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Dublin: 11 °C Tuesday 23 December, 2014

Column: Autism – moving beyond labels and limits

It is vitally important that we look beyond the labels and limits we place on children with developmental challenges, writes Karen O’Connor.

Karen O’Connor

WHEN I FIRST started working with children in 1994, I saw a maximum of one child per week with autism. Now, 20 years on, if I see five children per day at least three of those will have already been given a diagnosis of autism. We have gone from having 1 in 1,000 children diagnosed with autism in 1984 to 1 in 100 in 2014. This begs the question: what is causing this alarming rise in diagnoses?

Many argue that better diagnostic techniques are picking up kids who would have previously slipped through the system. But University of California, Berkeley researchers Dr Hinshaw and Dr Scheffler argue that the constraints of educational systems have little space for any child who may be ‘different’, and that an inability to conform to the norms of how we expect children to behave leads to an over-labelling of their differences.

In order for them to successfully access educational support systems, children must have a diagnosis, a label – they must fit into a box that entitles them to an SNA or a resource teacher. Many others, like US autism expert Dr Bryan Jepson maintain that ‘autism’ is merely one symptom of an underlying disease process that affects the immunological system, the gastrointestinal system and the toxicological system, as well as the neurological system. Whatever the cause, we are now seeing an increasing number of children who need extra developmental help to allow them to reach their potential.

A box-ticking type of assessment process

Simply basing our diagnostics on a collection of behavioural symptoms often leads to a box-ticking type of assessment process. For example, if a child exhibits behaviours X, Y and Z then that child has autistic spectrum disorder (ASD). Shouldn’t we be asking if there are other factors that may be causing those behavioural symptoms? This leads me to another increasing problem I have witnessed over the last decade: that of the hopelessness experienced by parents who have gone through the assessment process with their child.

Having languished on extended waiting lists for lengthy periods, fearful that a neurological window of opportunity may be closing for their child, they seem to be increasingly frustrated by the box-ticking approach to diagnosis. Often when ASD is confirmed they feel it is at odds with their knowledge and experience of their child. When they express this, they are simply told to accept it and get on with their lives, now stripped of hope for their child’s future.

If we view each child as an individual and look beyond the behavioural symptoms, maybe we will not only get a more bespoke method of assessment but we will also be able to tailor-make a treatment plan. I regularly see children arriving in my clinic with a diagnosis of ASD who have serious underlying sensory processing disorder problems. Many of their behaviours that are symptomatic of ASD are really as a result of their inability to integrate their sensory processing systems.

Once I deal with these underlying problems, they no longer exhibit the collection of behavioural symptoms that lead to the initial ASD diagnosis. Sensory processing difficulties can influence self-regulation, movement, learning and interaction with others. It can interfere with skills that support performance, such as engagement and attention, as well as skills that enable the learning of new motor skills.

Viewing each child as an individual with hopes and dreams

It is vitally important that we look beyond the labels and limits we place on children with developmental challenges. We must restore hope to parents that their child is capable of reaching their full potential, whatever that may prove to be. We must inform and educate all professionals to look at each child as a wonderful individual with hopes and dreams.

A diagnosis of ASD can initially be devastating to a family; this alarming rise in incidence presents a huge challenge to individuals and society in general. With the increasing pressure on our educational and health systems, these children are not getting the support they require which is leading to a generation of dependent adults who may not be capable of living independently or actively participating in the work force.

We must do better, we must look further than the collection of symptoms and we must ensure that every child has the right to achieve their full potential.

Karen O’Connor is a speech and language therapist.

Karen is hosting the Moving Beyond Labels and Limits Child Development Conference 22 March at the Burlington Hotel, Dublin. International speakers include occupational therapist Sheila Frick and biomedical specialist Dr William Shaw.

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