These are the children that have a diagnosis of an autism spectrum condition, often following an assessment initiated by parents asking for help. They lurch from one day to the next, barely coping, just about surviving – but not living, not really. This is not a childhood you would wish on anyone. Their parent’s request for help led to a diagnosis (eventually) – but not to any help. These are the children in no-man’s land. Not coping with the (very ordinary) demands placed on them, but not sick enough to warrant support yet. If they do become very mentally ill, then whether they receive treatment or not seems to be based on pot luck.
But it is not the acutely or seriously ill (yet) children that are the topic of this blog. It is the children that are living in no-mans land.
- Children who are distressed every day because they spend hours in a school setting without support, understanding or a single adult that can rescue them if their anxiety spirals
- Children who, for various reasons, are “anxious because their autism and sensory needs are neither understood nor met in school”
- Children who are too scared to let their secret out – they have very little understanding about the social world; they spend all day stressed and confused and work constantly to hide it
- Children who cause themselves pain to prevent their anxiety from overwhelming them
- Children who cannot control their panic and turn tables over, run away and throw computers
- Children who try to express in their own way that their life is one not worth having
School want the problem fixed, but they think the child’s parents and CAMHS should do the fixing. They feel they have tried everything and that there will be no more support to help them to support the child. The GP feels helpless to assess the problem in 10 minutes, let alone to help (though speaking personally, 10 minutes of some one believing you is pure gold). The parents are frantically working to understand their child and to communicate what they have learnt about their child’s condition(s) to school, who become increasing frustrated by the situation.
CAMHS can’t fix this alone. They can’t.
CAMHS could offer a highly trained Clinical Psychologist with expertise in autism and all the interventions available to help the child manage their anxiety, but unless their school environment is better adapted to suit them, then it will not fix the problem. The child and his or her parents would appreciate the support. It would make a difference (just like the GP that listens or the teacher that tries their bests to help) but it won’t fix the problem.
CAMHS can help by conducting thorough skilled assessments.
CAMHS can help by then effectively and clearly describing the problems that the child is experiencing so that they can be understood. This is not telling school what to do, it is describing the problem, the effect it is having and the consequences of not making a change.
School can help by properly implementing the SEN Code of Practice. By properly considering the child’s barriers to learning, to implementing the graduated approach, and by ceasing to talk about targets and start talking about support. Get it right and the child will progress.
Until these things happen I believe our children will be stuck in no-mans land until they break. If they break. Then they will be stuck in hell for a while. Maybe then there will be a chance to thrive, but only maybe, because even then they may not get the support and treatment that they need.
I think we need
- A culture that stops assigning blame. Blaming the parents, the teachers, the children, CAMHS….
- Health care professionals that will conduct credible assessments and write reports that clearly describe the difficulties
- To implement chapter 6 of the SEN COP. These children all have multiple barriers to learning that need identifying and support allocated: much of this is FREE and comes with a change in thinking and in culture.
- Genuine, mutually respectful, multi-agency working in collaboration with parents.
I believe that this can be done, but that someone needs to to start making the changes necessary to do it. In the meantime, lets all do one little thing to make no-mans land a little better for these children; today and every day.
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