It is almost impossible to get away from the media circus around the Government’s SEND Reform proposals and consultation but at the centre of this are families and their children who have been consistently let down by the system. From lived experience, supporting families for the last four years as an advocate and establishing a non-school alternative provision for neurodivergent learners, the need for change is very much welcomed but are the Secretary of State for Education and Schools Minister really listening?

I am keen to explore how the expectation of all children ‘Achieving and Thriving’ in mainstream schools will be accomplished, particularly for those with a Pathological Demand Avoidance profile of Autism. Have the current proposals laid out to support mainstream inclusion been thought through meticulously enough; to ensure a learning environment has the components at its core to soothe a highly anxious nervous system?

PDA

Often seen as controversial due to its presentation and not currently featuring in the diagnostic manuals, many parents/carers come up against strong barriers to support for their young people because they are told by professionals that PDA is not recognised. I stand firm in my beliefs that we must focus on the specific needs of each individual child who stands before us. They must be the starting point for every discussion, each plan of support and the environment in which nurtures a feeling of trust and progress across all areas of development. 

PDAers who have complex needs with extreme levels of anxiety will avoid demands (including expectations they put upon themselves and activities they indeed enjoy doing) to keep themselves safe. The feeling of safety within a learning environment might come from trusting relationships, autonomy, predictability, understanding and genuine interactions but young people express that these non-negotiables are often missing from their support mechanisms and in turn can lead to the inability to attend. 

Why inclusion?

The aim of giving all children the opportunity to attend their local mainstream school sounds great on the surface. I have been committed to driving my own daughter to her school which is one hour away for the last 4 years but we would both agree that being closer to home would have its benefits. The White Paper also proposes that with this inclusive model, young people will have a greater sense of belonging and community; living and learning alongside peers and more equitable access to enrichment and wider school life. Very few families would argue that these proposals wouldn’t be high up on their list of priorities for their children but we need to delve so much deeper into how mainstream schools can work inclusively and meet the needs of a cohort of young people who require a very different approach in order to thrive.

What would need to change?

As do other parents/carers, campaigners and school leaders, I have many questions about the very specific detail of the Government’s plans which appear to be lacking. Questions answered via social media short videos that do not in fact answer the question at all, are extremely frustrating and tension is building around the thought that our children’s legal rights and individualised, needs led provision is going to be stripped away. 

Whilst many PDAers already face many barriers to attendance and are not receiving an education that meets their needs, being forced into a generic provision package of support seems a backwards step and not one that will improve holistic outcomes. 

As previously stated, trust is a key component and the breakdown of it can seem minor but has immense implications for the young person. An agreed exemption or scaffold refused by a member of staff unaware of the agreement, may lead to dysregulation and a flight risk. To ensure successful mainstream inclusion, must schools be a lot smaller and much more personalised?

If a young person’s inability to comply with strict uniform policies is due to high sensory sensitivities, must schools remove uniform expectations for all students? Being sensory aware can also relate to crowded spaces, noise, smells and lighting. If students have access to an inclusion base, alongside an expectation to attend mainstream lessons, must the whole environment be a space that features natural and soft lighting, mellow acoustics and comfortable seating arrangements?

Why NSAP works

For many young people, mainstream schools will always remain the right place for them to progress academically, socially and emotionally but even with the promise of extensive staff training, ‘Experts at Hand’ and earlier intervention; if barriers touched upon above are not addressed, I fear that many neurodivergent children will still be at a disadvantage. The need for non-school alternative provision will remain pivotal if ‘inclusion in mainstream’ is half hearted and in fact proves to exacerbate segregation. 

High quality AP has an incredibly pertinent role in bridging the gap between non attendance and re-engaging with learning; providing an opportunity for PDAers to build trust in a system and people again. At BUD we create an environment that most mainstream schools are currently unable to provide and our case studies evidence the transformational progress our students are making. 

When PDAers are misunderstood or have reached burnout, they need a reset. It’s impossible to expect them to slot immediately back into learning in a setting which has likely caused them trauma and extremely low self esteem. Feeling safe, welcomed and valued is a prerequisite for new learning to take place and this cohort of young people do have big aspirations! We are not the destination but a footing for positive change for them and their families. 

With lived experience, acknowledgement and understanding of how PDA children present and the individualised provision they need; alongside a national commitment to overhauling the education system, school leaders could meet a widening range of complex needs. In the meantime, specialist non-school alternative provisions which are robustly quality assured and regularly monitored by commissioning schools and Local Authorities can support interim placements and outreach to ensure that all young people receive an education that meets their needs in a timely manner.