To address this gap, an international research collaboration was set out between Naked Heart Foundation, The University of Edinburgh and The University of Cape Town to develop a new family support programme for families of young autistic children. The new programme is called Bloom Autism Support Programme For Families.

The idea of a global parent education and training programme (Global PET) started many years ago when Prof Petrus de Vries, University of Cape Town, met with Naked Heart Foundation’s experts Dr Slava Dovbnya and Dr Tanya Morozova through colleagues at Autism Speaks. The first meeting was held in 2019 but unfortunately the COVID-19 pandemic caused some structural delays to progress. Thanks to the funding by Naked Heart Foundation UK, the project commenced in February 2022.

The initial distribution strategy for the new Global PET was primarily focused on low-income countries, where access to support programmes and specialised resources is often limited or unavailable. However, as the programme development and international research in the field progressed, it became increasingly clear that low income does not necessarily equate to low resource availability, just as high income does not necessarily guarantee adequate access to resources. Even within high-income countries, there can be substantial differences between families’ access to appropriately trained professionals and evidence-based support services.

This has led us to reconsider the original distribution approach for the Global PET. What initially appeared to be primarily a question of economic resources has proved to be more broadly a question of resource availability and access to support at the family and community level. Importantly, this situation can vary considerably not only between countries but also between communities within the same country. For this reason, we are now adapting the Bloom Autism Support Programme to ensure that it can be effectively implemented across a wide range of settings, from low-income countries to low-resource communities within high-income countries.

Families rarely need one programme to do everything. They may use a parent programme, receive advice from a speech and language therapist, work with a school, or seek specialist help with communication, sleep, feeding or behaviour. Bloom is not intended to replace any of these. It gives families a clear starting point and helps them connect professional advice with what actually happens at home. For example, a parent may know that a visual schedule could help, but still be unsure when to use it or what problem it is meant to solve. Bloom helps the family look at the child, the situation and the possible reasons for difficulty before choosing a strategy. The same family may later need specialist AAC (alternative augmentative communication) assessment, feeding support or a more detailed behaviour plan. Bloom does not try to provide this specialist training in a short group programme.

This is also useful in high-income countries, where services may be available but are often spread across different professionals and systems. Families can receive a great deal of information without having a simple way to bring it together. Bloom offers a shared language for thinking about communication, regulation, behaviour, family wellbeing and the environment around the child.

Bloom therefore works alongside existing programmes rather than competing with them. It can help families understand which ideas are relevant to them, try practical changes in everyday routines and recognise when additional specialist support may be needed. Its role is to make evidence-informed ideas easier to understand, discuss and use across different family, cultural and service settings, regardless of funding landscape or level of specialist knowledge.

To date the research project has covered three stages of development:

• Year 1: Formative phase
• Year 2: Conceptualisation and Programme design phase
• Year 3: Developing Programme Workbooks and Programme pilot testing in three international research sites.

Now that the key three stages of the research are complete, the focus areas for the final stage of the project development include:

• Completing the analysis of the pre-pilot and pilot data
• Preparing two manuscripts by researchers from the University of Cape Town and the University of Edinburgh on programme development and piloting methods, for submission to autism-focused scientific journals;
• Completing the final editing of the Bloom workbooks in English and its localisation for a pilot-area languages;
• Preparing templates for additional language translations, together with guidance for future translations;
• Developing sustainable training model system to increase capacity to support autism specialists across the globe.

Bloom’s distinctive feature is that cultural and language adaptation has been part of the design from the beginning, thus in the future, this programme could be used in more countries and service settings, with materials for families, clear guidance for facilitators and a training system that helps protect quality while allowing thoughtful local adaptation.

As with other Naked Heart Foundation projects, access to the Bloom support programme will be free for all. We believe that accessibility to effective support services for families with young children diagnosed with autism is an essential component of a family-centred social welfare approach. When families receive the right support at the right time, both caregivers and children have greater opportunities to grow and bloom.

To continue this vital work, we need your support. Please donate today to help us make a difference to the lives of families raising children with autism.