Jo Griffin of www.affinityhub.uk and Felicity Rosslyn discuss how parents can best support their child on the autism spectrum
- JG: How parents receive a diagnosis for their child is key. Parents sometimes report feeling left high and dry with no idea of what to do next. What advice would you give parents in the early days?
FR: While for some parents the diagnosis can feel devastating for many the diagnosis is not so much a surprise as a relief—they’ve always known the child is ‘different’ and they’ve suffered from being blamed for their child’s ‘bad behaviour’ for a long time.
But the questions remain, what to do next when the agreed diagnosis is an Autistic Spectrum Disorder (ASD. I strongly recommend the autism.org.uk website as a central hub for information and contacts.
The child needs to ‘find their tribe’, whether in school or on the internet – and so do the parents.
- JG: It can feel very de-skilling, as a parent, to not understand your child or know what they need. How do you support parents who are feeling like this?
FR: I tell them that understanding autism from the inside is a bit like a journey abroad.
You have to face the fact that you don’t understand the language or the customs very well, and that the foreigners are busy about their business and won’t take time to explain anything.
At the same time, exploring somewhere new and different can be interesting and exciting and you’ll gain all sorts of new skills and experiences along the way.
In communicating with someone on the spectrum it is wise to be cautious about hidden assumptions, yours and theirs, and to focus on information rather than feelings.
There is a ‘guide for visitors’ by a 13-year old boy, Freaks, Geeks and Asperger Syndrome (Luke Jackson) which is revelatory about not only the difficulties of his ASD experience, but the joys.
It taught me a lot. He has subsequently written a book about ASD adolescence.
- JG: In my own experience, society and the reaction of others can make, or break, my day (i.e. if my son is displaying signs of sensory overload in public). Do you have any tips on how parents can manage this and support their own emotional well-being in the fallout?
FR: I think public awareness has moved on to the point where you can say ‘my child is autistic’ and be understood.
Obviously, the negativity may still be there, but you can take pride in standing up for your child and know that there’s an increasing body of opinion on your side (which has led to innovations like ‘quiet shopping’ hours and autism-friendly cinema).
The National Autistic Society’s website has short and powerful films representing autistic feelings from the inside (‘Too Much Information’) which could help you understand why overload will lead to meltdowns.
Above all, you need friends who are in the same boat!
Look out for local self-help groups, go online, and reach out to other parents whose children show the same behaviour.
Your child may already have found a friend at school who they recognise – that child’s family may become your support network.
- JG: Parenting and childhood are often idealised in the Western world and of course the reality, for many parents, often falls short of these dreams. Images that we receive from adverts, TV and social media rarely tell the whole story of people’s reality. Psychologists talk of cognitive dissonance, the gap between the ideal and the real and the larger the gap the more someone can feel a sense of dissatisfaction or that they have in some way failed. Are there strategies that parents can use to adjust their expectations to something more realistic?
FR: I think children on the spectrum can be a total antidote to the idealisation of childhood - and that is what I have learned to enjoy about them.
They are factual, truth-telling and direct.
They make us question our ‘normal’ because from their point of view social behaviour is a charade and not worth the effort.
They can be very funny, both accidentally and deliberately, because they see so much absurdity around them – and that can be a gift to those of us who take life too seriously and forget to live in the here and now.
Of course, there is a huge spectrum of abilities and challenges, as well as individual hopes and expectations for parents.
Taking care of yourself while finding your feet in your new situation is an important part of the process.
- JG: What messages would you pass onto parents about the future with their child?
FR: I think ASD is best viewed as developmental delay, sometimes in learning, and always in social understanding.
As a rough guide, I get parents to halve their child’s age to get a sense of their social abilities, so an 8-year-old would be 4 in terms of self-control and awareness of others, and a 16-year-old would only be 8, a 20-year-old only 10, and so on.
The message I want to convey is that progress is always being made, but if you compare your child to their peer group you will frighten yourself and pile extra pressure on the child themselves.
The proper comparison is with other children on the spectrum, and with the child’s previous achievements: all glimpses of improvement are to be celebrated.
There’s a new book ‘Been There, Done That, Try This!’ written by mature people on the spectrum for younger ones, where you can eavesdrop on how grownups look back on their years of slow development and see how far they eventually travel.
The difference between these (often very successful) adults and your child is the intervening years of experience.
These adults remember how they learned that other people had feelings, and what to do about it.
They remember learning how to modify their language and tone of voice when socialising. They remember learning to limit the amount of time spent talking about their latest enthusiasm, and how to capitalise on their specialisms when it came to getting employed.
They have done all this so successfully that many of them pass for neurotypical, and they are the only people who know how hard they have worked to get there.
One other side benefit of thinking about the timeline of ASD development is that it throws new light on the behaviour of other members of the family.
The diagnosis of a child is often the trigger for recognising ASD in parents and grandparents also – and the fact that they have survived and lived full lives without diagnosis is all the evidence we need that developmental delay is not final.
Jo Griffin is a Chartered Counselling Psychologist and Founder of www.affinityhub.uk which signposts parents of disabled children to emotional support.
Felicity Rosslyn is a family counsellor with a special interest in autism. Her website is http://www.leicesterfamilytherapy.co.uk