanted to be directly involved with Leon’s therapy – after all, I know him best. I know the types of behaviours I want to focus on: the pinching (mostly of my husband) and his habit of grabbing strangers when we are out, for example. So I considered training myself to tutor Leon directly.”

Then Erma came across ABA Pathfinder. This was the start of her learning more about ABA – and crucially learning more about Leon. ABA Pathfinder upskills a parent or carer to use proven ABA techniques with their child directly. Regular guidance and support comes from a qualified MSc and/or BCBA accredited ABA Consultant via Skype video calls and emails. As the parent or carer records their child’s behaviours via an app, this is instantly available to the consultant who can analyse the data to ensure the behavioural plan is progressing.

Erma: “ABA tries primarily to do two things: first, it tries to reduce negative behaviour – that which is getting in the way of learning, or which is socially unacceptable or dangerous. Second, it looks for ways to increase and encourage positive behaviour. This is done by understanding the reason someone is behaving in a certain way. As I’ve learned more about ABA, I have learned to look more closely at why Leon behaves in a certain way – and to try to address the root cause of it, and help him find a positive way to get what he needs.”

Erma’s Consultant at Beam ABA explains how she approaches a new family:

“I start by talking and listening to the parent or carer. My aim is to build a really detailed picture of a child’s life: their routines, their health, their family, and importantly their behaviours and skills. All these factors are taken into consideration when putting together the individualised ABA programme.”

“We concentrate on reducing behaviours which are harmful or detrimental to learning. We also focus on skill acquisition to help remove the relevance of challenging behaviour by teaching the necessary adaptive skills to help meet needs more appropriately. We are simply trying to improve the quality of life for someone with ASD – and often for their family too. It all starts with talking to those who know the child best.”

Erma describes her experience as she began working with ABA Pathfinder: “From the beginning, it’s been positive. I told the consultant all about my son and our lives. I told her about his naturally happy character. I also told her about the pinching and the non-compliance, particularly his tendency to walk off when we’re out, or grab strangers. Along with developing his communication skills, this is where I wanted to focus. The whole process was incredibly reassuring. The consultant asked a lot of questions and allowed me time to explain my position and what I thought needed to happen. She asked what sort of progress I’d like to see and we agreed on specific goals we would aim for. She translated everything I had told her into a really clear plan. I felt relieved. I felt like we had the support we needed and that Leon would benefit hugely.”

Erma was given access to a library of online learning resources around the key principles of ABA. They provided her with the necessary level of understanding to implement behavioural strategies designed by an accredited ABA Consultant. She was particularly interested in how Consultants use the science of ABA to help a child. It didn’t take long. The e-learning is in short five-ten minute blocks and easy to digest.

Erma’s knowledge and confidence was growing quickly. It was at this point that she downloaded the behaviour app and began to record instances of the behaviours she and the consultant had agreed to address.

These were not just the challenging behaviours as described by Erma, as the Beam Consultant explains:

“We worked directly to address the challenging behaviours – like the pinching, for example. At the same time we also worked on building Leon’s communication skills and developing his ‘learning to learn skills’”.

Leon was just turning 4 when he started the programme and he already displayed some prerequisite skills which would aid his learning. At the start of the process, Leon could sit down and focus, but found it difficult to follow instruction. He would engage in activities but sometimes move from one activity to another without listening or understanding direction. Erma and her Consultant began to work to increase these ‘attending’ skills.

“Acquiring these are important for any child’s success. It is the foundation from which a child begins to acquire all other skills. We focused on developing these pivotal skills with Leon. These included attending, responding to instruction, learning from prompts and imitation skills.” (Beam Consultant)

Targets included Leon being able to respond to his name and some simple table top activities like toy play and imitation targets. Imitation focuses on a child’s ability to copy others, including imitating actions with objects, such as pushing a car or stacking blocks, or imitating gestures and body movements, such as clapping hands or waving.

Progress in these areas helped Leon engage in an activity or task for longer periods. His appropriate responses – attending, sustained engaged – were reinforced. After a few weeks he was doing both for longer periods – in fact, up to ten minutes at a time when engaged in functional tasks like toy play or imitation targets.

Erma: “Leon had a limited interest in playing with toys before we started ABA therapy. He found it difficult to occupy himself during down time. I raised this with the Consultant and between us, we introduced an “independent toy play” programme, which was essentially increasing the range of play activities that Leon could engage in. He had never shown much of an interest before and it was something that we never imagined he could be persuaded to do.”

Play skills are important as they can affect learning. A lot of children’s interaction and communication occurs through play. The ABA programme identified a variety of closed-ended play activities for Leon to engage in, such as learning how to play with building blocks and a shape sorter. These activities will be expanded upon as Leon masters his current targets.

Erma was also focused on helping her son communicate his needs.

Erma: “He would pull people by the hand to get what he wanted, but this didn’t always work. The Consultant and I decided we’d use the Picture Exchange Communication System (PECS). My husband and I worked together to teach Leon how to communicate using these pictures, which has been amazing – far more effective for us and Leon is now getting what he wants.”

Through their teaching, Leon has mastered Phase 1 of PECs. In PECS phase 2 he learned to become a more persistent communicator and to travel to exchange the picture of the item or activity he wants. He has recently started on PECS phase 3. This system uses picture cards for communication. It is has provided Leon with an effective way to indicate his basic needs and wants as he has to exchange the picture of the item or activity he wants. It is helping him build an important foundation for communication.

But it’s not just in these areas where improvements are being seen. Erma’s whole family are benefitting. Even her eight-year-old daughter has changed the way she addresses her brother and is beginning to understand more about how he interacts with the environment around him.

Beam Consultant: “Leon has made steady progress as a result of the time Erma and her husband have put into the programme. Their consistent and regular implementation of the programme guidelines and recommendations has led to the gains that Leon has achieved. Their hard work is what has made the difference and they continue to work hard to help him progress.”

Erma: “It’s changed the whole family. We can all see Leon’s progress, whether watching him using his new skills or through the behavioural data we have accumulated over time. I even uploaded videos so the Consultant could see how the programme was going. I felt really supported throughout the process by someone who cared about my son. This is great, but it isn’t the best thing about my experience with Beam and ABA.

“The best thing is seeing how Leon has grown closer to our family. In particular with my husband, who only now, after following the programme with me, has the close bond with Leon that perhaps eluded him previously. Leon no longer pinches my husband. This is incredible. He no longer pinches my husband! And Leon will now go to him; he never did that before. They now have a greater bond. He is responding to the therapy in a way I couldn’t have predicted.”