Language, Labels and Autism: From Disorder to Condition… and Beyond

Text: Nicole Schnackenberg | Illustration: Ingrid Sanchez (@creativeingrid)

“There needs to be a lot more emphasis on what a child can do, instead of what they cannot do.” – Dr. Temple Grandin

 

Finally! Professionals are beginning to move away from the use of ‘disorder’ in their description of the set of behavioural markers most commonly diagnosed as autism. Such a move has come not a moment too soon. Gradually, the term ‘autism spectrum disorder’ is being replaced with ‘autism spectrum condition’ (ASC), a description that still lags behind the ideal in the minds of many but, nevertheless, goes some way towards acknowledging that autism is not a disorder but simply a set of observable phenomena, without assuming that there is anything intrinsically ‘wrong’ with the person in any way.

Legislative Changes

There have been a number of legislative changes that have underpinned this important move. The Children Act (2004), which was an update to the Children Act 1989, led to the creation of multi-disciplinary teams within Children’s Trusts, integrating health, education and social services. Such a move was prompted by the tragic death of eight-year old Victoria Climbie in 2000 in London, who was mercilessly tortured and murdered by her guardians. The response to her death prompted the biggest shake up review of safeguarding procedures in the UK ever undertaken, with 108 recommended changes being made to safeguarding children regulations. Many of these recommendations were adopted into the Children Act 2004.

The creation of multi-disciplinary teams following the Children Act (2004) aimed to increase collaborations between different professional groups and dismantle the barriers between services; many health, social care and education services were involved for a number of years in the life of Victoria Climbie, yet an acute and shocking lack of communication between them, coupled with a sense that other services were taking responsibility for her welfare, led, in no small part, to her appalling death which absolutely should never have been allowed to happen. The legislative revisions called for new information-sharing processes, placing the needs of children and families at the very centre of professional planning and delivery.

Common Assessment Framework

Following on from this, the Common Assessment Framework was put into place in 2006. This was to be a joint record, used by all agencies involved with a child, with a view to improving information sharing between different agencies. Alongside this, the Government made a commitment to introducing a unified curriculum for the early years; the Early Years Foundation Stage. This was rolled out across England in 2008 with one of its key aims being to plan for each individual child using sensitive observations and assessments.

Educational, Health and Care Plans

Through the Common Assessment Framework came the introduction of Education, Health and Care Plans (EHCPs), which replaced Statements for children with special educational needs (SEN) in 2014. These were expounded in the Children and Families Act bill of 2014, within which the SEN system was extended from birth to 25 years, giving children, young people and their parents greater control and choice in decisions about their education and wider lives. Numerous positive changes exist in the new bill, not least a greater acceptance of the need to consult the young person and for professionals to find a ‘common language’. This common language appears to be moving away from speaking about autism as though it is a disorder or deficit and beginning to appreciate the particular sensitivities, gifts, aptitudes and perspectives brought by people with a diagnosis of autism.

A Good Start… But Some Way to Go

Unfortunately the language of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) continues to revolve around deficit- and impairment-related utterances yet the hope is that with changing perceptions within professional communities, this language might too one day change. Indeed, the language used to describe various emotional, behavioural and psychological struggles is changing radically at many levels of the care, health and education systems in the United Kingdom, with the shift in terminology signifying a rejection of terms and phrases perceived to have negative connotations. Moreover, whereas earlier terminology implied that the groups in different diagnostic categories were completely different, the more recent terminology places individuals on a dimension that differs primarily in terms of the severity of the difficulties they encounter.

The language of ‘disorder’ is very much steeped in the medical model, which is largely rooted in the belief that psychological and behavioural manifestations outside of the ‘norm’ are primarily attributable to genes and biology. As we have explored in previous posts, we are yet to find and define clear biomarkers for autism spectrum conditions (ASC) and are certainly not able to say that ASC manifests in a particular way for a particular person; ASC looks very different in each and every person with the diagnosis. Hopefully, we are moving towards a greater appreciation of the uniqueness of each and every person, whether with a diagnosis of ASC or without.

The Call to Each of Us

We can all support this move away from viewing autism and other diagnosable phenomena as ‘disorders’ by minding the language we ourselves use. In this simple way, we can play a vital role in moving towards a discourse centred on the value of all people, steeped in the knowledge that each and every human being has an unfathomably beautiful gift to offer to the world.

 

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