Professionals Not Understanding Autistic Presentations – Masking

There is such a lot of professional ignorance about autism out there.  Well, I do muse to myself that it could just be in the UK.  We apparently have rates of 1 in 100, but in the US latest figures are 1 in 68.  That tells us that either the Americans are over-diagnosing/have higher rates for some reason – or that the UK is under-diagnosing.  My own thoughts are that the cash-strapped NHS has a directive to only diagnose the most severe cases of autism.  Severity is likely judged by things such as whether the child is disrupting the class at school.  When a child is quiet and compliant at school, their support needs get ignored.  Sadly, this is the case even when parents are reporting their child’s distress and extreme behaviours in great detail and family life is greatly impacted by the fallout of supporting an undiagnosed child.

If you look at the NHS NICE Guidelines for Autism Diagnosis in Children & Young People it says:

http://www.nice.org.uk/nicemedia/live/13572/56428/56428.pdf

1.2.5 When considering the possibility of autism, be aware that:

• signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals
• when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment

1.2.7 Do not rule out autism because of:

• difficulties appearing to resolve after a needs-based intervention (such as a supportive structured learning environment)

The point being, that school (whilst not necessarily “supportive”) can be a routine and structure that enables an autistic child to function with few apparent difficulties.  That doesn’t mean they are not there.  Mental health can greatly suffer if the condition is not recognised and supported.

In the American DSM (which some clinicians in the UK use), it says:

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html

“Diagnostic Criteria for 299.00 Autism Spectrum Disorder

Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

1. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”

So at school, the demands may not have exceeded the child’s capacities, that doesn’t make them not autistic or not entitled to diagnosis.  Many high-functioning ASC children are highly anxious and are so inhibited at school and trying so desperately to fit in, they manage to subdue their behaviour, but this is like a volcano awaiting eruption and once they get home, where they feel safe, they release their anxiety and stress.

Professionals seem to be very keen to blame parenting and fob parents off with parenting courses which of course, won’t make any difference to the autistic child, whether this is deliberate and part of the directive not to diagnose as many as possible, or whether they truly believe there are that many failed parents out there, I will leave you to judge.  They seem to struggle to understand that autism is a spectrum, and that traits vary in their strength and manifestation between individuals.  Because some traits seem more subtle, they are telling parents “some autistic behaviours but not enough for a diagnosis” which is outrageous.

Professionals accusing parents of being the cause of their autistic child’s behaviour is wrong on so many levels.  The environment a behaviour is present in, doesn’t automatically mean that this is the environment causing the behaviour.  So I will leave this message to all those professionals out there, that seemingly cannot think outside of their box, do not understand autism and work in a culture of blame:

Edited to add this research: http://www.tandfonline.com/doi/abs/10.1080/08856257.2014.986915#aHR0cDovL3d3dy50YW5kZm9ubGluZS5jb20vZG9pL3BkZi8xMC4xMDgwLzA4ODU2MjU3LjIwMTQuOTg2OTE1QEBAMA==

“Abstract

This article presents the findings of ethnographic case studies of three girls on the autistic spectrum attending mainstream primary schools and illustrates the difficulties they experience and the ways in which these are often unrecognised. The observations of the girls and subsequent individual interviews with their mothers, class teachers, SENCO’s and ultimately themselves, reveal the personal adjustments the girls make in response to the hidden curriculum and the ways in which these go unnoticed, effectively masking their need for support, and contributing to their underachievement in school. The research also identifies a misunderstanding of autism in girls by some teachers that contributes to a lack of support for their needs, despite their diagnosis. Teachers need to understand how autistic girls present, and how they learn, if they are to recognise the need to illuminate the hidden curriculum. The implications of these findings are that without this awareness autistic girls in mainstream settings are also at risk of limited access to the known curriculum and of social isolation.”