Autism with complex needs

Autism is a lifelong developmental disability. It affects the way a person communicates and interacts with the world. (NAS 2024)

Autism can be viewed as a spectrum disorder and is often referred to as ASD (Autistic Spectrum Disorder). At one end, the milder form is characterised by an individual finding it difficult to engage with people or cope with everyday interactions. They may have repetitive and limited patterns of behaviour and be stuck in a strict routine and be resistant to change.

At the other end of the spectrum, an autistic individual with complex needs may be disruptive, aggressive and unpredictable, both to themselves and to others, due to their extreme anxiety. These autistic children with complex needs may never speak and can seem to be locked away in their own world. They are in a state of constant stress and their families are often driven to desperation.

Autism can be characterised through three areas of difficulty often called the Triad of Impairments.

Social interaction : difficulty with relationships eg being aloof and indifferent to others.
Social communication : difficulty with verbal and non-verbal communication eg having little or no speech and is unable to interpret common gestures and facial expressions.
Social imagination : difficulty with creative play and imagination and often locked in repetitive and rigid routines.

The cost of autism with complex needs

…is not simply a physical and emotional one. There are significant economic costs as well.

Without early intervention, the chances of children ending up in residential care increases. This is a huge financial burden on the UK tax payer.

Research from the Foundation of People with Learning Difficulties demonstrates the breadth of public services used by people with ASDs, the high proportion of the overall cost that falls to families, the lost production to the UK economy and the potential benefits that might accrue from investment in appropriate interventions and supports to people with ASDs and their families.

It is estimated that the aggregate cost of supporting people with ASDs in the UK is £27.5b annually.

The lifetime cost for someone with ASD is calculated at £4.7m

Currently, only a paltry 7% is spent on education. An increase in this area will lead to major savings in later life as the chance of a child with autism being put into lifetime residential care diminishes.
Source : The economic consequences of autism in the UK : Foundation of People with Learning Difficulties
Making Schools Make Sense :NAS

The future of the autistic child with complex needs

The outlook for autistic children and young people with complex needs who do not receive appropriate education is bleak and of grave concern to parents who worry what will happen when they can no longer care for them.

90% of autistic people with complex needs do not do well in life and 60% are dependent on others during adulthood. Fewer than 10% have the basic skills which would allow any sort of independent life eg shopping or preparing meals. The lack of education available to teach these essential self help skills means generations of young autistic people and autistic adults with complex needs are excluded from making a meaningful contribution to society.
Source : NAS