Everyone knows the saying “it takes a village” when it comes to raising children. What happens if that village isn’t really sure what autism is and what you’re going through?
Many families go through that dilemma — my family is no exception. Some of my family members weren’t sure exactly what autism was when my son was diagnosed. Many assumed that time and changes in parenting could make it go away. In many cases, these beliefs actually made it harder to parent my son the way he needs it – and I know I’m not alone.
Parents of children with autism need support, but aren’t always able to find it when those they reach out to those who don’t know the facts about autism. This is why it’s vital to educate family and eliminate any discrepancies about what autism is to engage extended their family.
Here are a few ways you can teach others about autism. These ways have worked for us!
Talk openly about it.
One of the most important things you can do is keep lines of communication open about your child’s diagnosis, even when it’s difficult. I have a hard time with this, but by facing the fact that my son is affected by autism, it has helped me accept reality. I’m learning to focus on the great strides he is making and realize there will be setback – and that things will be okay.
One key point to remember is that family members want to know and understand all the exact things you wanted to know and understand too: what autism is, how it affects your child, and how it will impact his or her life. Remember that it’s possible the only thing family members know about autism is the things they’ve seen in movies or on TV. They may also think they understand autism based on one person they’ve met with the diagnosis. But all people with autism are individuals. Make sure you explain this to your family to help them understand things better. Many people tend to think a child will “grow out of it,” especially in cases where the child doesn’t have any physical markers of a disability. While children who are affected by autism will learn how to better cope with some of their struggles, children do not grow up to be adults without autism.
Acknowledge that you are still learning, too.
Remember that as a parent, it’s okay to not know every single thing about autism. Raising a child with autism is a journey. This is a struggle for me to not know the answers to all the questions I have about my son’s future (Will he attend college? Will he make friends? Will he be able to live alone as an adult?), but I’m a work in progress. It’s hard to know how to navigate the public school system and it’s hard to decide whether to not to medicate your child. It’s hard to face the diagnosis and what it means for your child’s life. The acceptance piece of the healing process has set in for me, but I still have all of these worries and fears about my son’s future. I’m becoming more adept at discussing autism with people – I actually discussed my son with autism with some near strangers during the Baby Time class at the library that I attended this morning with my youngest son. I think opening up the conversation about autism is not only therapeutic for me, I think it helps others who are in the same boat and educates those who are unfamiliar with autism too. If that doesn’t work for you, that’s okay. Everyone’s journey is different, and everyone chooses to parent in the way they feel is best for their child. You don’t have to explain anything to anyone if you choose not to.
If you find yourself unable to answer someone’s questions or wind up with questions of your own (it’s inevitable), www.autismspeaks.org and www.autismsocietyofindiana.org both offer a wealth of information that can help break things down and make autism easier to understand.
Extend invitations to others.
For the family members who would like to be included in your child’s life, invite them to spend time with you and your child. Maybe your child is able to play on a sports team. My son is high-functioning and he played on a baseball team last spring. Family members and even his teachers came to cheer him on and he loved it! If your child doesn’t participate in any extracurricular activities, invite family to a walk for autism or a support group meeting that you’ll attend too. Support groups are good for everyone – we attend one at our local library. It gives kids with autism the chance to spend time in a place with peers like them while adults can talk with other parents who can relate to the experience of raising a child with autism.
Continue to empower yourself.
As I mentioned, attending support groups is a great way to learn more about autism. It’s always good to continue to learn more about the disorder and knowledge helps your entire family in the long run. When you first found out about the diagnosis, you probably felt a loss of control about your child’s future, and that’s normal. Continue to educate yourself by reading books about autism and parenting children who are different. I love the book Different, written by Sally Clarkson and her son, who the book is based on, Nathan Clarkson. Another helpful book is Autism Spectrum Disorders: What Every Parent Needs to Know written by Alan I. Rosenblatt and Paul S. Carbone.
If you’re trying to figure out how to explain autism to children, you’re not alone! My husband and I weren’t really sure to begin when it came to explaining autism to my child who is affected by it and his sister, who is just 19 months younger than him. We didn’t want to tell him when he was too young, but we also felt it was unfair to wait until he was old and have him upset that we never explained his differences to him. We realized we don’t have to figure it out alone – there are so many children’s books about autism that are meant to help parents just like us! One book I love is written by Pat Thomas and is called I See Things Differently: A First Look at Autism. The other is by Shaina Rudolph and Danielle Royer; it’s called All My Stripes: A Story for Children with Autism.
The other thing you can always do is advocate for your child – this will give you confidence so you no longer feel out of control. After my son’s diagnosis, I knew I had to do everything I could to help him. It really did give me a sense of purpose and helped push away a lot of the anxiety I felt upon initially hearing his diagnosis. I can remember the feelings of things spiraling out of control, and I knew I had to find away to stop that awful feeling as soon as possible. Turning into his advocate gave me just what I needed – a job that gave me some power and offered me the opportunity to better things for my son.
Every parent who is raising a child with special needs of any type is going to find themselves in the face of ignorance when the topic of their child’s diagnosis comes up. This holds very true when your child doesn’t “look” like he or she is affected by autism. This is why it’s so important as a parent to advocate for your child and part of advocating is educating others.
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