A pile of unopened birthday presents lie in the corner of the room. A child sits with his back to them, listlessly rolling an old cotton reel.
A golden beach. A child stands there screaming refusing to put his feet on the sand as he cannot bear the feel of it against his skin.
A fourteen year old boy who is not yet toilet trained stands with his mum as she fastens his nappy.
A hot summer’s day, a family in the garden eating ice cream. A little boy sits inside whimpering, too scared to go into his own garden he has seen the wind in the trees slightly moving the leaves and is terrified of the noise.
A mother and son stand on a street corner. The boy is tall, about 9 years old and he is screaming as he is terrified to walk down the left hand side of the street. People are staring. His mother is crying.
An unopened Christmas stocking on a bed. A child lies in bed facing the wall.
A family driving along a motorway. Suddenly a little girl tries to climb through and wrench the steering wheel from her Dad. They are driving a slightly different way to Granny’s house she is petrified. Her brother and sister are screaming with fear.
A teenage boy is having his teeth brushed by an adult.
Your experiences of autism may be ‘Rainman’ or ‘The Curious Incident Of The Dog In The Night-Time’. Autistic children with complex needs are not lucky enough to be like the characters in these books. Sadly it is a very different story.
Autism is a lifelong developmental disability. It affects the way a person communicates and relates to people around them (NAS). In many cases autistic children develop normally up until around 24 months. Then their regression into their own little world begins. The milder end of the spectrum is characterised by repetitive and limited patterns of behaviour, the child often stuck in a strict routine and resistant to change. At the other end of the spectrum, an individual’s behaviour may be disruptive, aggressive and unpredictable, both to themselves and to others because of their extreme anxiety. These autistic children with complex needs may never speak and 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.
In every case of autism with complex needs, early intervention through an individualised, specialised education programme is critical to finding that child again and unlocking their potential. Education is the only commonly accepted intervention for complex autism.
But, it’s not so simple out there in the big wide world. In the vast majority of cases, a postcode lottery dictates the urgency and type of education or support a child gets. Some Local Authorities are at best, actively unhelpful, and, at worst, obstructive and underhand. Just getting the child assessed can take years. When early intervention is the key, the Local Authorities’ process and policy making can actually be harmful to the child.
If the child is lucky enough to get an education, a ‘one-size fits all’ approach is often the order of the day. Local Authorities are faced with overwhelming evidence from a variety of independent professionals, often presented at a Special Educational Needs tribunal and compiled at great cost to the parents. They still persist in supplying children with inappropriate education provision. Autistic children with complex needs are written off and babysat in institutions where cash and training are in short supply. They lack any basic self help skills which enable some semblance of independence and are excluded from making a meaningful contribution to society.
For the family of an autistic child who has complex needs/profound learning difficulties, the fight to get the right education puts immense strain on the family. Parents break up under the pressure and brothers and sisters struggle to cope with their lives.
The Fred Foundation has been set up to help fund education programmes for autistic children with complex needs. It is built on the principle of allowing these children to reach their potential through programmes that match their complex needs, not inflexible approaches which can cause immense suffering to them and their families
