Kristine Lidgerwood sets out some important considerations when parents with autism are involved in care proceedings.
Did you know approximately one per cent of the population has Autism?
Extrapolate that into your own social network! It could be you and you didn’t know it – It could be one of your friends or family members, who has certain “lovable” or “awkward” idiosyncrasies.
Autism is a lifelong developmental condition characterised by differences in social and communication skills, in ways of thinking and in restricted and repetitive patterns of behaviour and interests. There is no template, those who have it will all be unique and possess their own recipe and blend of characteristics. Some will experience over-or under-sensitivity to sensory inputs such as sounds, touch, tastes, smells, light or colours, and may have issues with balance. Body awareness may also be affected so that internal sensations such as pain, hunger, thirst and anxiety may be missed or misinterpreted. Autism imparts skills and talents as well as difficulties. It often runs in families.
It is not always obvious!
People with autism often develop ways of ‘fitting-in’ with social conventions and live full and independent lives, others experience autism as very impairing and may have additional learning or other disabilities requiring specialist support. A diagnosis of ‘autism’ alone is not an adequate basis on which to judge someone’s ability, potential or needs. Of note, there are special requirements under the Care Act to undertake a “needs assessment” specifically in the context of autism, where there is a diagnosis. So often, professionals in social care are charged with working with someone with autism, but who are not trained in working with someone with autism. They may frequently miss behaviours which are a feature of autism as uncooperativeness or intransigence. Handled with that misconception a trusting working relationship with a parent, which reveals their strengths and positives, may be impossible.
Just being awkward?
Consider: Some autistic people can be anxious when using the telephone or using video communication. This seems simple, but can result in immense stress or anxiety for an autistic person, to the extent they are unwilling to facilitate communication in this form. That can be construed as a failure to engage with professionals!
Academics and specialists in the field of autism are now agreeing that there is an ‘identifiable cluster of symptoms’, ‘a profile of autism’. One key feature is that ‘demands’ cause intense anxiety and have to be ‘avoided’. This has been termed ‘pathological demand avoidance’.
Demands include things the individual ‘ought to do’, and because they ‘ought to’ they can’t.
Its impact can affect all manner of things that others may consider quite uncontroversial. For example; the ability to wash, and go to an exercise class. The individual may feel a strong need to control much of what happens in the household. It can create either a dependency on a trusted person or an aversion of someone in authority. It can create great inflexibility.
An area where parents often come to the attention of child protection services is when professionals become concerned that there may be FII!
Alerting signs for FII include: Erroneous beliefs, possibly driven by anxiety, disproportionately heightened anxiety about the child’s health/developmental progress, potentially at a level detrimental to the child’. Frequent health focussed consultations and seeking of reassurance, symptoms not observed independently and/or reporting of new symptoms, claims of ‘rare’ conditions, in-depth levels of background research and “lay” knowledge of alleged condition/ailment.
Vilification of a parent can easily develop when professionals are unaware (as the parent themselves may be) that the parent has autism.
It is therefore of vital importance that the possibility of ASD is explored early by professionals, and ideally in advance of an FII fact-finding hearing.
Academics and professionals in the field proffer that it is far more likely that a child has a complex condition that is difficult to identify or diagnose, than a family fabricating or inducing illness, but the manner in which a parent with autism handles the situation can often deflect professionals attention on to the dogmatic approach of the parent.
Word to the wise
When working with/representing a person where there might be a sign of a neurodevelopmental condition (special needs) or a case featuring multiple and/or changing symptoms, be alert to FII. However, be inquisitive as to whether the difficulties relate to the impacts of neurological or physiological differences within the family, one or both parents and/or the child.
Good enough parenting can be atypical, but it may be most appropriate or all that is possible within the family dynamics.
A parental excess of concern and desperation for support, or for understanding and acceptance, does not equate to abuse of a child. Be prepared to suggest to a parent that autism could be something that should be explored. For some adults, having a diagnosis helps them make sense of their life and helps them manage situations that they have been aware are difficult for them, with a far reduced level of anxiety.
It is incumbent on all those working with families to be open-minded, inquisitive, ask awkward questions and be open to alternative explanations of situations, which ultimately will assist to achieve the right balance of safeguarding and support.