NEW REALITIES AFTER ASD DIAGNOSIS–PART 2
In Part 1, you read about autism spectrum disorder (ASD), what it is and what an ASD diagnosis means. Now learn some of the many positive steps you can take for yourself, your family and your child with ASD.
First steps you can take
Learn. Do some research about ASD to anticipate what signs and symptoms to look for as your child develops—and how to react if they occur. This gives you added confidence and focus. Ask the clinician who provided the diagnosis to give suggestions for high-quality and trustworthy information.
Observe and empathize. Since young children can’t always describe their experiences accurately, pay close attention to their behaviors. Watch for subtle cues that help you understand the experience from your child’s perspective. It may help to write down any patterns you notice—maybe use a journal you can refer to.
Build a team. Start assembling resources you can rely on as you consider decisions about your child’s therapy and education. The team might include professionals in the medical, therapeutic, education and even legal fields. Look for experience specifically in the autism community.
Heads-up. To the adults your child interacts with, it may not be clear that your previously undiagnosed child is on the spectrum. Consider sharing the diagnosis so they can adjust their expectations and behavior. That said, if someone stares at your child or makes a judgmental comment about their behavior when you are out in public (such as at a grocery store or restaurant), feel free to ignore them. You can decide with whom and when you share your child’s diagnosis. Provide space and patience for others—we don't know their struggles just as they don't know ours.
Self-care
Autism isn’t just about your child. Caregivers, including family members, need attention and downtime. Consider these recommendations from people who have navigated the waters you’re in now.
Prioritize your own needs. Parenting a child with ASD is hard, and it’s not something you should try to do without help. So, take your own needs seriously from the get-go. Self-care places you in a better position to meet your child’s needs.
Don’t delay your child’s therapy and intervention. The sooner you implement a treatment program, including individualized activities that strengthen your child’s progress, the sooner you can set up your own support system.
Request logistical help. Don't hesitate to ask friends, neighbors, family members and others for occasional support. Whether it takes the form of errands, cooking, babysitting or other chores, you’ll find people who are eager to help but don’t yet know how. Don’t be shy about this.
Research and join support groups. You’ll meet and compare notes with other parents of kids with ASD. The experience can give you a reliable source of encouragement and a setting where you can share your own fears and emotions freely.
Take frequent breaks. As you would with any activity that requires focus, disengage occasionally. Give yourself permission to go out on a date with your spouse/partner or meet up with friends. This isn't selfish behavior, but self-care. Walk the dog, take a quick nap, go for a stroll, or even visit the gym. Your concentration will improve, and so will your outlook.
Trust your instincts. You know your child’s quirks better than anyone. You may need to push back against well-meaning advice. If it feels wrong for your child, listen to your instincts. If a treatment or method is advertised to offer a “cure” or quick fix, this should ring some alarm bells, as autism is a complex neurodevelopmental disorder.
Celebrate accomplishments. Find the joy in your child’s successes, no matter how seemingly insignificant, without comparing them to the successes of others. Love your child for who they are. Your child can and will continue to grow and develop. Taking note of each incremental step can be joyful and awe-inspiring.
Evaluate what you read and hear
There’s a lot of misinformation out there, including sweeping claims about ASD. Maintain a healthy skepticism—especially if you don’t already know and trust the source. For example, you may encounter incorrect assertions like these:
People with ASD are all intellectually disabled: Not necessarily. ASD is a neurodevelopmental condition. Many have normal IQs or higher.
People with ASD can’t talk: Not necessarily. Some children with ASD develop speech later than their peers or might speak in an unusual style.
People with ASD don’t experience normal emotions: Wrong. They have a full range of emotions but may not have the ability to express them in familiar ways.
ASD is caused by childhood vaccinations: There is no reliable scientific evidence that vaccinations cause ASD. However, there is reliable scientific evidence that failing to vaccinate a child has led to a rise in preventable diseases.
Long-term strategies
As the newness of your child’s diagnosis fades, you’ll start settling into a routine. Not just the day-to-day logistics, but also an emotional routine. You may still encounter negative emotions even after you think you’ve developed a positive outlook. Consider these tips to stay on track:
Remain undaunted. There’s a lot of uncertainty about ASD, which can shake your confidence. As your child’s fiercest advocate, arm yourself with the facts and a robust hand-picked support team. You’ve got this.
Count your blessings. Your child is the same baby you fell in love with, and they'll continue to bring you joy.
Short-circuit the blame game. Despite your best efforts, you may catch yourself occasionally, perhaps subconsciously, wondering what you did wrong. Remember there’s nothing you did—or failed to do—to cause your child to have ASD. Repeat as often and as forcefully as necessary.
Participate with the ASD community. You’ll draw strength from more experienced parents of ASD kids; other parents with less experience will draw strength from you. We all help each other.
Share freely. Include family members in as many activities as possible. Siblings and extended family members can be a great support as they share a role in caring for your child with ASD. Consider sharing details about your child’s ASD diagnosis with siblings in an age-appropriate way.
Dream differently. Adjust your expectations for your child in ways that align with what’s possible. In your child’s eyes, a victory is still a victory, and that’s always worth celebrating. And hold this thought in the back of your mind: Like all kids, your child with ASD will find ways to surprise and delight you.
Hope Haven serves children with all kinds of challenges and disabilities, including lots of kids with varying forms of ASD. If you’re not already familiar with our programs, including the evaluation and therapy services we offer, call us at 904-346-5100 to schedule a tour and for more information.
For basic facts about ASD and what an ASD diagnosis means, read New realities after ASD diagnosis–Part 1