When a child is diagnosed with autism, the support of family and friends means a lot. If someone you care about has a child with autism, here’s 8 things you can do to help.
Having a child with a disability like autism is not easy.
When children are first diagnosed with this lifelong challenge, parents are often caught up in a whirlwind of grief and shock and they may respond in ways that family, friends and neighbours do not expect.
In those early stages of trying to find services, doctors, therapy and schools for their child, many parents find that their relationships with the people who used to know them well change. Some old friends are as strong as a rock and do everything they can to help and support the child, regardless of the diagnosis. Others, not sure what to do, step back and occasionally abandon the relationship altogether, leaving their friend, the parent of a newly diagnosed special needs kids, even more isolated.
So what could you do if this happened to a family you know?
Here are 8 things to keep in mind…
1. Be There
Never underestimate the importance of a simple phone call, email or coffee date. Your friend or family member may seem preoccupied with their child’s disability, but it’s also likely that they may also need someone to listen and ask how they are going. As a friend, you may not understand everything about autism, but just like you, mums and dads who have kids with autism often want to talk about their kids. You don’t have to know a lot about the condition, but sharing a coffee and ensuring that your friend has your support can mean a lot to families who feel acutely ‘different’ and for whom the whole world may have suddenly changed.
2. Be willing to talk about it
Should you talk about autism or avoid the ‘A Word’ altogether? The answer to this dilemma is “It depends.” There are some parents who are reluctant to discuss their child’s diagnosis for fear that it will ‘label ‘their child. There are others who are more than happy to talk about it. Perhaps the best thing is to let your friend raise the topic of autism. You can then ask about how the child is going. Because parents of special needs kids never take progress for granted, they are often proud of their children’s smallest accomplishments. When you show that you care and that you share their pleasure in their child’s achievement, you could make a real difference to that friend’s day.
3. Choose your words wisely
It’s usually not helpful to say things like ‘Special needs need special parents…that’s why he was given to you.’ It doesn’t take the hurt away or make it easier to accept a diagnosis. Other statements like ‘he doesn’t look autistic’ are probably not that sensitive either! Kids with autism have a wide range of abilities and they are all very different. Many parents who have a child diagnosed with autism have been on the receiving end of disapproving looks in supermarkets or ill-considered comments from relatives about the need for ‘better discipline’. They share their lives with therapists and doctors and ‘advice’ from relative strangers is a big part of their lives. Make sure that any you give is caring and can’t be construed as being critical!
4. Protect their privacy
Regardless of how much your friend or family member talks with you about their child, it’s important to keep these conversations confidential. Just because they open up to you does not mean that their child’s difficulties should be shared with others. If your friend has chosen not to disclose their child’s diagnosis at school, pre-school or to other members of the family, your confidentiality is even more important.
5. Be sensitive about the future
It’s hard for parents of special needs kids to predict where their child’s future will take them. For some, the years ahead could be a frightening unknown. They may not know the answers to questions like “Is there a cure?”, “Will he grow out of it?” or “Will he go to school?” An added worry could be what would happen to the child if something happened to his parents. If your friend wants to talk about it, the discussion about a disables child’s future is worth having. Your friend might just need a sounding board to help them get their heads around possibilities like special schooling, independent living, or the possibility that the child may live with the family for the rest of their lives. You don’t have to have the answers, but you can help by simply caring.
6. Encourage play
Autism isn’t contagious, however you might be surprised to know that many parents of special needs kids comment that play date invitations often dry up after a child is diagnosed with a disability. Children with autism often benefit greatly from spending social time with ‘neuro-typical’ children. They have difficulty creating and maintaining friendships, engaging in conversation and working within a group of children, so you can help by inviting your friend’s child over for a play and by encouraging your kids to be a good friend. Even if the play date is not typical of times you spend with other children, it will offer a child with autism an opportunity to learn typical social behaviours and skills from your children. And there are benefits for your kids too, as these experiences may provide lessons in acceptance and tolerance of people who are different from them.
7. Give the gift of respite
When you have a child with autism, leaving that child in the care of another person is usually not as simple as engaging a 14 year old neighbour or cousin to babysit while you go out for dinner or to see a movie. The things that other families take for granted, like going on a holiday or to after school care are also not so easy. Whether your friend’s child is a toddler, adolescent or adult with autism, respite could be a complicated issue for her family. Your friend could be one of the many parents of children with disabilities who are overwhelmed with daily special needs responsibilities. In addition to their social and behavioural challenges, some kids with autism do not sleep well at night, and this adds even more pressure for exhausted families. Your offer to provide a brief break could be a much appreciated gesture. The help of a trusted friend or family member who knows how to interact with the child and who is willing to spend a little time in the child’s home to ensure that the child stays in a familiar environment could mean a lot to parents who get very little opportunity to do something for themselves.
8. Be selective about the information you share
Often the issue of autism pops up in the news and you might be tempted to cut out an article about a ‘cure’ or a treatment and send it to your friend. If your friend is open to discussing autism, or if the article is for a treatment that they have spoken with you about, sending something you have read, a website link or a newsletter can be a great way to show you care. However, parents don’t always agree about autism treatments or causes and your friend may react strongly to studies, articles and other resources, so be sensitive about what you share.
Until you walk a mile in her shoes, you will never know what is like for your friend or family member to have a child with a disability.
As the old saying reminds us, “There but for the grace of God go us all.”
Making the choice to support a family affected by autism is one of the greatest gifts you can give.
© 2015 Sonja Walker
Kids First Children’s Services
Know a family that needs help?
Kids First specialises in supporting children with autism and their families.
Our speech pathologists, teachers, occupational therapists and psychologists have extensive disability experience and we provide Early Intervention to children who are eligible for Helping Children with Autism funding. Find out more here…
We also offer a free support group called Care & Connect for parents of children with autism. Care & Connect meets monthly in Brookvale. Find out more here…
For more information about how we help northern beaches children who have autism, contact Kids First on (02) 9938 5419