My Child Might Be Autistic and I Have So Many Questions

“Has anyone ever talked to you about autism? Because I think Eric is autistic.”

I will never forget the day that my son interrupted my one-on-one with my manager to tell me about a World War II documentary he was watching on The History Channel. When he left my office and I had apologized for the interruption, my manager asked me that question.

I said “Um…what? No. He’s strong-willed and has anxiety.”

My manager laughed and said, “No, he’s autistic. I guarantee it.” We proceeded to spend the next hour and a half discussing his reasoning for making a diagnosis in about two minutes that medical professionals hadn’t gotten to in six years. Spoiler alert-seven months later, he was proven correct.

In this post, I will share with you the information that we discussed that day, summarize my family’s experiences, and arm you with knowledge to break down the stigmas, stereotypes and fear commonly associated with autism.

I Don’t Know Anything About Autism

If you are reading this, you’re probably just starting your journey on the autism yellow brick road. Maybe a pediatrician or teacher has suggested autism, maybe you’ve been doing research on your own and autism has come up in your search results for why isn’t my child talking yet. There’s a ton of information out there; some of it’s good, a lot of it is bad, and a bit is just meh. I’m going to guide you to the good, useful information and walk you through the process of determining if your child is autistic. Let’s get started!

What Is Autism?

Google what is autism and you will get results that present a negative, depressing definition of autism. If that’s the only information you read, you will be scared. I recommend that you start with this summary of autism from the NHS in the UK.

People who are autistic have different brain wiring than the majority of the population. This means that an autistic person experiences the world differently than a person who is not autistic. Sometimes an autistic person might need help or support due to these differences.

Autism is a way of being. It can’t be changed, it isn’t a choice, it isn’t a disease that can be cured or medicated, and it’s part of the individual for their entire life. It’s not bad, it’s just different.

How Do I Know If It’s Autism?

My manager diagnosed Eric within two minutes because he has personal experience with autism and can spot it in the wild. Unfortunately, not everyone has these magic powers.

Disclaimer-I am sharing this for educational purposes, and it is not meant to be a substitute for medical advice or to be used as a tool to make diagnostic decisions.

The diagnostic criteria for autism is found in the DSM-5, which is the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. This is a medical reference for psychologists, and it reads like medical jargon. What you need to know is that there are separate sets of criteria that have to be met for an autism diagnosis. Think of it as a checklist for now, and we’ll get into more details in a minute:

• Meet all three subcategories of social communication and interaction criteria:
  • Social-emotional interactions.
  • Nonverbal communication behaviors during social interaction.
  • Relationships and friendships.
• Meet at least two of four subcategories of restricted, repetitive behaviors:
  • Repetitive movements.
  • Rigid, inflexible behavior.
  • Restricted, fixated interests.
  • Unusual responses to sensory stimuli.
• There will be a severity level assigned based on the scoring of the assessment (level 1, 2 or 3).
  • This doesn’t mean “a little autistic” vs. “a lot autistic.” The levels refer to how much support the individual requires.
  • There’s controversy within the autism community about the levels. You should know that most people don’t like to reference them because they do not feel that they accurately represent autism and are misunderstood.
  • Know your child’s level for paperwork, but over time you will know where your child needs lots of support and accommodations and where they’re pretty independent.

Here’s what I wish someone would have told me to do when I was researching the characteristics of autism:

• Print the verbatim DSM-5 autism diagnostic criteria, and set it aside for now.
• Go read DSM-5 Criteria for Autism Explained in Pictures by Dr. Neff, a psychologist who is autistic. This is a great, easy to understand explanation that doesn’t sound like medical jargon and is neurodiversity-affirming.
• Think about these characteristics through the lens of your child. Where do you see a match? Start to write these examples down beside the criteria (make your own list or scribble them on your printout). You’re going to need these later.

I’m going to pause here and say that by now, you’re probably feeling overwhelmed, emotional and exhausted. Applying such a clinical process to a child that you love can be heart-wrenching. Big hugs-I feel you, and you’re doing great.

Who Can Tell Me If My Child Is Autistic?

So you’re considering that your child could be autistic. How do you know for sure?

The short story is that your child will need to receive a diagnosis of autism from a psychologist that is trained to perform autism assessments. There’s a couple different paths to take, and I’ll give you an overview of each. You should check your insurance plan’s benefit details to determine which options are covered, the coverage, and any prerequisites that are required for your plan.

Use an independent psychologist. Search for self-employed psychologists in your area that perform autism assessments for your child’s age range. Next, you’ll want to see if they accept insurance; unfortunately, many do not (in my area, most accepted personal checks only). This is probably the fastest route to a diagnosis, but also the most expensive.

Go through your pediatrician’s hospital network. Your pediatrician will submit a referral for your child to receive an assessment through their office’s hospital network. This route is likely to be covered by insurance, and if you have an FSA account you’ll be able to use it. This is the route I pursued first, but ultimately abandoned due to the wait list for an assessment being 18 months long. There’s a shortage of psychologists who can perform these assessments which leaves families waiting a very long time.

