So you just got the word: your child has been diagnosed with autism. Whether this comes as a total shock to you or is what you expected, and whether you are devastated or relieved, I bet there’s one thing you’re probably feeling as you look into the future: overwhelmed. “What is this ‘autism,’ exactly? What does this mean for my child? What is this whole ‘ABA’ thingy people keep talking about? Where do I go for support? How will I manage to pay for my child’s interventions? Will insurance cover it? What kind of schooling should I put my child in? What will the future look like? Did I inadvertently do anything to cause my child’s autism? Is it my fault?” (Spoiler alert: it’s not.)
With all these questions spiraling around in your mind, you might not know what to do next. So here are some things you might want to consider putting on your checklist.
12. Take a Minute and Breathe
Just hold on one second. Take a moment to relax. Breathe deeply and slowly. Pour yourself a glass of wine and sit down for a bit. Go out and take a brisk walk. Draw a bath. Take care of yourself. As you use this moment to relax, remember: it’s going to be okay. You and your child are strong, and you are going to get through this together. Your child is the same wonderful person you’ve always known and loved; nothing about them has changed since the doctor uttered the word “autism.” Only one thing has changed: you now know what your child has and have the opportunity to help them reach their full potential and live the happiest life possible.
11. Let Yourself Feel Everything
If this optimistic view is hard for you to fathom and fully embrace, that’s okay. You don’t need to have it all figured out right here and now. You don’t have to feel a certain way. Your feelings are your feelings, and they are not wrong. What matters is what you do with them.
So if you feel sad, angry, or any other host of negative feelings toward the diagnostic news, step back from your child and process it. Cry if you need to. Rant to a loved one if that will help. Buy a journal and write out all your feelings without censoring yourself. Bottling up your feelings out of guilt or shame will do you no good, so let it out.
10. Avoid a “Cure” Mentality in Favor of an Acceptance Mentality
No matter what anyone might tell you, there is no cure for autism. Striving to eliminate it in your child will not only not work, but it will also take a toll on you and your child. When your mentality is focused on trying to “fix” your “broken” child, you’re setting yourself up for disappointment, unmet expectations, and resentment. And your child will likely notice the negative attitude toward them, and it will hurt them; they will never feel like they are good enough.
An acceptance mentality is much healthier and will make both of you happier in the long run. Some incorrectly think this means complacency—doing absolutely nothing and taking no action to help a child grow and develop. This couldn’t be further from the truth. Instead, acceptance simply means that you love your child for who they are now—not for who you hope they will someday become. It means acknowledging that autism is an inextricable part of who they are, and that can be pretty great (autism, after all, is not just a set of deficits; it also comes with strengths!). It means fostering a positive self-image in your child while trying to help them reach their full potential as an autistic person.
Check out more helpful tips on the next page!
9. Get Organized
Here you can find a practical guide that will take you through the first 12 weeks following your child’s autism diagnosis. It provides tips and suggestions for getting everything in order—like creating organizational tools for your plethora of documents and giving you a rough timeline of what you can do week-by-week.
8. Educate Yourself
There are tons of myths and misconceptions that surround autism. Unless you were pretty familiar with autism before your child’s diagnosis, you may very well have believed some of those myths. For example, did you know the divorce rate among parents of autistic kids is not 80 percent? How about the fact that neither savantism nor intellectual disability is an inherent aspect of autism? And the oh-so-dangerous notion that people with autism cannot love—did you know that was total baloney, too? (And yes—your child probably does love you; they will just express it differently than a neurotypical child.)
So to dispel any myths and cast shadows of fear from the edges of your consciousness, become a voracious learner about autism. Read as much as you can from credible sources. Get some books to help you understand autism (I highly recommend Steve Silberman’s Neurotribes). And especially read blogs and works from other autistic people; there are tons of them out there, as you can see here. While the adults writing may not be exactly like your child, they can still offer insight into the autistic mind and experience and give you a better understanding of why your child might do the things they do. I particularly recommend authors like John Elder Robison, Temple Grandin, Cynthia Kim, Amythest Schaber, and, especially if your child is nonverbal, Ido Kedar, Carly Fleischmann, and Amy Sequenzia. These are just a few of the many prominent autistic voices you can hear and learn from!
7. Ask for Help
You don’t have to take this journey alone. Don’t be afraid to ask loved ones for help if necessary. Many times they will want to help but just won’t know what they can do. So reach out and ask if there’s something you need.
Check out more helpful tips on the next page!
6. Help Your Child Communicate
If your child is nonverbal or minimally verbal, you might enroll them in speech therapy. That’s great, but your child shouldn’t have to wait to learn speech before they can communicate effectively with you; they need something in the interim. Communication is power and an important form of self-advocacy.
Consider introducing your child to some form of Augmentative and Alternative Communication (AAC)—any form of communication other than verbal language, like sign language, pointing to pictures, or using gestures. Whatever works best for them is the method they should use.
You may hesitate to teach your child AAC because you worry this means they’ll never use verbal speech. However, research has not only indicated this is false, but it’s also discovered that using AAC can actually help your child speak.
Something else to keep in mind: speech or lack thereof does not necessarily reflect on one’s ability to communicate. Some verbal autistic children still struggle to communicate what they mean, and nonverbal children can communicate through their behavior. So avoid making assumptions about your child’s communication abilities based on their ability to speak.
5. Look into Research-Based Intervention
Not all interventions are created equal. Some have peer-reviewed research to back them up, whereas others simply have anecdotal evidence. And while anecdotal evidence isn’t a bad thing, a therapy backed by research is much more likely to be effective. The most common and most heavily researched type of autism therapy is Applied Behavior Analysis, or ABA. However, even ABA programs can vary from provider to provider, and not every child benefits from it. So do some research on the various types of research-based therapies that are out there. Here is a great resource you can reference to learn more about the various types of therapies you might consider for your child.
4. Beware of Quack Treatments
Along the same vein, be careful about the types of treatments you look into; there are many forms of snake oil out there peddled by people who prey on autism parents’ desperation to help their child. These types of treatments aren’t just ineffective; they can also be harmful, even deadly. Learn more about that here.
Check out more helpful tips on the next page!
3. Don’t Let Anyone Underestimate Your Child—Including You
Sometimes parents of newly diagnosed children are told that their child will never do x, y, or z—never talk, never be able to live independently, never be able to hold down a job. Recognize, however, that the people saying this do not have a crystal ball that allows them to see into the future. As one autism parent says, others are going to tend to see your child’s deficits rather than their potential and capabilities. Just because your child is nonverbal, aggressive, self-injurious, or feces-smearing now doesn’t mean they’ll always be this way. So keep your expectations reasonably high, work hard to help your child, and always believe in them; you may be amazed at how much they’ll accomplish.
2. Search for a Support Group
You may feel like you’re on your own at this point in time—but reality is, you are far from alone. There are plenty of other parents who have experienced the same things as you and can offer advice, support, suggestions, recommendations, or simply a listening ear. You can find this type of help from a support group of some sort—whether online or in-person.
1. Remember Your Child Is First and Foremost a Child
Therapy is important. Working on challenging behaviors is important. But never, ever forget that your child is just that: a child. Their thoughts, feelings, and opinions are just as valid as anyone else’s. They, too, have their limits. They deserve to have fun and play the way they prefer and just be a kid. If any treatment or method your child’s therapist employs makes you feel uncomfortable, listen to your gut; you are the one with the instincts about your child, not the therapist. Bottom line: if you wouldn’t let it happen to a neurotypical child, it should not happen to an autistic child.