FASD (Foetal Alcohol Spectrum Disorder) affects children in care disproportionately, but it's little understood.
Sue and Tony Sharp are long-term foster carers looking after twin 10-year-old boys with a diagnosis of FASD along with a number of other diagnoses - and all this on top of the trauma the boys experienced in their early years.
This is the third in a series of four blogs about FASD and trauma, based on a briefing that Sue and Tony developed in association with The National Organisation for FASD and the East Hertfordshire and Area FASD Support Network.
Read the other blogs:
FASD affects children in care disproportionately, but it's little understood. It is believed to affect more people than autism. It’s been called a “hidden epidemic.” One study led by Dr Ges Gregory in Peterborough found a history of prenatal exposure in 55 out of 160 health assessments for looked after children (34%) and in 34 out of 45 medicals for adoption.
Can we talk about consequences?
Children affected by FASD often react badly to consequences and may not learn from them. Due to their brain-based issues and lack of understanding of cause and effect they will often make the same mistakes over and over and repeat them in different environments. Modelling behaviour rather than punishment is key. Natural consequences can be effective (if a toy is thrown and breaks, it goes in the bin and the child can’t play with the toy).
In school, consequences must be concrete, immediate and simple i.e. - removal of an item in short bursts only; maybe aided with a visual timer to help allow for lack of concept of time. It is not advised to remove a treasured item like an electronic device that might also help self-regulation. Difficulties with memory and linking cause and effect means a child is not able to understand why they are being punished, which can lead to further challenging behaviour. Always be positive. Encourage and teach wise choices.
Learning by doing
Role play may be a useful tool. Try practising appropriate behaviours, maybe before a specific situation or transition that may be challenging, or after a situation where behaviour was not appropriate. Try ‘mirroring’ the child’s behaviour. Meet them ‘where they are at’ and show them the way out.
Children with FASD do best when caregivers and educators use concrete terms and avoid phrases with double meaning, i.e. ‘jump onto the computer’, ‘it’s raining cats and dogs’. Say exactly what you mean. Keep instructions concise and broken down into achievable chunks. Social and emotional understanding is often less than chronological age so we often need to think younger. Consistency of boundaries and routines are imperative, chronic short-term memory problems bring the need to repeat, repeat, repeat instructions and knowledge for better understanding. Input should be short. Children with FASD are easily overstimulated leading to shutdown at which point they can take in no more information. When children are also living with trauma this shutdown effect is exasperated. Structure is the glue that enables a child with FASD to make sense of the world.
- Think brain damage.
- Be curious and ask what is happening for that child at any given moment.
- Listen. They will be telling you what they need but it will not always be easy to ascertain.
- Adjust your expectations.
Be ready to change the environment, you can’t change the child’s brain.
FASD and education
Carers need to work closely with educators and professionals. Most children and young people with FASD will not have a learning disability (an IQ <70), but to achieve they will need considerable individualised support as if they had a learning disability. The older they get the more obvious this is likely to become. All children on the FASD spectrum learn in non-traditional ways. Their profiles are ‘spiky’. They likely will have difficulties with maths, reading, time, money, organisation, abstract ideas and age appropriate tasks. Receptive language (what they understand) is often masked by strong expressive language (what they say). They will often learn better in a multi-sensory way. Music and movement helps. They will need learning tools, now/next boards, visual prompts and fewer spoken instructions. Information will need to be repeated.
Looked after children with FASD will need therapeutic personalised education rather than following a normalised curriculum. The key tool will be the personal education plan - a formal educational assessment that is made each term and allows relatively rapid changes to take place. It must focus on and develop the student’s learning needs and strengths rather than following what would be expected of a typical child of their chronological age. Specialist schooling is often more suitable due to therapeutic teaching practices, relaxed curriculum, smaller classes and easier transitions between lessons. Mainstream schools should have robust SEN support to help a student with FASD succeed. Schools are required to make ‘reasonable adjustments.’ Learning difficulties may lead to frustrations and unwanted behaviour. Challenging behaviours are a communication of an unmet need.