The loneliness of parenting a child with autism
Our mission is to support every parent and child through the tough times, whatever their unique situation. For Jenny*, discovering that her 11-year old son Jack* had autism changed her world. But with the help of Spurgeons Counselling Services, provided by Fegans, and other parents, she is finding her way forward.
Children with autism may not recognise social cues, body language and feelings. They may seek security in strict routines. They may over- or under-react to sensory stimulation. Issues around some or all of these can trigger a meltdown, shutdown or extreme anxiety.
‘We first noticed problems when Jack started school,’ Jenny recalls. ‘He didn’t want to wear a uniform or go into the classroom. Some days it takes three hours to get him through the door, although after that the teachers say he’s OK.
‘But at home he’ll suddenly have a meltdown and throw things. He’s bright and confident, so it’s been hard to tell if he’s just misbehaving. That’s one reason it’s been so hard to get a diagnosis.
‘The consultant we finally saw in February said we wouldn’t get a formal diagnosis before he started secondary school. That’s next week. I’m dreading it – the uniform anxiety again. His primary school let him wear joggers and a t-shirt, the secondary won’t be so flexible.’
Jenny pauses, choking back tears. ‘I know we’re going to have to have that battle and it’s just going to be so hard, for both of us.
‘We’ve tried every kind of parenting. None of it works. It’s exhausting, it’s relentless. You end up in your own world, trying to figure out how best to support him whilst keeping up with work, caring for the other kids and your husband. It cuts you off from your friends and family – our own parents think he’s just playing up. I can feel like I’m to blame.’
Through the primary school, we offered Jack counselling; Jenny attended our 8 week Early Bird Plus course for parents of children with autism, led by Parent Support Workers Rebecca Leal and Nicola Baldwin. Both trained by the National Autistic Society, they are themselves parents of children with autism.
It gives them a deep empathy with the other parents.
Rebecca says, ‘Some parents have been given a diagnosis and perhaps a leaflet, and left to work out the rest themselves. Our group sessions give them the facts and the vital support they may be missing, which they can also get between times via our WhatsApp group.
‘The parents so often put themselves second. We encourage them to look after themselves as well, to step away and take a deep breath when it all gets too much. We can also reassure them that it won’t always be this hard. With the right support, things do get easier.’
Jenny says, ‘It’s so good to be with other parents of children with autism, including Rebecca and Nicola, who are sympathetic, helpful and open about their particular challenges. I don’t feel so alone. We can share fresh approaches to try. On a bad day, it’s such a relief to know there are other people you can talk to who will really understand.’
*Name changed to protect identity.
Spurgeons counsellors work one to one with children in our centres, online and in primary and secondary schools throughout the South East.
We also provide parenting support for families with significant challenges such as supporting those with additional needs. We deliver much of this work through five town-wide family hubs in partnership with schools and our own preschool family hubs.
Learn more about our Counselling services