This is the first 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) with autism spectrum conditions (ASCs) 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 spectrum 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 does he / she need a label?
This is a good question, and some people and clinicians will argue that labels (and becoming embedded in a diagnostic system), are detrimental. However, we believe that diagnoses of autism spectrum conditions / disorders offer a framework for support, understanding and services for the child. Diagnosis helps family members and educators understand behaviours, and potentially unlocks educational support for the autistic child. Here’s some food for thought: if a child who is visually impaired wears glasses, they aren’t labelled on a daily basis as ‘visually impaired’ – it is just part of them and their persona. Yes, it may make them stand out as seeing things differently, but it is just a diagnosis, and wearing glasses helps them function more easily in day to day life. Autism diagnoses have parallels. (Read our ‘What is autism’ blog HERE).
What’s causing this current epidemic of autism diagnoses?
There’s no epidemic – a percentage of the population has always been autistic. There’s just more awareness and clinical understanding of neurodiversity around now.
(And thank goodness – not so many years ago, people with neurodivergence were cruelly labelled with terms such as ‘feeble minded’.)
However, we can see why some people would raise concerns about the high levels of autism diagnoses seen now, when compared to previous generations. Rest assured though that there’s no epidemic, to use this term.
So – he/she (insert relevant ASC trait!) doesn’t like hair-washes; appears shy sometimes; struggles with maintaining friendships; gets upset with loud noises/busy environments.. etc). All children his / her age do that – it doesn’t make them autistic… that’s normal isn’t it?
That’s correct, and an autistic child behaves in ways that are normal because they’re normal too. The key for families is to understand the amount of times a behaviour occurs, and understand the frequency, and any patterns that are seen. Autistic children often display all the usual behaviours seen in their peers but they may be amplified. This is why an experienced clinician (or team) performs an in-depth assessment, as the signs of ASC (or autism Spectrum Disorder / ASD) are potentially complex, and can be masked or covered up. No-one needs family members (or friends/associates) attempting to diagnose a child as neurotypical or neurodiverse. That’s what the experts are for!
Finding out the child’s own individual autistic profile – what makes them ‘tick’, what causes anxiety, what relaxes them, etc – will help develop an understanding of their condition. (You can read an adult’s perspective on the ‘autistic profile’ HERE – it describes the different facets of one person’s autism; so-called ‘green’ or ‘neutral’ days, feeling relatively neurotypical; ‘amber’ or ‘fast brain’ days when the individual’s neurons are firing super-fast; and ‘red’ or ‘slow brain’ days, when everything is a little more challenging, sensory overload is abundant, and the brain feels over-worked. This individual’s experience may help give a picture to families of how autism behaviours and behavioural signs change, dependant on the environment, and the challenges facing the autist, from a social/sensory point of view.)
It seems like the parents of the child let the youngster dictate a lot, in terms of washing, bathing, food choices, and the clothes they wear. Why is this?
The above choices relate to sensory processing issues, as autists often experience sound, touch, smell, taste and sight differently to neurotypical individuals. Many parents of autistic children make daily compromises on aspects like nail-trimming, baths, hair-washes and clothing to reduce anxiety for the child. Put simply, exerting familial authority ‘just because’ it’s judged that a bath is required nightly, or that a jumper should be worn as it’s cold outside (for example), is rarely worth the battle. It’s worthwhile working out the child’s sensory needs (e.g. some autists are under stimulated in a sensory way, called hyposensitive, while some are more over stimulated, called hypersensitive. Many autists experience both.). Some children for example may benefit from black-out blinds in a bedroom that they stay in, or may prefer their bedding to be made of a certain material. Letting the child listen to music using headphones is sometimes a good ‘rebalancer’ or tool to recalibrate, although this does depend on the child and their sensory needs. Ascertaining the autist’s preferences will make everyone’s life easier, and more enjoyable!
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?
Please also visit a further third BLOG in the series #mygrandchildisautistic?! To read answers to these questions –
*Why is routine so important to 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?
Please note that as we always say in each blog post, here at Spectra.blog, we don’t claim to be experts about Autism Spectrum Disorders/Conditions; the information we post here is based purely on our own exposure and experiences. We do not claim to be experts on any form of autism.
Also published on Medium.