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.
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.
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.
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 man saying if he was walking beside the horse, he must not be able to ride a horse. So, to prove them wrong he got up on the horse to show that he could ride it.
A little further down the road when he was up on the horse, other people began to jeer him for being selfish for riding the horse while making his wife walk beside them. He then got off the horse and let his wife ride on the horse. But then another group jeered him and said he was weak and a pushover for letting his wife ride while he walked alongside. Then they both get up on the horse and as they continued on their journey they were jeered by others who claimed they were cruel making the horse carry them both.
The moral of this story is that no matter what you do you will be criticised by someone. This has never been truer in the age of social media.
Some weeks ago, a group of celebrities took part in the ‘A Day in My Wheels’ campaign to raise awareness of wheelchair users. The response to this campaign was a mixture of admiration for the campaign, but it was also accused of being tokenistic, insulting, and insensitive. So, who is right and who is wrong?
I try to consider the ‘intent’ behind the use of terms and initiatives that people use rather than just the language. Not all mistakes or errors are intended to be offensive, and perhaps we need to be more tolerant of those who get it wrong accidentally as opposed to vilifying the misuse of language.
There is a difference between deliberately getting something wrong with the objective of creating distress and accidentally stepping onto a language landmine from time to time.
In an era where we put names on most things, we need to be careful about labelling children with pathologies for non-conforming behaviours. We do not want a case where every behaviour that does not fit into what society describes as normal gets a pathology or a label. Surely the real spirit of inclusivity is respecting difference and integrating it and not segregating or highlighting the difference.
There may be an over-correction in our use of inclusive terminology, and perhaps we need to save our disagreement and condemnation for those who are intending to do harm as opposed to those who merely get it wrong.