We all respond differently to information about our children's health. After learning your child has autism spectrum disorder (ASD), you might be stunned, scared, or even relieved to have answers that explain delayed verbal development, difficulty engaging with others, or repetitive behaviors. No matter what you’re feeling, you’re not alone. On MyAutismTeam, there are thousands of other parents who have been in your shoes.
You can’t figure out everything about autism at once, and you don’t need to. Taking small steps to adjust to your family's new reality can be empowering in a time of major change. According to the American Psychological Association, active coping strategies like getting organized and making a plan for supporting your child can improve mental and emotional well-being.
Create Space for Autism
It’s normal to feel out of control when you first learn your child has autism. You may have a pile of pamphlets crowding your kitchen table and a head full of questions that you forget the moment you set foot in a doctor’s office. You can begin to tame the chaos by implementing very simple organizational techniques that will help you create space for this new aspect of your life.
Put Everything in One Place
Storing all of your printed doctor’s visit summaries, pamphlets about autism, and other resources in a designated spot can help create some order and help you find information when you need it. You don’t need a fancy filing system - a kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, there is evidence that controlling clutter is associated with better moods.
Remember Your Questions
Keep a list of questions about autism for your child's healthcare provider or behavioral therapist in a dedicated notebook or on your smartphone. Jot down your questions as you think of them and bring your list to your appointments so you can remember your questions and write down the answers.
Manage Your Appointments
If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing your child's new therapy appointments. If keeping a calendar is new to you, consider using what you already have at home, such as a grocery list notepad or a piece of paper and a magnet on the fridge. You can also ask your child's therapy office about phone call or text message reminders that can help you keep on top of appointments.
If your child's doctor has prescribed any oral medications, using an old-fashioned pill organizer, paper medication tracker, or smartphone app are great ways to stay on top of doses.
Reach Out for Support
It can feel overwhelming to reach out after your son or daughter receives an autism diagnosis, but you don’t have to face the situation alone. Support from loved ones, your child's support team, and other parents of children with ASD is crucial as your family adjusts to your new normal. There are a few basic steps you can take to start building your network of support.
You may not be ready to talk about your child's diagnosis with your loved ones right away. You may also not have time or be comfortable joining an in-person parent support group. That’s ok. Connecting with members on MyAutismTeam can be a first step towards finding support. Your community on MyAutismTeam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about parenting a child with ASD or want to celebrate a victory.
Many hospitals and medical practices offer resources that extend beyond your child's medical appointments. These may include chaplaincy services, health education classes, patient liaisons or nurse navigators, on-site support groups, and referrals to other services.
Friends and Family
Sharing your child's autism diagnosis with friends and family can be hard. They may misunderstand ASD and struggle to react in a helpful way. Try to remember that everyone is doing their best with difficult news. If you’re able, let your loved ones know how they can be most helpful to you during this time, whether that’s helping with household chores or offering a listening ear.
Learn More About Autism
You might not have known much about autism before your child's diagnosis, but now you probably want to learn more. Your child's healthcare provider and therapists are great resources for information, but you may also want to do your own research. Remember to be cautious of what you read online, especially if someone is offering a quick fix or selling a cure. You can always reach out to your son's or daughter's healthcare provider or therapists if you have questions about something you’ve read.
Here are a few resources to get you started:
You never have to feel alone when you’re parenting a child with autism. Members on MyAutismTeam are always available to answer questions and offer encouragement when things get rough.
Here are some conversations from members on MyAutismTeam about facing a new diagnosis:
If you have a pressing question, you can go straight to the Q+A section. You can also read more about how to get started on MyAutismTeam.
For the parents of newly diagnosed children, what information are you seeking?
For veteran parents, what do you wish you knew when your child was first diagnosed? Share in the comments below or directly on MyAutismTeam.