Fifth edition, 14 July 2020

Prior to lockdown, within the organisation I work for, an increasing number of parents of autistic young people and children were contacting the voluntary sector seeking support for their families. These parents were seeking support after being placed on child protection plans within the past six months.

In some cases, these children were initially placed on child in need plans because their child had been unable to access school for up to two years. Reasons given for this were: school refusal, anxiety, and physical presentations which were described by educators as false or psychosomatic symptoms. These families were suspected of fabricated and induced illness, compounded by concerns regarding the social and emotional development of the children involved.

Within social care, the emphasis is on relationship–based approaches and holistic interpretations of need. The needs of autistic children, parents, and caregivers often fall under our medicalised models of care, rather than social models of need. This presents challenges specific to the autistic community.

One of the greatest challenges in identifying educational or support needs of autistic children and young people, are their individual sensory challenges and the so-called ‘spikey profiles’ relating to this. These ‘spikey profiles’ can disguise the level of need, capacity or capability of an individual. 

Examples of this are high support needs which are disguised by high levels of skills in other areas; such as stronger verbal skills hiding poor comprehension. An academically capable young person with poor visual processing may not be able copy answers from a board or follow the words in a book.

Many autistic people experience co-morbid difficulties, with a higher proportion of autistic people living with Ehlers Danlos syndrome; hypermobility; gastro-abdominal issues; and dyspraxia, than the general population. If the average fifteen-year old cannot tie their shoelaces this could be perceived as neglectful; if an autistic fifteen-year-old with hypermobility, dyspraxia, and poor bi-lateral integration cannot tie their shoelaces this would be expected. 

There are huge challenges for social workers identifying challenges which may be profile-dependent, which are typical of an individual’s developments, rather than those which could be indicative of neglect or parenting challenges.

Since lockdown, a large proportion of the parents who initially contacted us regarding child protection plans have begun reporting that the needs of their children have changed. Without the challenges that school can bring, many parents are reporting that their children are presenting with increased pro sociality, less aggression, less anxiety, resulting in a happier household. 

Some children, who parents report would have previously isolated themselves in their bedroom, a safe space, to stay away from other family members are now becoming involved with family mealtime, and family activities.

Whilst this is not the case for all families, we have observed that those families where the initial concern was an autistic child not attending school and the parent reported illness; those families who have chosen to keep their child at home are reporting the physical symptoms have disappeared; the ability of their child to self-regulate has improved.

The concerns raised at the previous children protection conferences are suddenly null and void from the perspective of the family. Nevertheless, this needs to be evidenced for a local authority to be satisfied that the children are safe. This creates a significant challenge when social workers and social care practitioners are restricted in their ability to access the children and household. Indeed, the intervention of social workers in this new, sacred environment, could undo all the progress made by the family.

From our perspective, within our organisation, we have observed social workers re-organising how they work within the multi-disciplinary framework. Taking a step back from the direct work and supporting the voluntary or third sector to step in. For those workers who have strong relationships with the children in the family, socially distanced visits to the garden have worked, but for those autistic children who have challenges in building relationships there has been some interesting re-working by social workers.

Video calling has become a staple tool to keep in touch with families, and see the child, but many people find this method of communicating challenging. Instead, the community groups which provide food parcels or drop off activities for children; the voluntary groups visiting families or providing online groups to support the children directly. The wider family members who agreed to step-in at the family group conference are now providing direct support. 

Much of the great work we have seen by social workers has been about recognising the importance and validity of the wider networks and truly working together to validate the reports of parents. Good social workers right now are mobilising the village it takes to raise a child.

Conclusion

Children need to develop skills and social networks which promote their capacity and ability to overcome the challenges in life. However I am puzzled by how we can do that for some autistic young people when, even when those young people enjoy school, they are faced with barriers and adversity that are not experienced by their neurotypically developing peers.

If school or the schooling environment is the trigger for some of the physical ailments experienced by the child; if it creates such anxiety that presents with school refusal, self-harming, physical aggression towards other family members. Whilst this article clearly poses more questions than answers, I think it is important that we reflect on the aetiology of challenges. 

Stay curious. If a parent is reporting that the challenges experienced by their autistic child or young person have dissipated during school closures, this may be the case. But it does not mean that the child, the parent, or the school is at fault.

Parents have the right to electively home educate their children; we inform parents of this right when we work with them. Nevertheless, not all parents have the emotional, physical, or environmental capacity to be educating their children at home permanently. How these children can be integrated back into education, or how they have been educated at home requires a conversation. 

If it is the case that the more difficult behavioural presentations, or physiological symptoms expressed by some of the children we work with have mostly disappeared during lockdown period then it is not the family home that is the cause of the difficulties the families experience. 

A systems approach is more helpful as it is clear medicalising the autistic experience is not working. Instead now is the ideal opportunity is explore alternative educational provision, and the more holistic needs of the child.

Nikki Rutter

Director of SENDA (SENDA.org.uk)