A US mum of a child with autism noticed that trick or treating was particularly difficult for her son. In response, she set up the ‘Blue Pumpkin Bucket’ initiative so that children with similar needs could carry this bucket to communicate they were unable to verbally respond.
This seemed like a well-intentioned idea. However, it received a mixed response from parents of children with additional needs. Some felt it encouraged awareness and support of children with communication difficulties, but others felt it was stigmatising, preventing their child from being treated like any other child.
This debate is reflective of the wider issue of how best to identify and provide support for children with additional needs. Is it best to integrate these children into mainstream services, or is it preferable to create specialist pathways to accommodate their needs?
As someone who has dedicated much of my professional life to supporting children with additional mental health needs, I am all too familiar with the systemic, cultural, societal, and educational challenges that exist for these children. I am aware of cases where a diagnosis has been given without a comprehensive assessment, yet I have also seen older children with seemingly clear and obvious needs which have remained undiagnosed, and so important early supports have not been put in place.
Pros and cons of using labels
I have two nephews with profound additional needs. I often witness my sister’s struggle as she attempts to negotiate daily a world that is not fit for purpose for her two sons. But even she will admit that an ideal terminology, that is agreeable to everyone, does not exist.
Terms like ‘neurodivergent’, ‘autistic child’, ‘child with autism’, ‘ASD or autism spectrum disorder’, ‘special or additional needs’, ‘intellectual disability’, ‘on the spectrum’ and ‘non neurotypical’ all contain their supporters and detractors, so how do we get it right for everyone, without causing offence?
Those who support the use of labels and diagnosis believe this is necessary so that specialist services can be created to provide for children with additional needs. These labels or terms are an attempt to make their lives less challenging. In some cases, these labels are a necessity if you want to procure additional resources for your child.
However, there are others who say these labels separate children from their peers and run the risk of further segregating them from mainstream society. They argue for the need to integrate children with additional needs into the mainstream educational and social systems. They may feel more included, but it can also result in their needs not being met.
Need for early intervention
Parental response to diagnosis can be complex too. In my practice when I propose the need for further assessment because the child may be displaying signs of autism spectrum disorder or attention deficit hyperactivity disorder, there can be palpable relief that there may be an ‘explanation’ for their child’s difficulties and some recognised supports. However, others may be reluctant to put their child forward for assessment because of the stigma attached to these labels or there is a hesitancy in case the move to diagnose is premature. While I understand their reluctance, a delay in early detection can have a significant impact on the child’s development.
So how do we negotiate the challenges of language and terminology when it comes to diagnosis? How do we foster a tailor-made supportive structure for children without creating a culture of exclusion, stigma or separatism? There are clearly elements of political, educational, health and societal actions that show a blatant disregard for people who do not fit the narrow normative.
But perhaps there are those who are genuinely struggling with the contentious language of labelling and find the shifting sands around the correct terminology and approaches are difficult to keep up with. This can lead to a ‘language lottery’, which no matter what you do you will be wrong somewhere.
There are always critics
I am reminded of the story of the man and his wife who were walking through a town with a horse. First, the people jeered the ma