Use an autism therapy center. I used a combination of my insurance plan’s network provider database as well as Google to find providers that performed autism assessments. I found an autism therapy center that also offered autism assessments, was in my provider network, accepted FSA accounts, and their waitlist was only a month long. We chose this route after performing some independent research to verify that this place was legit.

How Does The Psychologist Make An Autism Diagnosis?

So you’ve jumped through all the hoops to get an assessment and you have an appointment. Congratulations! What happens next?

Before the assessment, you (as the parent) will have a ton of forms to fill out. I am not exaggerating. These forms will include detailed medical history of your child and their biological parents, as well as questionnaires that give the psychologist a starting profile of your child’s personality, behavior, mental health and sensory sensitivities.

Tips to make this less painful-utilize MyChart to look up all of the nitty-gritty medical details of your pregnancy (yep, they ask about your pregnancy and delivery) and your child’s medical history if you have MyChart accounts. Set aside time each day for three-four days and complete one questionnaire per day, then submit them all at the same time. Last tip-print as much as you can (school records, medical records, anything) and put it in a three-ring binder and take it with you.

The assessment administration varies by provider. I’ll share how ours went, and some feedback from parents who have had different experiences.

The psychologist and our family (me, Cam and Eric) went into the exam room. There was a table and some chairs, a shelf with some toys and books. We reviewed all of our responses to the questionnaires, and she asked some additional questions while typing notes on her laptop.

Next she focused on Eric. She talked to him and asked some questions, then performed a couple assessment activities using toys and a short story. Eric was okay with telling her about what he likes and is interested in, but didn’t want to talk about anything else. He struggled with the activities, and by the end of the assessment he was hiding under a chair, crying and screaming (I was crying as well; I hate to see my child struggling).

I want to be clear-the psychologist was not being cruel or using any techniques that were antagonizing Eric. The assessment lasted about two hours, and it was emotionally draining. He was just done.

At the end of the assessment the psychologist confirmed that Eric was autistic, and explained the diagnostic criteria that was met. She made several suggestions for us to consider to help him at school and at home. She explicitly said he did not need ABA therapy. She informed us that this would be the only option pushed on us, and we should not pursue it because it would not help him. She recommended play therapy (at the time, one of our biggest concerns was Eric’s ability to regulate his emotions) and potentially occupational therapy. We received the full diagnosis, her recommendations and contact information in a 17 page document via email about a week later.

I have heard from other parents that they have had to complete the assessment in two separate sessions instead of one, and some have completed it through video appointments. Video was offered to us, but I knew that we needed to do ours in person based on how Eric’s symptoms present themselves (after the assessment the psychologist agreed that video would not have been a good choice).

Should I Get An Autism Diagnosis For My Child?

That’s a personal medical decision that only you, as your child’s parent, can make. There are benefits from getting an official diagnosis that you won’t be able to utilize without one:

• IEP or 504 plans to provide personalized support and access to services like speech and occupational therapy at school.
• Therapy outside of school, such as ABA, additional occupational therapy, .
• Access to services and support programs through your county’s board of developmental disabilities.

Autism is a medical diagnosis, and is protected by HIPPA laws. It’s part of your child’s medical records, and is not shared without your consent. If your child is autistic, they will benefit from the services that are available with a diagnosis, and provide them with the information and confidence to advocate for themselves as they get older.

What Can I Do Now?

The first thing you need to do is breathe. Autism seems like it’s a race against an imaginary clock, creating unnecessary urgency and anxiety. Remember-your child isn’t broken, and there’s nothing to fix. You’re looking for the best ways to support them so they can be their best, most authentic selves.

Talk to autistic people! If you don’t have any friends who are autistic, check your friend group for parents of autistic children. Reach out to your child’s school to connect with an intervention specialist-my son’s IS actually asked to call me, because she knows how overwhelming being “new” to autism can be.

Learn about autism through the resources that I have referenced in this post, as well as in my Resource list. These are all resources that I have personally used and loved, and are not sponsored or affiliated content. Do your own research to find blogs and social media accounts that you connect with.

Take your time chasing down therapies if you’ve got a diagnosis. The authors of I Will Die On This Hill refer to this as an “autism-moon” (I love that phrase), and it means taking a break to do research on your own time, and decide what’s most important to you and your child. There is no magic clock for autism that turns kids into pumpkins when it hits midnight.

You Will Always Have Questions, And That’s OK

At the time of this post, I’ve been the mom of an “officially autistic” child for one year and seven months. I have been told by doctors, psychologists and psychiatrists that I know a lot about autism and they want to know how I know so much. The tongue in cheek answer is that I have ADHD and an internet connection. The longer answer is that I want to be the best mom for my kid, and I do a lot of digging around on the internet, Instagram and Pinterest for answers to my questions.

You’re not going to know everything there is to know about autism. Don’t put that pressure on yourself. You’re only going to be an expert on your child. You can’t take on every suggestion at the same time, even though you may feel desperate to help your kid. Prioritize what’s most important and will have the biggest immediate impact for your child and your family and go after that first. Then you can start to explore other things.

This is not an easy road to travel alone, so reach out and make connections (even if they’re virtual). Feel free to contact me or leave a comment below! Virtual hugs, and honey, I know that just by reading this post you love your kid and you’re doing great.