After my daughter was diagnosed with autism, I learned five important lessons I want to pass on to other families. There is a lot more to this list than meets than eye — find out how doing these five things can help set you, your child and your family up for success and happiness.
Let me start by tell you a bit about our story. During my daughter’s first months of life, she experienced prematurity, severe global developmental delays, failure to thrive, anatomical differences, and vast changes in personality. None of the professionals could tell me if there was a connection between any of these. I wondered if my daughter would ever walk, talk or eat without a feeding tube. My questions almost never received answers other than “we don’t know,” or “time will tell.”
Several weeks shy of my daughter’s third birthday, just as the DSM-V was replacing DSM-IV, my daughter was diagnosed with autism. After diligently searching for explanations for nearly three years, I was surprised when the doctor said, “Under the diagnostic criteria established in the DSM-V, your daughter is autistic.” Looking back, the diagnosis seems so obvious, but at the time it was not.
Admittedly, I did not know much about autism at the time of my daughter’s diagnosis. The one thing I did know turned out to be a very dangerous tidbit of knowledge: early intervention is key. I over-extended my family’s finances, overbooked my schedule and introduced so much stress into my family’s life in the name of early intervention. I want to share with you the five things I would encourage any parent whose child was just diagnosed with autism to do.
1. Take a minute to process what the diagnosis does and does not mean.
This sounds simple and like common sense, but I have never met a parent who did this before jumping off the deep end in search of services for their child. Like it or not, raising an autistic child will change your life and the life you thought you would lead. It doesn’t mean your life will be better or worse because of the diagnosis, but it will be different.
I was lucky enough to attend TedMed the week before my daughter was diagnosed. One of the featured speakers, Andrew Solomon, gave a talk based on his book “Far From the Tree” which explores the relationship between parents and children who are very different from them. Or in other words, parenting when the apple does fall from the tree. It’s a long book — you might just want to read a chapter or two, but I encourage you to read some of it.
But before that, watch Solomon’s TedMed talk, Love No Matter What. This talk helped me get to acceptance so much faster. Solomon introduced me to the idea that a diagnosis, any diagnosis, should not impact your relationship with your child. At the end of the day the only thing that changes because your child has a diagnosis of autism is that insurance will cover more of their services. Your child is the same person they were before they received a diagnosis and so is your love for them.
The way you parent might change.
The way you communicate might change.
How you define success might change.
Your love for your child will not change.
Your desire for your child to be happy will not change.
2. Document developmental milestones, track expenses and organize paperwork electronically.
Kids on the spectrum see more medical specialists and therapists than their typical peers — this means there is a lot of paperwork. You will not believe how much paperwork until you experience it. Almost every intake document will ask you the approximate date your child first: sat up, crawled, walked independently, spoke their first word, ate solid foods, was fully potty trained etc. They will also want to know details of any regressions.
I strongly suggest you create a Google Sheet (like Excel but associated with your Gmail, email account) to document these milestones. On the second tab (Doctors), record the name, specialty, contact information, and dates your child sees each doctor. On the third tab (Therapists), record the same information from the doctor tab. Creating these spreadsheets now will help you keep needed information at your fingertips in a format that can be edited by you, your spouse, your parents and/or anyone else who might attend appointments with your child. These spreadsheets will save you time, keep you organized, and give you a sense of a control.
As you are building your Google Drive, folders should also be created for: Education, Medical, Dental, Therapy, Assistance, Expenses and Other. Any paperwork regarding your child should be scanned or saved in the correct folder. That way you don’t have to dig through a ton of papers to find your child’s last ETR or IEP every time you try to start a new service. Make sure to label each document; for example, my daughter’s IEP from last year is labeled IEP2019. If you have multiple kids with disabilities, include their initials and create separate folders for each child.
You will likely want to track all medical expenses: this means scanning and/or saving EOBs. Keep parking receipts, track mileage incurred while driving to medical and/or therapy appointments, and receipts for anything recommended by a doctor. You will be surprised how quickly these expenses will add up. This information will not only help your accountant at tax time but will also be helpful if you apply for assistance programs or grants.
The importance of organization cannot be overstated. The sooner you create a system to manage the paperwork, the happier you will be.
3. Discuss the diagnosis with your spouse, significant other or parenting partner.
There is no way to sugarcoat this: parents of kids who are medically involved and/or have developmental differences are often under significantly more stress than couples raising typically developing, healthy children. Many couples struggle to manage the stress in a constructive way together, which puts pressure on the relationship.
There is a statistic stating the divorce rate for parents of kids with ASD is 70 to 80 percent — I don’t believe that statistic for a minute. However, raising a kid with ASD can be emotionally taxing in ways that cannot be fully understood until experienced. The biggest predictor of divorce in parents raising kids on the spectrum, or any kids for that matter, is their inability to cope with the stress as a couple. Couples cope with stress in many ways, but when they fail to do so together, it is the beginning of the end.
