10 things I wish someone had told me about raising a neurodiverse child

Hindsight is 2020. After 10 years of raising a neurodiverse child, this saying could not be more true. I’ve experienced highs and lows and everything in between. When my son was first diagnosed with autism spectrum disorder (ASD), I received lots of advice. Looking back, I wish I was in a better headspace to receive it, but I also wish it would have been this advice that I’ve compiled below. I’m hoping some of these tips help you as you navigate your journey of raising a neurodiverse child. 

Related: I’m the mom of a child with autism. Here are 3 things I want people to know

10 things I wish I’d known raising a neurodiverse child

1. Create your child’s “elevator pitch”

“Tell me about your child.” You’ll be asked this question (or some variation of it) time and time again. On school and camp forms, physician and therapist intake forms, at appointments, for participation in clubs and sports, and when interviewing babysitters. Your pitch should describe who your child is and what his or her current strengths are. 

I also include areas of challenge to have a more holistic view. When I was first asked this question, I fumbled around and took way too much time to answer. In this instance, less is often more. Once I perfected his elevator pitch, I noticed the person asking was able to cut through generalities, ask more targeted questions and provide more insight as to how they could work collaboratively with my son and me to address his strengths and needs. 

Not surprisingly, your child’s elevator pitch will change with time. Like your resume, make it a priority to reflect upon and update it. 

A couple of years ago, my son’s elevator pitch went something like this: “T is eight years old and is an only child. He lives in two homes, dividing his time between me and his dad. He’s a happy kid that enjoys music and speed activities (i.e. biking, scooters, running). He’s a great reader and likes learning about the weather, first responders and the different states in the US. He’s in speech and occupational therapy.”

“He has fine motor/motor planning challenges, so activities that involve this can be more difficult (like certain crafts and writing). If he’s not participating or paying attention, it may mean he’s tired and needs a break or he’s having difficulty following along or understanding what to do next.” 

This pitch is less than a minute but gives important information to understand your child and individualize the remainder of the conversation.  

2. Focus on growth, not the AAP’s developmental milestones

When T was younger, I chased developmental milestones. No one told me that hitting milestones is generally an organic process, and as a first-time mom, I didn’t know any better. I wish my pediatrician would have said, “I’m asking you these questions for my knowledge and how to best support T, but not all children will follow these milestones. What’s most important is progress.” No one ever said that, and I was left with overwhelming anxiety. 

Neurodiverse children often have scattered skills and do not have generalized timelines— and this creates uncertainty. To combat that, I developed (and celebrated) non-traditional milestones that were important to his development and our family. T has many goals, but they are no longer tied to deadlines like they once were. Progress is at the center of all his goals, whether they involve academics, extracurricular activities or relationships.

3. Take a breath and wait it out

Many magical and unexpected moments occurred when I paused and allowed T to share something or do it on his own. Moms of neurodiverse children have so many competing demands on their time, so it’s often easier to remind your child to do something or just do it for them. When you can, resist the urge to sweep in and take control. 

Christina Semanchik, MS, BCBA, LBA is the Associate Clinical Director at Behavioral Framework and oversees behavioral programming for neurodiverse children. “In my practice, I’m often reminded that less is more. We promote growth and learning by fading ourselves and allowing children the space for independence. Using a specified time delay can elicit achievable skills for your child and reduce prompt dependency—when a child relies on being told what to do or when something is done for them.”

Related: 10 things I’ve learned as a mom to an autistic child

When T was younger, I would often fill the silence in the hopes of having him speak more. In reality, I spoke so often, there likely wasn’t much opportunity for him to speak. When he did start speaking, I was thrilled, but then unknowingly asked lots of closed-ended questions like: Are you hungry? Wasn’t that fun? I soon learned there’s a way to encourage communication and a way to hinder it.

This also holds true for learning to do things on his own. As T was learning to get dressed, I’d often notice when his shoe was on the wrong foot or his shirt was on backward, and I’d often let him know before he noticed it, depriving him of the opportunity to self-regulate and become more self-reliant. 

We recently implemented a DIOYO (dee-ow-yo) day. DIOYO stands for Do It On Your Own. It usually falls on a weekend when there are fewer time pressures and my son knows the expectation is to do something a bit more challenging on his own before asking for help. I’m planning on having DIOYO days during the week as well, but limiting it to certain activities so he continues to get practice without it becoming too overwhelming.

4. Find a trusted sounding board and accountability partner

In the beginning, almost everything is challenging. Many decisions need to be made—and they are important ones. Decision fatigue is real, and without a trusted sounding board and accountability partner, it’s easy to fall into the trap of simply checking off your to-do list. The alternative is also detrimental: being immobilized by decisions and staying stuck. 

Your sounding board and accountability partner may be the same person or different people. My family and best friend from high school serve as sounding boards. My partner serves as both. Raising a neurodiverse child affected all aspects of my life—work, family, friendships, community and my relationship with myself. I’m fortunate to have friends and professionals to turn to when I’m struggling or spent in one of those specific areas.   

Allison B. Cassell, LPC, MS is a Licensed Professional Counselor with Cassell Counseling. “It’s important to find a trusted sounding board or accountability partner. This person can help you validate and articulate both minor and major concerns and can serve to remind you that any questions you have as you navigate a new experience are important.” 

