I am a Social Worker and Training Practitioner working with foster carers and the children they look after in their homes. However, as a father of a child with an Autistic Spectrum Disorder (more specifically Asperger Syndrome) I am all too aware that difficulties can and do occur outside of the family home.
As parents we sought a diagnosis due to prolonged difficulties our son was encountering with his school. In our family we had accepted his traits as being his individual personality and more or less evolved family routines around him. I believe this has been an unconscious embracing of his needs, and is something that is much more pronounced than is usual in a family without an autistic member. His siblings have learned a tolerance of special needs; his younger sister has informed her teacher she wants to be a psychologist to support vulnerable children. Yet as a child and adolescent he has been very easy to parent, difficulties have always occurred when he has been away from the supportive and understanding family environment. This brings me to school and his diagnosis; school is an environment to which a child adapts and a diagnosis is a medical process to find answers to individual difficulties. As a child with an ASD he could not comprehend why he had to adapt to school and innocently found himself at odds with quite basic rules. The diagnosis was necessary to help resolve the impasse he faced as an adolescent.
As a practitioner, though, I have often thought about how a child with an ASD could cope in public care and whether or not their needs are going unmet. After all by definition they are living away from their parental home. Parents and children may well receive much needed support by way of regular breaks:
Pete and his mum benefit from regular weekend respite from the same foster carers, and they all have got to know each other well.
This type of fostering experience for children with an ASD is fairly common and there are many excellent specialist respite foster care services nationally, and they help to keep child and family together through this support. However what are the experiences of children who are in full-time foster care?
Children in foster care experience a range of adversities, and often require fostering due to abuse and then there is the destabilising effect of actually living with a substitute family, where there is a tendency for them to experience a multitude of different placements (it is not unusual for children to have three or more carers in a year). I first came across Asperger Syndrome at work about eight years ago, it was in relation to a young male who presented quite challenging behaviour both at school and with his foster carers, of whom there had been a few. In the office we all agreed how he had had his fair share of difficulties and that this condition seemed to go some way to explain his behavior.
On the whole the presenting behaviors of children in public care may well be automatically (and often correctly) attributed to an attachment disorder or trauma rather than look at an ASD diagnosis. It is understandable for most children, who have been abused to find it difficult to make and sustain relationships with an adult caregiver, particularly when the source of abuse may have been a parent. It is also to be expected that traumatic behavioral responses arise from distressing events or for children to transfer negative emotional feelings onto a foster carer and present problematic behaviors due to maltreatment. A fostered child with an unfortunate history of maltreatment may well appear isolated, respond aggressively to slight changes and find basic communication difficult. This can all be the social response to a history of parental neglect. While the infant in a nurturing environment should develop physically, intellectually, emotionally and socially, the child reared within an abusive environment may fail to thrive in any or all of these four areas and they will often experience attachment dysfunction and traumatic behaviors.
Autism is a profoundly misunderstood set of conditions and people with an autistic spectrum disorder find communication and socialization difficult. They also develop an intense dependency on routines. People with autism are highly individualistic; some require constant support with little or no verbal communication while others may undertake academic research maybe requiring some practical help. The condition does affect an individual and they do encounter difficulties within every day life. Therefore autistic children require understanding and support from their adult carers, particularly as their behaviors can often be seen as being problematic or difficult. It can also be a hidden disability often going undetected or the behavior being attributed to alternative reasons.
Sally was diagnosed with an ASD whilst in her teens due largely to the perseverance of her carer; her extreme behavior had been seen as trauma and attachment difficulties, due to her infant maltreatment, (including sexual abuse). Prior to the diagnosis she experienced multiple placement breakdowns and was clearly an unhappy little girl.
Through my discussions with foster carers who look after autistic children I have seen that they too seem to also unconsciously evolve family and home around the child. This appears to be not too dissimilar to birth families with autistic children.
Tom has classic Kanner’s autism and was matched with a foster carer who had expressed an interest in looking after autistic children. The Social Workers, who did not have specialist training or experience, often queried how the carer managed to look after Tom.
His foster carer thought this was an annoying question and that it showed how little the social workers understood about autism, particularly as she was just getting on and looking after the child whom she wanted to look after.
Tom, Sally and Pete’s three quite basic cameos are all fairly typical experiences for fostered children with autism and they demonstrate the diverse care needs that they have. There is, though, a commonality in these needs that are based on the ASD Triad of Impairment (social communication, social interaction and imagination) but as with all children they have very individual needs. All children who are fostered have fairly profound needs but are foster carers who look after autistic children specialists within foster care. Certainly looking after any child brings with it some degree of difficulty, but caring for an autistic child presents very idiosyncratic complexities associated with autism. Alongside the ASD a fostered child will have a range of adversities including attachment dysfunction. Importantly the intervention strategies to look after an autistic are also different to those required for children with an attachment disorder. Substitute care can over time help to redress the emotional and physiological consequences of infant maltreatment. Through a nurturing fostering environment a positive attachment, or relationship, with one person (a carer, teacher, friend etc) can then be transferred to other people and situations. This though is somewhat different with an autistic child where adaptation strategies will be encouraged; an autistic person can learn to queue for the doctors but then will not transfer this to queuing for the dentist, because the doctor and dentist are different. Similarly a positive relationship is specific to that person and may not represent transferable social skills to other people by the autistic person.
Nationally there appears to be no reliable figures as to how many children there are with autism living with foster carers. While there are various estimates about how prevalent autism is within the general population, (with one estimate being 1 in 110 individuals having autism), there is also a high parental separation rate amongst parents who have autistic children. This combined with the autistic child’s higher than average needs may well mean that there is a disproportionate amount of children who are in public care with autism, particularly when looking at those who may well not have a diagnosis. There are nearly 60,000 children in England who are in public care at any one time. Taking the above estimate of the prevalence of autism there will be approximately six hundred autistic children in public care. Though we are not able to ascertain this accurately I personally feel that this is a low estimate, but it does never the less demonstrate that there is a significant number of children with autism who are fostered. However within each Local Authority area the actual number of children affected is quite small, maybe only three to ten children in each authority.
In the North East, through the National Autistic Society, we have set up a nationally unique and innovative charitable project for autistic children who are fostered and their carers called the National Autistic Society (NAS) Tyne and Wear Branch – Foster Care Support. The Fostering Network, (as well as NAS) is also supporting us along with most of our local Members of Parliament and Local Authorities. Whilst we are a geographic group we are nationally unique in focusing on children with autism who are in foster care and are keen to promote their support needs outside of the North East. Through the group we hope to be able to galvanise local knowledge and experience to identify the specific needs autistic fostered children have and plan appropriate services for them. We intend for this group to be a regional facility and hope that it can have national influence.
There is a danger though in over diagnosing children who are in care with autism. The diagnosis has to be measured and quite often the early history of a fostered child is not known, and this is crucial information for the diagnosis. It is right to be cautious because a medical diagnosis is for life. While training foster carers I have seen one or two label a child with autism, without any proper diagnosis. We all want an answer to the problems we see. Children in care often have difficult situations to work through and this can be transferred to their foster carer who may well see some form of medical answer as an easy solution. Any approach relating to autism and children, particularly fostered, has to be cautious. However it does seem that there are children who are fostered with an ASD and these children and their foster carers should receive specialist support. It is our hope that we can go some way to ensure that all autistic children have a supportive and understanding home to help them to cope more fully with the outside world, which sees them as being different and difficult.