Learning that your child has autism spectrum disorder (ASD) is difficult, but it’s also the first step on your journey towards helping him. Soon after diagnosis you’ll probably have many questions – and although there are no simple answers, it helps to know what to expect.
Your child has just been diagnosed with autism spectrum disorder: what to expect
With consistent, evidence-based therapies, you’re likely to see improvement in your child’s behaviour, language and social interactions. But every child on the autism spectrum behaves differently, and every child with autism spectrum disorder (ASD) will respond to interventions and therapy differently too.
Early, intensive, family-based intervention is the best way to support your child’s development and wellbeing. The best treatment approaches are those that target all areas of your child’s development, social and communication skills, and behaviour. They should be adapted to your child’s strengths and weaknesses and your family’s priorities and home situation.
What works for one child and family might not work for another. Many parents find they have to try a few different types of intervention to find what works best for their child and their family.
Children who are only mildly to moderately affected by ASD might improve enough through early intervention that they no longer meet the criteria for ASD when they’re older. This doesn’t mean they no longer have ASD, but they have learned the skills that come naturally to other children – for example, making eye contact or remembering to talk about other people’s interests and not just their own.
You might hear stories about ASD treatments that lead to ‘recovery’ or a ‘miracle cure’. Although it’s natural to feel hopeful about therapies, ASD is currently a lifelong disorder and so far there’s no cure.
Parent stories: life with a child with autism spectrum disorder
Other parents’ stories can be helpful and comforting. They can offer glimpses into what the future with a child with autism spectrum disorder (ASD) can be like.
The following stories come from Australian parents a few years after their child was diagnosed with ASD, and are reprinted from the Australian autism handbook. You might recognise your situation in some of them, whereas others might be very different.
by Benison O’Reilly
‘I’d like to let you in on a couple of secrets. Firstly, you might find that having a child with a disability uncovers strengths and abilities in you that you never knew you had. Having Joe has made me a kinder and wiser person. I no longer sweat on the small stuff and, if anything, my main fault is that I’ve become intolerant of people who fuss about trivialities.
‘Secondly, in a society that seems to expect all our children to be high achievers, it’s easy to imagine that a disabled child might be harder to love. Instead I’ve found the reverse to be true. Watching our little fellow struggle and overcome all the challenges thrown his way has made him so much more precious in our eyes. We despair at his occasional setbacks and triumph at his successes.
’I expect you’ll find the same and will love your little person more than you could ever have imagined.’
‘Ineka at age 6’
by Therese Potma
‘Ineka’s first year at school has far outweighed our expectations. She attends a special education school where the teacher-student ratio is one to five. We are so deeply pleased to watch her academic skills progress like a normal developing child. She’s reading, writing and – to our disbelief – even doing well at maths!
‘Ineka still finds it hard socially with her peers in the playground, but is always excited to be in their company. She doesn’t talk about classmates at school unless I ask her a specific question, and even then her answers are mostly very factual: “Jenny has earrings”, “John played basketball”, or “Charlie is a naughty boy”.
’Emotional attachments and the desire to be with other children are definitely missing. The strange thing for Ineka is that she has no problem forming emotional connections with adults. Maybe we’re a little more predictable?
‘Up until now our lives have been anything but normal. For some time autism has been our focus – not by choice, but out of necessity to understand and help our little girl. After lots of tears, continual stress and endless hours of hard work on intensive early intervention, our lives have turned around, and we can now function as a relatively normal family. I’ve found myself once again dreaming about the possibilities of Ineka’s future.’
by Holly Priddis
‘All of my four beautiful children are a gift to us, but Cooper changed me. He’s taught me so much more than I ever could have expected or will ever be able to teach him. He’s opened my eyes to true human spirit, whether it be genuine and kind or selfish and cruel. He’s taught me to fight, to stand up for what I believe in and to have an opinion.
I have so much grief for what he will never experience, but I have so much joy from his words, his love. I will fight for him, and all the other children with autism, and together we can give these children the opportunity to live to their true potential and inspire us all.’
‘Tom at 11’
by Seana Smith
‘Tom is 11 now and leads a pretty normal life. He goes to school, he plays rugby and cricket with local teams, he swims and cycles, he fights with his brother.
‘On the other hand, he has very significant learning issues, especially in maths. His language is delayed and disordered and he’s a terribly innocent boy, quite different from his peers. Tom’s friendships are genuine, but not the same as those of other boys at 11.
’There are occasional dark times too – he can totally lose focus, stim a lot [exhibit repetitive self-stimulating behaviour] and become obsessive and aggressive. These times still give us a terrible shock.
‘But Tom is a very able boy, much more abled than disabled. We hope as he enters his teenage years that this can be maintained, and that his life and that of his brothers and sister – and his rapidly ageing parents – can be as “normal” as possible.’
‘Alex at 10 and Jack at 7’
by Elena Barnes
‘Now Alex is 10 and has mild ASD. He learns well at school and is quite smart in some areas. He can speak well, but he’s just not into conversation and lacks many social skills. He’s fantastic at Nintendo games though, and could beat anyone! He’s also fantastic at drawing.
‘Jack is now seven, and although he’s had the best early intervention, his ASD is still quite severe. He has no language and is still very hard work. It’s like having a toddler, as he always has to be watched. He’s messy, raids the fridge and cupboards, and has to be helped with all of his living skills. He’s now at an ABA [applied behaviour analysis] school and we’re hoping for a rise in his abilities. Every improvement counts.
‘If you were still trying to have a normal life with these circumstances, you’d be disappointed every day. Life isn’t easy, but we enjoy our boys and they do give us a lot of love. We adore all of them. My husband and I didn’t ask for this – no-one does – but this is what we got, and we have no choice but to make the best of our situation. The boys love swimming, so we have a great solar heated pool! Life will be a challenge, but one we keep finding the strength to face.’
‘Life with Harry’
by Jennifer Couper
‘A friend once said it will be two steps forward, one step back, and this has been very true for us. We’ve learned to savour enthusiasm from the good weeks and to keep going during the hard ones.
‘Harry at 11 is still learning a lot of new language and reading our expressions more easily. His eye contact is spontaneous and for a purpose, rather than in response to that unhelpful command people love to use, “Look at me”. He’s also showing a lot more cunning – he can be quite devious and lie to find a way to trick us, great developments for an autistic child. And we’re keeping going.’