Example 1: Both parents are very emotional after learning their son has autism. Mom thinks it is best to find the best therapies to help their son. Dad prefers to seek a second opinion and does not believe his son is on the spectrum. If the parents cannot agree on the existence of a diagnosis this will only lead to bigger problems.
Example 2: Mom wants to invest time and money into ABA therapy. Dad wants to explore alternative treatments. There are limited resources available, and if you and your spouse fundamentally disagree about how to use those resources, the disagreements will be never-ending.
As a couple you need to identify your priorities and assign your resources accordingly. Also, you need to determine your plan of attack. Who will go to most of the medical appointments, school meetings — will it be the same person? Who fills out the paperwork? Who drives to therapy?
My husband and I agree on our priorities. We overextended our resources multiple times because I/we didn’t accept the lifelong nature of autism means the expenses keep coming. In our house, I fill out all the paperwork for our daughter with autism as well as attend most of her appointments. We have staff who drives her to activities. My husband is responsible for paperwork and appointments for our two typically developing kids.
For most other things, we divide and conquer. I am most likely to do the nighttime routine; my husband is most likely to cook dinner. It works for us most of the time, but we still fight. We are tired, stressed, financially strapped, and try to save our patience and best selves for the kids.
4. Meet other people who have kids with autism.
Your social circles will likely change once your child receives a diagnosis. The changes might be slow at first, but they will come. Find your tribe early — people who have kids like yours. This group of people will be so helpful. They will give you parenting tips, be a shoulder to cry on when you need it, celebrate loudly when your child achieves a milestone (no matter how delayed), understand how heartbreaking it is when our children are marginalized or teased, and become the people you lean on most in the world — because they get it!
My new friends are great. We have almost nothing in common except that our kids have autism. I cuss like a sailor while one of the other moms apologizes for saying darn it. I work full-time, two of the women choose to stay at home, another is retired. Politically we are all over the spectrum (ha!) We come from all backgrounds, urban, rural; we are white, we are black; we are straight and we are gay. The love of our children and our shared experiences are the ties that bind us.
5. Decide to be happy.
This one is so much easier said than done. For many people it requires completely re-calibrating the way they think. I believe your life will be what you make of it. I encourage to embrace “Team Quirky,” (a term used by MamaFry) and to advocate for neurodiversity rather than focusing on finding a cause or cure for autism (which is the goal of Autism Speaks, an organization I abhor). Here are some things about my daughter (that can be attributed to autism) that make me happy:
Her relentless, single-minded pursuit of “the next thing”
Her electric interests: catfish, ballet, astronauts and the Wiggles
Caroline might be nonverbal but that doesn’t stop her from loving to stand on a stage with a microphone in her hand
Authenticity — I know authentic is a buzzword right now, but you don’t know authentic until you know autism
Without autism, I would have never met many of the most impressive people in my life. I would be inflexible and not nearly as understanding as I am today. And I would have missed the opportunity to see what raw emotion looks like. —Seeing happiness and joy through the eyes of my daughter is unlike any other happiness and joy — it is so pure, real and unadulterated.
Choose to focus on the things you can control and find happiness. Don’t focus on what your child may not be able to do — instead, think about the activities that bring your child joy. Find ways for your child to invite you into their world and spend time relishing in its wonder.
The day your child is diagnosed with autism can be overwhelming. The pressure to get services started immediately is intense. In the chaos of this time, I encourage you to remember the wise words shared by flight attendants before every flight, “Should the cabin experience sudden pressure loss, stay calm and listen for instructions from the cabin crew. Oxygen masks will drop down from above your seat. Place the mask over your mouth and nose, like this. Pull the strap to tighten it. If you are traveling with children, make sure your own mask is on first before helping your children.” In case of an emergency we need to put on our oxygen mask first because if we pass out, we won’t be able to help anyone.
It is OK to take a minute or a couple of weeks to process your feelings before you launch into life as the parent of a child with autism. Taking care of yourself first is the best way to set your child, your family, and yourself up for the greatest success.
“Welcome to Holland” — this is a super quick read it explains the experience of raising a child with a disability. Most parents in the disability community have very strong feelings about “Welcome to Holland”; you might as well decide how you feel about it.
“Neurotribes” — a great read by Steve Silberman exploring the evolution of autism.
“The Way I See It” — Dr. Temple Grandin discusses her experiences living with autism and offers parents, teachers and autistic people helpful tips, practical strategies based on her perspective and research. In fact, most anything about autism written by Dr. Temple Grandin is a great read. I love learning about autism from people with autism.
“Carly’s Voice: Breaking Through Autism” — this is a fabulous book written by Carly who is a nonverbal autistic and her father. I strongly recommend this book for anyone raising a child with little or no verbal language.
Love No Matter What, a TED Talk by Andrew Solomon based on his research about the relationship shared between parents and the kids they raise who are different.
“Rain Man” — just checking to see if you are still reading. That is a joke. You will be shocked by how many people think they are knowledgeable about autism because of this movie. I kid you not.
“Temple Grandin” — a biopic about Dr. Temple Grandin’s life. “Different, not less,” is how Dr. Grandin’s mom explained her growing up.