Jake’s Story – flexibility, negotiation and adaptation
Jake was diagnosed autistic with complex needs including high anxiety when he was 6 years old. Jake’s profile had a huge impact on many aspects of home life and there were many barriers to accessing any education provision for him.
Jake attended a specialist provision, but this broke down in 2018 as the school used traditional approaches suitable for other autism profiles, rather than the PDA approaches and adaptions Jake needed.
Jake was then offered a bespoke programme supported by a team of outreach workers and therapists who worked with him at home. Jake’s level of engagement with the team fluctuated and there were occasions when he would reject a particular visitor.
One of the biggest changes over time relates to the approaches suggested for supporting Jake. The initial diagnosis focused on the importance of structure, consistency, the use of visual schedules and support, reward systems and encouraging him to understand the consequences of his actions. These approaches did not seem to have any lasting positive impact on his engagement and learning and actually began to escalate his anxiety, resistance and distressed behaviours.
Two key workers from this team began to build his trust by offering a collaborative approach. Through his interests, those working with him imaginatively incorporated many aspects of literacy and numeracy into connected activities and used them to promote discussion around social and emotional understanding and ‘appropriate’ responses and behaviour.
In 2021 Phil Christie, a consultant child psychologist who specialised in children with complex presentations, was commissioned to work alongside the Specialist Teaching Team to support Jake and his family to consider the possibility of getting him back into a school environment.
During this period progress was not always linear and there were setbacks and periods when Jake was very anxious and less able to engage. These spells were most frequently linked to external factors, such as the impact of the pandemic - both in terms of its impact on Jake’s anxiety and the pattern of home visits. Jake became more volatile, very withdrawn and reluctant to engage. For several weeks he refused to wear clothes and rarely left his bedroom. Visits by the team continued but he was mostly unable to engage and mainly did so through the doorway to his bedroom.
A responsive phase
There was some improvement in December 2021 coinciding with Phil Christie’s visit to see him as part of his assessment and talk to him about his potential school placement. At the start of the following year reports both from home and the team were more positive with Jake engaging with the team during visits, participating in activities outside the house, such as swimming, and talking positively about future arrangements, including the prospect of school.
Phil noted Jake seemed to be in a responsive phase, showing more flexibility, being able to talk about and explain his emotional state and ‘recovering’ from things he found difficult more easily. Jake was also showing greater understanding of other people’s perspective and making significant strides academically, even though this is almost entirely self-taught.
Phil Christie contacted the principal at NAS Robert Ogden School to enquire about the Inclusive Learning Hub, a learning environment for students with an autistic PDA profile. After discussions between Jilly Davis, former Assistant Head of Robert Ogden and Education Lead for the PDA Society and Katie Lake, Assistant Head and Teacher lead in the Learning Hub it felt appropriate to establish if Robert Ogden School could meet his needs.
In July 2021 Katie and Jilly visited Jake at home where they observed a key worker working with Jake via a camera. Jake requested to speak to Katie about what Robert Ogden school was like.
From that initial meeting Jake agreed to regular home visits from Katie. The only aim of these transitional visits was to build connection and trust with Jake, following his lead in whatever direction that took. There was no time scale for transition visits to the school until Jake requested it. To allow for funding and preparation to be put in place a suggested date was made for Easter 2022 but Jake was not aware of this and it was made clear to the local authority that transitions would go at Jake’s pace. Gradually Jake was beginning to show curiosity about visiting the school and was coming around to the understanding that “not all schools are the same”. One of the biggest motivators for him to attend Robert Ogden was that he wanted to make friends.
Careful transitioning
After 4 months of visits from Katie and Claire Middleton (Senior Teaching Assistant) it was agreed that teaching assistants with the right personality, skills and interests to support Jake were sensitively introduced. Jake’s motivation to meet these members of staff and attend the school still seemed to be centred on making friends.
It felt appropriate to begin the transition with Michelle (Mum) visiting the school and seeing what the Learning Hubs had to offer and if she felt it would work for Jake. Michelle was reassured by her visit and a meeting was held with all key professionals from Education and Health and Social Care to discuss why Robert could meet Jake’s needs. Concerns were expressed due to the travel time and whether or not Jake would be able to manage up to 5 hours in the car to come to school each day.
Robert Ogden, through their inclusive curriculum, could meet Jake’s needs by offering:-
- A child led learning pathway, encompassing a self-directed curriculum, embedding his strengths and interest, giving him a degree of flexibility in what and how he learns with clear and negotiable boundaries regarding school expectations.
- A flexible, collaborative and indirect teaching style which accommodates his capacity to learn at any given time. To involve Jake not just in the content of what he is being taught but in the skills that are relevant, meaningful and realistic for his individual circumstances and that will support him in a smooth transition between phases and setting.
