‘We have no label or a diagnosis with a name’

An honest statement to mark the 6-year journey to our here and now. As it stands, we have no diagnosis of Autism for our little boy and very unlikely to receive one.

We share our journey for the children and families that are undiagnosed. The ones that are unsure, confused, uncertain, and isolated from the closure a ‘real’ diagnosis will bring. The reality of an autism diagnosis can mean many things for the individual and for their family.

Autism itself is a spectrum without an expected presentation, expected progress, or expected outcome. A diagnosis itself does not give you a sudden realisation of understanding or acceptance. The challenges and nature of autism are as unique as each individual and each journey. However, a diagnosis does enable a lot more access to support in a variety of ways. It does create the reassurance of belonging to a community, thus allowing networks for families and children to cluster together in a common awareness.

Inclusion is the vital essence of thriving in life and in society.

Neurodiversity is not a new term, but yet it seems as it is. I believe that Neurodiversity and inclusion are the key terms for families that do not have a diagnosis of autism or of any kind. The terms Neurodiversity and Inclusion heighten the need for a reality of a fully accepting and integrative society where a label or diagnosis is not necessary, instead of where uniqueness is celebrated as the norm.

Sadly, even in modern times, with advances in technology and healthcare, there is a shortfall. This shortfall is for children that are different. For the children that cannot be clearly grouped under a blanket diagnosis. For the children that are very likely displaying traits and characteristics suggestive of the autism spectrum disorder but do not satisfy all the criteria or present understanding.

I could speculate on why there is a lack of confidence in reaching a diagnosis for many children, by drawing on personal and professional experience. The first obstacle is the ability to confidently identify it, as many children  often present with isolated symptoms as they develop, with the full picture only becoming apparent much later on,  to a suspecting parent, teacher, or mindful practitioner

In my opinion, the second obstacle is being able to reach the right healthcare professionals when you have suspicions. Access to continued healthcare appointments in a specified timeframe is important for a pattern of symptoms or behaviours to be documented and observed. The MDT (multidisciplinary) approach relies on an agreed consensus of opinion from professionals including physiotherapists, speech therapists, occupational therapists and educational psychologists, as well as specialist doctors.

Diagnostic criteria are not easy to apply for a spectrum condition. There may be a lack of confidence or hesitancy in attributing a label to a child, or even fear of getting it wrong. No doubt stigma, cultural views, and acceptance in society, also play a role at some level. Bearing all that in mind, not everyone is keen on a diagnosis for multifactorial reasons.

Overall, regardless of a diagnosis or the lack of one, the ultimate goal is to adequately support and encourage children that face any challenge or obstacle.

For those finding themselves a little lost with no diagnosis, I would suggest a few things:

On a final note, using Emma Pinnock’s tag line, we are unique, our children are unique and we must support each other to uniquely take our place.

Dr Mehwish Sharif MBCHB MRCGP
Mum & GP