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Following the recent worldwide outbreak of COVID-19, the UK is now over three weeks into a period of lockdown, self-isolation, and social distancing imposed by the UK Government. A move that’s broadly in line with many countries across the globe. In that time I’ve been in touch directly and indirectly (but always at a distance) via social media, Zoom, Skype and other means, in order to connect with autistic people and their families, as well as fellow professionals concerned about how someone with autism, and their family, is likely to deal with the situation.
What are the challenges? Are there things that people with autism might find a little easier than most, and what tips and advice can we share as a community?
In considering these questions I had a closer look at two books, each published by Jessica Kingsley Publishers: The Little Book of Autism FAQs by Margaret Anne Suggs; and the other is Something Bad Happened by Kara McHale.
One thought I wanted to begin with was about people who had received a recent diagnosis, either for themselves or for their relative, and who have perhaps found themselves with a sense of nothing happening. They may have concerns, for example, that support and help would have been put in place, following their diagnosis, had the public health crisis not happened.
It’s important for people to know therefore that even in normal times, a diagnosis of autism spectrum disorder (ASD) isn’t necessarily followed by immediate input from services.
There are several reasons for this. First the stark reality is that our systems are not well set up to immediately help the increasing numbers of newly diagnosed children and adults, even at the best of times. Second however, for the services that are set up, there are some clear recommendations about how to proceed post-diagnosis, and these take time to proceed.
For health services there are nationwide guidelines, issued by the National Institute for Health and Care Excellence (NICE) in England, Wales and Northern Ireland and Scottish Intercollegiate Guidelines Network (SIGN) in Scotland, who recommend a set of planned guidelines for how to identify and respond to a diagnosis of ASD. All of these things remain in place during the public health crisis.
There is also significant legislation and associated guidance in place which sets out the legal entitlements of someone with an ASD diagnosis in terms of health, education and social care. Again, with some caveats – that are set out in emergency legislation the guidelines remain the same.
The processes by which educational needs and disability rights are identified and provided for is discussed by various legal experts including Steve Broach in his book (co-authored with Luke Clements): Disabled Children: A Legal Handbook (3rd ed.) and by Melinda Nettleton and John Friel in their book Special Needs and Legal Entitlement. The Special Needs Jungle also provides useful information in particular about how current events are impacting on education.
The point about much of this post-diagnostic guidance is that in the first instance little if any of it requires face-to-face contact. So long as people know where to start, much of the initial preparation is a paper exercise. There is no reason, therefore, why initial moves cannot be made to access relevant information and set the ball rolling during lockdown. See a list of possible contacts and references below.
In thinking about what autistic people and their families might do in the immediate weeks and months I found The Little Book of Autism FAQs to be a very useful resource.
The book discusses issues such as:
- How to talk to the newly diagnosed child or adult about what autism is
- Whether, how and when a parent might tell their child about a diagnosis
- What to say to others
- What to do as a parent (or a newly diagnosed person) if you are sad and overwhelmed by the diagnosis and its implications
In order to answer these questions, the author went to autistic people themselves, and asked them. The overriding message, without exception, whether coming from an adult or a child was that autism was about difference and not necessarily about disability. There was also agreement that the earlier you tell your child, the better, but the optimum time to give a bit more detail was thought to be at about nine years. Not one of the respondents said they wished they had been told about their diagnosis later than they had. Most people who had been told in adulthood, said they wished that they had known earlier.
‘What to say to others’ included advice on how to communicate positively and factually to people who perhaps had previous misconceptions about autism and who maybe experienced things about the autistic person that they hadn’t understood.
The author suggests that after a child is diagnosed, the child or their parent might want to ask an autism advocate to go into school to explain to the other children and teachers about what autism means (and what it doesn’t mean). In all instances, communication, clarity, matter-of-fact information and positive but realistic discussion was, for everyone, a key feature.
Advice for those feeling overwhelmed and sad focussed on the positive aspects of autism. The relief of finally ‘knowing’, the sense of new beginnings and the preparedness that the knowledge brought.
In addition to these themes there are plenty of resources listed and very useful tips and practical advice that are accessible to almost everyone. I would definitely recommend the book – particularly for children and younger adults diagnosed recently.
In terms of our current lockdown I found Something Bad Happened to be really useful. Ideas from the book need a little adaptation in part, as it tends to refer more to a one-off, far away event that children (or adults) with autism might hear about in the news and feel overwhelmed and uncertain about.
As far as current circumstances go, things are far from distant and there is a sense that doom and gloom could easily surround us, much of the time. The general kind of practical advice that the book offers won’t come as any great surprise – and applies to us all.
Try to avoid an over-focus on detailed and repeated news programmes. For adults who have a child with autism the advice is to choose your own news time, absent from the child, and stick to it. It’s important then to act as a filter for the news to your children, again at pre-agreed times. By all means answer questions as they arise where appropriate, but try to have some COVID-free time as well.
Of course, much of this depends on the child’s age, and parents know their own children better than anyone, but in general the message is to take care, be selective, only convey what you are able to understand and explain, and try to protect your child from witnessing too much of your own concern and helplessness. Nothing frightens a child much more than a worried and helpless parent.
Children with ASD are particularly vulnerable to over-focusing on factual information. For some autistic children, numbers, dates, and (for older children and adults) graphs and tables may be an appealing way of processing information. Try to use numbers in a positive way.
Explain that things that are in the news, are in the news because they don’t happen to most people. Put the numbers in context. In fact sometimes explaining things to an over-focussed child will help the parent get back to some sensible thinking about real vs perceived risk.
One of the things we’ll be doing at BeginningwithA in the next few weeks is continuing our pre-diagnostic screening service.We are also planning to do a large part of our full diagnostic assessments via Zoom or Skype. Full assessments will then be completed when we are able to meet up with people face-to-face.
We are also very busy completing the development of our award winning ADOS-2 and ADI-R training courses, after making them available fully online. This is an exciting development that has been in the pipeline for some time, but COVID19 has given us the impetus (and the time) to complete the development. Our first course is due to be delivered to Caudwell Children staff between 20th–23rd April.
And a final word of advice for COVID 19 times. As always, look to the helpers. Tell your children about the people who are looking after us all. Take them into the street every Thursday at 8pm. To clap and sing. Smile.
Image credit: Freepik
Dr Carol Stott is a Chartered Psychologist and Chartered Scientist and a member of the British Psychological Society.
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