The role of social work in the lives of autistic people and their families in England was recently examined in a study by the Chief Social Workers for Adults and the Chief Social Worker for Children and Families.

The study was conducted to have a better understanding and oversight of three key areas in the context of social work practice with autistic people:

  • how responsive social workers were to the needs of young adults and their families
  • what barriers there were to enable more effective interventions
  • how things could be done differently to improve outcomes.

This was because despite a raft of legislation, regulations, and guidance, public services don’t always offer the support that families need, and at the time they most need it.

The analysis led to a series of recommendations based on conversations with families and practitioners as well as the findings from the care experiences they reviewed.

Social work and autism

There are 16,000 registered social workers in adult social care services and 29,000 in children’s social care services. A further 2,500 work in the NHS, primarily in mental health services.

Social workers involved in an autistic person’s care have a duty to promote their human rights, safety, and wellbeing, assess their needs and help facilitate access to the right services. Their role is to ensure that people who need care and support receive that help in a way that enables them to have a voice, stay safe and live fulfilling lives.

In adult social care, autistic adults may typically be supported by social workers in learning disability or mental health services. Many local areas have established dedicated disability services that work with children and young people from birth to 25 years, with the specific aim of ensuring that families experience a smooth journey from the early years right through to adolescence and towards adulthood.

The study focused on 61 autistic children and young people, split across the four local authorities  between June 2019 and September 2019. The identity of the participating LAs will remain anonymised.

Importance of early and continuous support

The study found that autistic young children were more likely to receive a diagnosis of autism when they had other significant health or care needs and those families with an early diagnosis were more likely to receive support throughout childhood.

Where autism was either not recognised until early adulthood and/or well understood, there were increased levels of family stress as the autistic young person approached adulthood.

In many cases, this resulted in a crisis-driven placement or in the worst instances, hospital admission where the family felt no longer able to support the autistic person at home. The research showed this disruption to family life was deeply traumatising for everyone concerned.

Another key finding was that there was not enough social work support where families were coping with very challenging behaviour, and the paper concluded had this been provided, it might have avoided the family breakdown that often later ensued.

 

Parent C

“It has taken us, and many other parents, a very long time to firstly get a diagnosis for our children.
“From approximately 13 months I knew my child wasn’t quite the same as other children his age. I flagged this up with various professionals and it took until he was aged 9 before we got a formal diagnosis – a number of professionals have agreed that the behaviour was certainly meeting criteria for autistic spectrum disorder. We felt that we had missed out on 9 years of intervention, training, and education, so that we could understand autism and its various characteristics.
“After diagnosis, we received no training, no help, no support. We would have welcomed all the advice and support on how to tailor parenting to best suit an autistic child. “We learnt mostly through asking parents who had similar difficulties and from looking at the internet.”

 

Experience of school and of education, health and care plans

Social work involvement in the development of education, health and care plans (EHCPs) was varied across the care experiences reviewed and the study found that there was sometimes an overreliance on schools to support children and families, which eventually led to untimely social work intervention at the crisis point.

It found that social workers tended to be more actively involved when a child was in need, looked after, or on a Child Protection Plan.

The paper recommended that social workers should support opportunities to work together with all parties and ensure all the ways to support the child in school are fully explored as strong, skilled social work involvement ensured a strong social care focus in the development of EHCPs.

Experience of children’s social care

The study found that there was a wide range of reasons why families of autistic children were involved with children’s social care services. Yet even where the sole reason for contact with children’s social care was because of the social care needs of an autistic child, there was a tendency to use the social work assessment as an opportunity to judge parenting capacity through a child protection lens rather than through a lens of social care need.

This has long been a complaint of families caring for disabled children and fear of being labelled a bad parent or worries about being blamed as failing as a parent, may limit families’ willingness to seek help.

The chief social workers said they were particularly troubled by reports they received from families who had been brought into the child protection process because of disagreements with practitioners about how their child’s behaviour could best be managed within the home setting.

While they said there will be instances of child abuse or genuine poor parenting, they also think it likely that in some instances, a different approach could be taken to explore the most effective strategies for positive behaviour management that families can use without assuming a child protection strategy is required.

Adolescence as a time of transition and change for autistic people

The paper highlighted that adolescence is well recognised as a major pressure point for families. Many families tried to provide the very best of care yet despite their relentless efforts, the teenage years often brought an escalation of distressed behaviours that was overwhelming for some families.

Parents reported that they had been able to support their child in the early years of childhood but found it increasingly difficult as the young person, who not only grew bigger and stronger, but sought independence at a level that could not always be safely enabled.

This could sometimes lead to aggressive and even violent behaviour from the young person which in turn, led to some families living under enormous pressures. It also often led to school exclusions or contact with the police, having been called to the family home or because of a public incident. On occasion, this also led to family breakdown and placement in residential care or hospital.

The analysis found where a child had received an early diagnosis and steady support which changed according to the changing needs of the child, families were much better equipped to manage, both practically and emotionally, the challenges of adolescence and young adulthood.

Also there were better outcomes where social workers helped families consider, through mediation, how autistic young adults could separate from their family and start to live more independently, while remaining at home or moving out into in the community.

Diagnosis of autism and co-occurring conditions

Many of the young people in the study had multiple needs in relation to their autism and were often assigned to learning disability or mental health services. While social workers in learning disability services were well equipped to respond to their needs, sometimes a young person’s autism was overshadowed by their learning disability diagnosis.

This was even more prevalent where the young adult also had mental health conditions, with mental health services not always fully understanding, or catering to, their needs relating to their autism. This sometimes led to a misunderstanding about the root cause of behaviours of concern and even misdiagnosis.

Upon reflection and conversations with practitioners, the chief social workers felt that stand-alone autism services integrated with health and care services could include specialist clinical staff and social workers. This could lead to more creative and personalised service development as well as earlier access to sensory reviews and support to improve living environments.

Where there was a jointly produced care plan between health services and social workers, this led to positive outcomes for young adults and their families.

Recommendations for better social care support 

The paper recommended that social workers maintain contact with autistic people regardless of their current setting, and that they build strong relationships across agencies.

It also recommended that a national network of specialist social workers and other practitioners (for example, mental health nurses, teachers, youth workers etc) should be established to ensure best practice and new evidence in working with autistic people is shared and adopted in practice.

Having the right knowledge of autism was also found to be crucial for best practice. The chief social workers, therefore, call for the National Institute for Health Research to review their research programmes to ensure that progress is made in determining best practice for supporting autistic young adults to live independently or in community-based settings. 

Another recommendation was having a qualified social worker with specialist knowledge and skills to work with autistic people, and across the full spectrum of health and care, which supported the NICE quality statements that set out that autistic people should be offered a named key worker to coordinate care and support.

The paper concluded: "We recommend that the refreshed autism strategy acknowledges the value that social workers’ professional knowledge and skill base can bring; ensures inclusivity and removes barriers to participation; embeds personalised approaches in practice; enables choice and autonomy using the least intervention possible to ensure safeguarding, and promotes the social work profession as the lead for upholding this value base in practice, when working with autistic people."

 

Chief social work officers: Isabelle  Trowler, Chief Social Worker for Children and Familie, Lyn Romeo, Chief Social Worker for Adults (at time of study), and Mark Harvey and Fran Leddra