World Autism Awareness Day
Friday 2nd April 2021
As we lead up to Friday, the Forum will be raising awareness. We will be looking at 3 different families, how they are affected and their daily struggles. Each parent’s case study will focus on one of our priority areas. Our case studies aim to help other parents feel that they are not alone and that problems can be halved if shared.
Our second case study focuses on Mental Health and tells the story of an autistic child’s journey from their parent’s viewpoint.
“The shoes are close to falling apart but they are comfy; the world sees a scruffy teenager but we know the reality”
I have a child diagnosed with Autistic Spectrum Condition (ASC) who struggles with sensory overload and burn out from the demands of having to ‘mask’ every day at school to blend in. They don’t like to be touched so no comforting hug when they leave the house. Shoes feel uncomfortable so they wear them with the laces undone but then get told off at school for this. The shoes are close to falling apart but they are comfy; the world sees a scruffy teenager but we know the reality.
Noise cancelling headphones are an essential part of life when they need a break from the distracting noises around them; even a ticking clock can be a problem they can’t turn their focus away from when the class might be working in silence. The noise in communal areas at break and lunch is really hard and there is conflict between the desire to spend time with their friends and knowing they need to be alone to ‘recover’ for the next part of the day. They love learning, their school community and their friends but day after day, it’s all too much. On first meeting, you wouldn’t recognise our child is autistic as they mask so well but inside they are falling apart trying to cope.
When they arrive home, they are so exhausted and overwhelmed that they head to their room for an hour to just lie on their bed with no demands or social interaction.
Pathological Demand Avoidance is a large part of their autism profile. The ‘how was your day’ conversation and provision of snacks etc. have to wait until they are ready. Some days they are so triggered that they can’t keep their emotions in; these are the days I call ‘needing to rant’. It is often about a teacher or lesson and their fixed thinking means that issues and feelings of a possible injustice or not following a rule or a misinterpreted comment or tone of voice can build over several days or weeks until it reaches the need to rant or explode. These rants can go on for hours and monopolise my time and are exhausting for all. Quite often, something really small is identified through these rants, which if changed can ease things so much and so we agree that one of us will talk to school and ask if the change can be made. It could be changing the seating plan in a lesson or changing in the disabled toilet for PE as the main changing room has a gritty floor or the deodorant smell everyone uses is overwhelming and when coupled with the demands of the other sensory and social interactions in the day it leads to overload. Removing one or two lightens the load.
As my child has progressed through to secondary school, the demands from the school day, homework and friendships have become overwhelming, and masking all day exhausting. With ASC, it is not uncommon for their intellectual ability to be many years ahead of their age yet their emotional intelligence years below where they should be. This chasm of difference creates problems navigating day to day life as they overthink everything without the emotional maturity or know how to deal with social issues. This has led to significant periods of mental ill health as they try to find strategies to cope, yet they are not really coping. Many of the strategies they find are unhealthy or high risk which puts extra pressure on us as a family as we navigate these new behaviours. It comes at a time in their teenage development when they want to be more independent and fit in as they seek their ‘tribe’ to belong to. Exploring gender issues has also become part of the autistic journey as many neuro-diverse young people identify as non-binary, perceiving and interpreting the world differently.
Another area of difficulty which impacts on mental health is eating. They rarely eat during the school day and they can’t be around the family for mealtimes as the noise and interactions are too much. Often meals are eaten on their own in a different room or hours after the family has finished to avoid hearing a knife scrape on a plate, the noise of conversation or their different foods touching on the plate. Life is hard for them and it is hard for us as a family living with someone with mental ill health. School are very supportive, as are Mind Jersey, but it’s so frustrating to be waiting so long for therapeutic support from specialist practitioners when you see your child struggling to make sense of the world around them. We live for the holidays when we get our child back as they relax, laugh and reengage with us and find pleasure in life again and as a parent you try not to worry about the future.
Being a member of the Forum has helped to put this family in touch with other families going through similar difficulties and for them to know they are not alone or a lone voice. Through this shared voice the Forum has captured issues for concern and it has helped this family to feel that they playing a part in bringing about change.
The parents involved in the Forum have been part of the Government redesign workshops for mental health and wellbeing, participating in a focus group to capture the views of neuro-diverse young people. Access to Kooth online counselling service came out of this process.
The Forum would love to see a more neuro-diverse and holistic approach to supporting autistic children in Jersey where parents and carers with lived experience are seen as the experts about their children and are able to help shape the provision of services around mental health. The Forum aims to inform parent of the services being reviewed and reassure them that these services will be improved to cater more specifically for neuro-diverse children and their families in the future.