5. A good therapist asks questions and solicits feedback and collaboration

When my son first received his ASD diagnosis, I desperately wanted someone to tell me what to do. However, the best therapists and teams don’t operate this way. They implicitly understand that achieving goals and maximizing progress requires collaboration. If your child’s therapist insists on having sessions without you present (and doesn’t give a sensible reason) or isn’t open to providing data or listening to your feedback and concerns, this is a red flag. 

As a parent, you should know what they are doing, how to implement it at home, and why they are doing it. Also, if your child has more than one therapist, I’d recommend having the team meet every quarter, if possible, so all team members are aware of your child’s collective goals and can better understand his or her strengths and challenges holistically.   

6. Focus on what you have

I was listening to a podcast and Greg McKeown, the author of Essentialism, was the guest. He said the following which resonated with me: “If you focus on what you lack, you lose what you have. If you focus on what you have, you gain what you lack.” 

Over the past 10 years, I’ve focused on what I had, what I wish I had, what I didn’t have and everything in between. When I focus on what I have, most next steps seem possible and attainable. This mindset reframes my thoughts from focusing on the hurdle in front of me to focusing on progress—both big and small—and the supports in place to tackle what needs to be tended to.  If you find your thoughts focused primarily on what is missing or what you don’t have, I’d challenge you to continue exploring ways to shift your mindset.  

7. Don’t forget the pre-work

Most of us would never walk into an important meeting or presentation without some degree of preparation. The more you know about the topic, the players and the intended outcome, the smoother the overall experience will be. 

Whether I’m meeting a new therapist, enrolling my son in lessons or starting a new school year, I take the following steps.

1. Ask for 15 minutes of their time. 
2. Share your child’s elevator pitch. 
3. Agree to touch base after a certain period of time. 
4. Share your observations, perspective and recommendations. 
5. Listen to theirs. 
6. Be collaborative. 
7. Repeat.   

When my son enrolled in choir, I asked the choir director if we could schedule a call. In the short time we spoke, I learned the class would be expected to read lyrics, pay attention for extended periods of time and memorize songs for the spring performance which was several months away. We were able to discuss specific strategies if my son got distracted and how to minimize them from the get-go, such as having him sit closer to the front of the class.  

Related: Two of my sons have autism. Here’s how I’ve moved beyond guilt to thrive on the spectrum

8. Don’t confuse therapy with babysitting

Before T was born, I didn’t give therapy much thought. When it was determined he would receive various therapies through our county’s Early Intervention program (birth to three years old), I wasn’t entirely sure what to expect. Naively, I assumed my involvement would be somewhat limited and I could use the time to take a much-needed shower or meal prep. I could not have been more wrong. 

When your child is young and attends therapy, it’s most successful when you are an active participant and there’s a partnership between the therapist and the parent or guardian. The learning curve is high. There’s new terminology and techniques to learn, progress updates and trying different strategies if things don’t go as planned. Sharpen your listening skills, as they will become one of your greatest assets along this journey.

Judith Bush Sauer, MS, OTR/L is the Director of Main Line Pediatric Occupational Therapy. “After practicing pediatric OT for over 45 years, I have worked alongside many different parents, with a multitude of parenting styles. In all cases, teamwork is the key to success. Both the therapist and parent bring important information and skills to the table that need to be openly shared with trust and honesty.”

“My three mantras for a successful partnership are: 1) Parents need to trust their gut and openly communicate their concerns 2) Parents should be active participants and should be included in the evaluation and participate in each session whenever possible 3) Only part of the child’s goal achievement will be from therapy; the rest is from what parents have learned to do at home. When these strategies are incorporated, progress is much faster.” 

9. Take the time to check in with yourself

When T first received his ASD diagnosis, I wasn’t surprised—I was exhausted and scared. This is the mindset so many parents are in when they are responsible for doing inordinate amounts of things on behalf of their child. 

Have you seen the 100 Day Kit developed by Autism Speaks? It’s 100 pages long and it details what parents should be doing during the next 100 days of their child’s life to make the best possible use of that time after diagnosis. 

Don’t get me wrong, I am so thankful that a document like this existed to guide me through those early foggy days. But processing and fully understanding the information I was given was another story entirely. You need to find a way or two to think as clearly as you can so that the next steps are manageable and you’re still treading water by Day 15. 

Over the years, I’ve learned that I’m most effective in helping my son when I take the time to check in with myself first. What is my mindset? Would I benefit from some fresh air or reading my favorite magazine? This is where my sounding board and accountability partner can help. Narrowing my focus also makes things manageable. 

10. Narrow your focus

There are only so many hours in a day to get things done. For me, what has worked is to break them into manageable smaller tasks with time set aside for doing something for myself. Lately, it’s been a 30-minute walk while listening to a favorite podcast or browsing the beauty section at Target. 

Cassell says, “As you navigate a new experience, questions will arise and you are likely to experience a flooding effect, as one question may lead you down multiple paths. At this time, it’s important to narrow your focus, starting with a very broad, topical view—placing things in categories of those you can and cannot control.” 

She recommends prioritizing the things you can control and thinking about actionable next steps. For those items you cannot control, she suggests keeping them in a journal or memo on your phone so they can be easily referenced on in those moments you find yourself headed down a rabbit hole of hypotheticals.

Related: This stranger’s kindness to a child with autism is a lesson in compassion

As I’ve navigated this journey, these pieces of advice have helped me save time, communicate and collaborate more effectively, provide much needed check-ins with myself and become a more confident parent. As a mom of a neurodiverse child, you can do this—and you can do it well. Believe in yourself and your child. The rest will fall into place.