- To Support Jake in his personal and social development so that he can access learning opportunities to maximise his potential enabling him to see himself as a successful learner.
- That all staff were aware of Jake’s anxiety levels increasing and feel confident to proactively follow his support plan which may include adapting his learning activity, social and or physical environment to avoid an escalation of emotions.
- Transition visits to the family home became part of Jake’s routine and school staff would visit each week and relationships began to develop. In between visits school staff and pupils would write Jake letters informing him of all the great things that had happened in school that week. Photos of the school were shared with Jake and Michelle along with short fact files and a video of the transition from the car park up to his individual room within the Inclusive learning Hub.
- At home Michelle created a Robert Ogden notice board in the kitchen so Jake could look at it on his terms.
The transition visits continued and from the weekly newsletters Jake began to ask questions of the other pupils within the Hub and it became apparent that this was really important for him. An invite was sent to Jake to join in with the Friday football club along with a school football kit as he had expressed an interest in this.
When Jake was ready a first visit was arranged to Robert Ogden for him. Working collaboratively with mum the school made a detailed plan for this important first visit. The plan included:-
- Which staff would be waiting for him and to immediately let him through the doors and straight through reception.
- Which toilet he would use on arrival. (photos of the toilet had been sent home prior)
- School to have the correct Chicken Dippers for Michelle to support staff in cooking for him during his visit.
- Where Michelle would be based during the visit, so Jake knew where he could meet her at any point during the visit.
- Jake’s room to be set up with the correct chair, computer logged on, bean bags in room. (All pictures sent home prior to the visit).
- Other pupils identified as to who Jake may want to say hello to and the best times for this to happen.
- Jake was given options prior to his visit of what he would like to do and see when in school. The options were clear and flexible for him.
- The journey to school was a long one for Jake so Jake and his sister created a playlist to be played in the car of his favourite songs that would be long enough to cover the journey. This helped as music was a specialist interest of his.
Adapting to suit need
As a result of the transition plan being tailored to Jake’s needs, focusing on flexibility and collaborative approaches Jake is now 8 months into his transition back into a specialist provision. Success is being achieved by offering a holistic, bespoke learning pathway which was ‘Jake Led’, where he felt safe and listened to. This has resulted in progress in many areas:
- Jake now attends school 2 days per week, with a third being planned, and has daily TEAMS calls with staff on the days he isn’t in school.
- Jake is continuing to form strong trusting relationships with staff and is now less reliant on Michelle informing them of any issues he has when in school. He only requires Michelle’s support with personal care.
- Jake continues to be very positive about school saying he enjoys attending and wants to be here. He will speak to key people in his life how well it is going and how Robert Ogden isn’t like the school’s he has tried before.
- Jake has started to develop friendships with students at Robert Ogden. Something which he has previously struggled to do so he was socially isolated and unable to interact with peers. Jake is developing his social skills and has shown great progress over the time since he has been on roll.
- Progress was also seen around his emotional wellbeing and skills for independence. Jake presented as less anxious, was able to accept small changes and more adult direction within his day. Jake began more open to discussing issues with staff and his Mum, and rather than shutting down was able to work through issues productively.
Progress however is not always linear. The school were aware that October-December present a challenging time of year for Jake causing periods of shut down, so he would find attending school regularly during this period difficult.
This time of year is particularly challenging for Jake due to a number of factors including special occasions such as birthdays, Halloween and Christmas exacerbated by the unpredictability and noise of fireworks. The darker shorter, colder and dull weather during this time period is also big contributing factor to the shut down Jake experiences. Sometimes even the slightest cloudy day impacts him by making him unable to do things he had planned to do with his family even if he wanted to. With all these factors adding to Jake’s anxiety it can be tricky for Michelle to find ways to support Jake and even innocent actions can get a distressing reaction. Michelle says “It’s like the PDA totally comes into its own in the darker days.”
There was no expectations to encourage Jake back into school at this time but school continued to facilitate home visits during this period which Jake engaged well in. He has openly told staff that he will be returning to school in January. Jake has periods of time where he can display a lack of permanence and engagement and transfer of learning and experience, which means that there can be very sudden set- backs for him after relatively prolonged periods of settled behaviour and progress. This is when its most important to remember that progress is not linear and to look at the progress overall.
For Jake the progress can be seen in the short-term goal to help him enjoy learning again and make up for lost opportunities has been achieved. Rebuilding his trust in education in order to maximise his full educational and social potential is also being achieved. PDA friendly teaching approaches have enabled Jake to engage with education and he has now begun partaking in formal lessons of his choosing.
The success of this re-engagement into a school environment comes from a flexible and collaborative approach between the family, school and all outside agencies. Understanding the impact of PDA on Jake, listening to him and his family and tailoring the support offered has been key.
Download Jake's Story - flexibility, negotiation and adaptation
Accompanying case studies:
Oliver's Story - a mainstream student experience