“My husband left home last month, partly because of our youngest son, Steven, aged 7, who is severely learning disabled. Steven’s head-banging has got worse to the extent of knocking himself out and there seems to be nowhere for him to go except in and out of hospital with people saying I should expect this because of his handicap. I can’t manage on my own but don’t want to have to send him away.”
Children often experience a marriage break- up as something they have caused by their own bad thoughts and behaviour. They cannot understand that their parents are separate beings involved in their own problems. Children with a learning disability can feel even more to blame when a parent leaves. Their fear that they have caused the difficulty is compounded because the rest of the family often agree and, like Mrs Y.W., see it as an external reality. An untreated reservoir of guilt in both child and parents about the existence of learning disability can play a corrosive part here pointing to the need for support at the earliest stages.
Problems of extreme self-injury are painful to witness and difficult and dangerous to manage. Few places wish to deal with this, especially when there is staff shortage and lack of staff support. Head-banging, eye-poking, self-mutilating may initially appear alien and frightening. However, the problem is a familiar one. Daniel, aged 16, an intellectually gifted adolescent, failed all his GCSE’s when his father left home. His attacks to his head were silent yet they knocked him out educationally as powerfully as Steven’s blows knock him out physically. Marie, aged 25, had 3 broken engagements and a new partner almost every week. Her attacks on her capacity to be part of a couple knocked out her partners and herself emotionally. However, when the method of self-attack takes a different form we hear, as Mrs Y.W. does “It’s because of the learning disability”.
Sarah, aged 20, a profoundly learning disabled young woman, blinded herself in one eye after her mother had died. She was in a hostel where her workers did not think she understood the concept of death. They never discussed with her why her mother had stopped coming. It took support for the staff before they could realise that Sarah’s action had meaning and was not because of her learning disability. Such views strip all meaning from behaviour as well as being wrong. Disability can wear away emotional resources leaving the individual vulnerable to emotional disturbance but it does not cause the behaviour; nor does lack of cognitive intelligence take away from an individual’s capacity to emotionally understand what is happening around them.
Mrs Y.W. has understood there is meaning in the timing of Steven’s behaviour and perhaps she can discuss this with him, but she rightly points to an appalling lack of national provision and she needs help now. Bethlem Royal Hospital researchers Murphy, Oliver & Corbett found that out of 596 self-injuring children and adults in one region only 12 were receiving any kind of psychological treatment yet pioneering services are facing cuts.
How can Mrs Y.W. manage? Professor Kolvin comments, “there is no possibility that children with such multiple and acute problems can be assessed and managed appropriately without such a training and research resource as Hilda Lewis House and there are few places in the UK that can deal with such serious problems in the short term whilst arranging plans and care in the long-term”.
The Hilda Lewis House considers that families like the Y.W.’s need the broad-based service that combines weekday residential treatment (in order to keep the family contact at weekends), support for parents and community links. They add that “Head banging is common in normal small children and rarely persists but it can be more persistent in severely learning disabled children. It matters a great deal to find the meaning of the behaviour. Sometimes there is an untreated underlying depression”.
However, despite the scarcity of provision, there has been inspiring co-operation between the few psychoanalytical and behavioural psychotherapists specialising in this work, which bodes well for the future. However, until there is adequate funding on a national level for this work, Mrs Y.W. and Steven will receive patchy support.