How Parents Can Navigate the Murky Post-Diagnosis World

Getting past the initial hurdles after receiving your child’s autism diagnosis is tough. Here, a mother shares practical advice and wisdom gained from her own journey with her child.

“Your child has been diagnosed with autism.”

In the winter of 2014, my husband and I received this news from our child’s psychologist. These words are unsettling for a parent to hear.

This diagnosis started a whirlwind experience, one filled with a range of emotions as we looked to provide our child with the best resources and support. We didn’t know what to expect or where to start. We went through the different stages of denial, pain, guilt, and depression. My husband and I are both entrepreneurs, though, and that helped us move to another stage: taking action.

For all the parents that have received a recent diagnosis, know that you are not alone. And know that there are several ways you can get started on the right path for you, your child, and your family. Let’s take a look at all the ways you can smooth the journey for your child and your family after an autism diagnosis.

Gain the right perspective

At the start of this journey, there will be a lot of unknowns thrown at you. There will also be terms you don’t understand: IEP, executive functioning, echolalia, applied behavioral analysis therapy, and countless more.

You may be told to call the local speech therapist, occupational therapist (OT), and behavior service providers, or do your own research online. For us, it felt like we were in uncharted territory, but we needed resources. I felt like I needed someone to tell me what to do and when—but I didn’t have that resource. These unknowns can feel overwhelming.

All these stressors made me want to gain control of the situation—and the only way I felt I could do that was to take immediate, drastic action. I briefly considered leaving work entirely. You may have a similar knee-jerk, impulse reaction to a diagnosis: you may want to quit your job. You might want a grandparent to move in to help with childcare. Or relocate to a place you feel might be more financially manageable.

Take a step back and take a breath. Realize that how you feel in this moment is not how you are going to feel in six months or in a year. You may feel overwhelmed now, but you are only going to accumulate knowledge and understanding from this point on. You will never feel more helpless than you do right now. Do not compound the situation by creating further instability, when you’re not even sure what the diagnosis will mean for you and your family, and what your new life will look like.

Instead of trying to gain control, try to gain perspective. Try to get an honest, holistic view of your child’s strengths and challenges. Ask people who are in similar situations for advice and guidance about what these characteristics will mean for their learning journey. Confide and listen to your trusted inner circle. Make sure you are maintaining your own mental health, so you can have the wherewithal to navigate your child’s diagnosis with a positive mindset and perspective.

Surround yourself with the right people

This is not a journey you can take alone. As the old saying goes, it takes a village. That’s even more true after a diagnosis: you are going to need the right psychologist, the right speech therapist, and the right educators for your child.

As you look for the best educators for your child, look beyond just their credentials and degrees. See if they connect with your child, if they are empathetic, and if they can teach in a manner that will truly resonate with your child. Ask yourself: are they able to cater to your child’s individual learning style? Will they be able to play to their strengths, while also making strides on their challenges?

But beyond just the right instructors, you need the right people around you. To be your best, for you and your family, you need to surround yourself with people who are positive, who believe in you, who are willing to help you along your journey. There’s no longer time for judgmental people, negativity, or those who don’t meaningfully contribute to your life. It’s best to trim your inner circle to those you trust entirely. Some may call it selfish; I call it self-preservation.

Once you’ve trimmed your inner circle, don’t be afraid to lean on them: if they offer help, take them up on it. Ask for help babysitting so you can exercise. If your boss tells you to take a day off, take it. People want to help, but they can’t help unless you let them.

Advocate for your child—and for yourself

There are so many hidden resources for neurodiverse children. Often, there are specialists and service providers who can accommodate a range of needs, as well as funding that can be used to enhance the learning experience.

One of your first steps after a diagnosis should be to meet with your child’s teacher and school administrators. Approach such conversations with the mindset that you are all on the same team, looking for the best possible outcome for your child—rather than making it confrontational, or simply asking what they can do for you. Make it clear that you are in this together with them.

In that same breath, do not take “no” for an answer. People will find solutions for you, but you must take an approach of “polite persistence.” Understand and empathize with their position, but also make it clear that you are going to go to every length to improve your child’s situation, and a “no” is not going to end the conversation. You know what is best for your child, not anyone else. Don’t be afraid to voice that perspective.

Finally, do not forget to advocate for yourself and for your time. We all have limited time, but an autism diagnosis can make time feel like an even more fleeting resource. It’s natural to feel guilty when you take time for your own interests, hobbies, and life outside your family. But these activities are critical: they help maintain your mental well-being and maintain your sense of self. Go take music lessons, or learn karate, or train for a half marathon.

Cultivate your identity beyond just being the parent of a neurodiverse child. You have your own life beyond your family, and you do not need to apologize for that.

Conclusion

Even though it can be a difficult journey, especially starting out, there are moments of inspiration everywhere.

My neurodiverse child is a rabid history buff. He loves reading about a range of historical events. Recently, he noticed that the Battle of Waterloo was wrongly dated in an encyclopedia he was reading. It said “1851” instead of “1815.” I helped him write the historian, who wrote back confirming my son was correct, there had been an error in the publication.

It was a small moment. But it was revelatory. At that moment, my child reminded me why it’s so important to challenge assumptions, believe in yourself, and realize that you might have the best answer.