This is the third in a new series of articles aimed at helping families and grandparents learn more about autism, and also support the parents of a newly diagnosed autistic child, and of course the child themselves.
But firstly, why do we use the hashtag – #mygrandchildisautistic?! – with its implication of questioning surprise?
Because, to generalise, this is the first generation of grandparents whose grand-kids are gaining autism diagnoses in larger numbers than have been seen previously. Of course, many children are diagnosed (and have been diagnosed) as autistic over the years; but the current generation of parents in their thirties and forties would not have witnessed great numbers of children gaining autism diagnoses when they, the parents, were school age, in the 1980s and 1990s. Thus, a great many (current) grandparents did not see their own generation, or their children’s generation, gaining autism diagnoses in large numbers.
Today, many more parents are gaining their own autism diagnosis as adults, after researching ASCs in their children. But, thanks to a lack of exposure to diagnosed autism, and the fact that many grandparents don’t see their grandkids daily to witness the (often subtle) signs of autism in children, there can be a lack of understanding and knowledge when parents of newly diagnosed children share the news with families and care givers.
Here, we aim to answer come commonly asked questions that grandparents and other family members may ask of their young family members.
Why is routine so important to the autistic child?
The autistic brain can feel ‘dis-ordered’ – hence the diagnostic term ‘autism spectrum disorder’ (which we acknowledge that many neurodiversity advocates do not like to use) – and this element of disorder changes day to day and occasion to occasion, and also environment to environment, for the autist. (Read our ‘What is autism’ blog HERE).
With life’s multiple elements of unpredictability, many autists find solace in structure. Each autist is different of course, with a different set of challenges, however all autistic individuals will face challenges in the fields of communication and social interaction, as well as some degree of sensory difficulty. It is when the difficulties or challenges stack up, and are not counter-acted by skill-sets to manage them, that autistic anxiety ramps up; and autistic behaviours that are problematic for the autist, and sometimes others around them, manifest. (This is why we use a set of scales in our Spectra.blog logo, e.g. to represent this ‘balance’ of challenges versus skill-sets).
Following routine means that the autist is limiting surprises, unexpected sensory challenges, or new social situations. Depending on their level of processing challenges and executive functioning difficulties, un-planned-for occurrences can de-rail the autist’s day. What most autistic individuals like, is to know what is happening, and when. Grandparents and care-givers can help this autonomy and synergy by keeping to set routines, bedtimes, nap times, meal-times, and even meal-types. Autists often experience sensory challenges that make meal-times tricky, in terms of aversions to textures and tastes of food. Sticking to plans, which may include shopping ahead for preferred brands of food for example, so they’re ‘in the cupboard’, helps keep the autist in control. It’s worth mentioning on the subject of food that many autistic children have food intolerances, stress-related digestive disturbances, or are sensitive to food additives, E-numbers and the like. Sticking to the parents’ rules about sweets and snacks will also help maintain mental and physical equilibrium for the autistic child.
All children love birthday parties, fun social occasions and the like, don’t they? If the child is seemingly anxious and grumpy at such an occasion, they’re probably just tired, aren’t they?
Tiredness certainly affects us all, no matter what our age! But let’s use a scenario… imagine going to a networking meeting (or family wedding, for example), in a foreign country, with people, many of whom you like very much, who are speaking a language you don’t know well. You have perhaps learned some key phrases, and have a guidebook (or digital app/translation device). But often, when you’re conversing, despite the occasion being fun, you miss what’s been said, a quickly-told joke goes over your head, or you spend so long looking up a translation that you forget what the other person’s intention was. By the end of the occasion, your brain has worked far harder than usual.
This is what EVERY conversation may be like for an autistic child. They are not just conversing – they’re processing, and trying to navigate social rules and body language that confuse them too. Plus, at an occasion or party, there’s very likely to be background music or chatter thrown into the sensory melting pot. This can result in a ‘social hangover’, whereby the autist NEEDS downtime from all conversation and interaction (and probably sensory stimulation) until they recover. (Otherwise autistic shutdown may ensue.)
Every further conversation and interaction once their ‘social bandwidth’ has been used up is exhausting the autist further. So, parties, visits from relatives, play-dates, Christmas (or any other religious or seasonal occasion) meals and gatherings, and anything that’s socially taxing, especially with people the autist doesn’t see frequently, whilst fun, can be catastrophically draining. It’s nothing like simply being tired. Grandparents and caregivers can help by factoring in lots of downtime, quiet periods, possibly ‘screen time’ if this is what the parents agree with, and any sensory tools that help reduce anxiety, like a weighted blanket or set of noise-cancelling earphones. (It’s worth mentioning also that many autistic children are not fans of being videoed or photographed, so families should ideally ask the child first, before filming or snapping away!)
You can read the first feature in this #mygrandchildisautistic?! series, including the following questions, HERE –
*Why does he / she need a label?
*All children his / her age do (certain autistic behaviours) – it doesn’t make them autistic…that’s normal isn’t it?
*It seems like the parents of the child let them dictate a lot, in terms of washing, bathing, food choices, and the clothes they wear. Why is this?
You can read the second feature in this #mygrandchildisautistic?! series, including the following questions, HERE –
*Surely behaviours like meltdowns are just like tantrums – how can we tell them apart?
*If the school and the wider family don’t see any autistic behaviours in the child, how can he / she be autistic?
Read our ‘Foundation Posts’ HERE. And check out our post on discovering ‘Aspie strengths’ HERE.
Please note that as we always say in each blog post, here at Spectra.blog, we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences.
Also published on Medium.