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9 Things I Wish I'd Known During Our Autism Diagnosis Process

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I remember back to the time that I first told my Hail’s pediatrician we would like to have our boy tested for autism. We’d noticed a lot of odd behavior — he would line everything up when he played, he had sensitivity issues and would gag on foods, would yank on his hair until he pulled it out, and he would bang his head on the wall when he was stressed out. He was delayed in milestones like walking, talking, crawling, and he preferred to play with garbage than all the toys we bought him. He would obsess over things for long periods of time. After a quick search online, the accumulation of things pointed to possibly autism or some other developmental delay. We were a bit freaked out but decided it was better to know and do something with it, read something, try a therapy — anything other than just guess and tell people that he was “just weird” or “we don’t know what’s wrong with him.” A diagnosis would help reassure us that we weren’t bad parents; there really was something wrong with our kid.

So, we asked for testing. While going through the process, we learned a lot of things we hadn’t previously been told. We found this quite daunting. Now that we’re “experienced” autism veteran parents (really there is no such thing as being experienced when it comes to autism) I feel that I need to share the knowledge I discovered when we were pursuing diagnosis to help make the process less scary for another new parent.

1. Autism is a spectrum disorder.

I know you’ve likely heard this several times, but if you’ve met one kid with autism, you’ve only met one kid with autism. Autism really is a spectrum disorder and can range from a huge spectrum of issues. Even within the same family, people can have different autism symptoms and still be on the spectrum. You’re firstborn could be completely nonverbal, have epilepsy and an IQ of 190. Your second child could just be a bit quirky, spin and flap when excited and not do social situations well. Or your child could be like Sheldon Cooper from “The Big Bang Theory” and be super nerdy and intelligent but have to have a bazillion rules in place to function.

2. Don’t let a doctor tell you your child doesn’t have autism without testing.

Many doctors feel that autism is over diagnosed. But since we simply know more about it than we ever did before, diagnosing it is easier. If you think back in your family, there’s likely one weird relative who was a bit eccentric and didn’t really relate well to the rest of the family. They might have had autism, but nobody knew what to call it then. Some doctors will even go as far as telling you that your child can’t possibly have autism because he looks you in the eyes when you speak or because they’re smart or can speak. Whatever the reason, these are still misconceptions, and your child could still have autism. It never hurts to have them tested if you suspect that they might be autistic or developmentally delayed. If your pediatrician won’t do testing, look into a developmental pediatrician or a psychiatrist who will.

3. There are different autism diagnoses — an educational autism diagnosis and a medical diagnosis. Pursue both.

You want to pursue both because they serve different purposes. If you have a medical diagnosis, it’s easier to pursue therapies such as applied behavioral analysis (ABA), occupational therapy and other types of medical help you may need through your insurance. Often times, comorbid diagnoses are present, such as sensory processing disorder or anxiety or even ADHD, and they are more easily treated if a doctor, therapist or psychiatrist knows your child also has autism.

4. Diagnosis can take a long time.

I say this because it really is true. Depending on your area, how many places are providing testing or availability of a doctor who can diagnose autism, a waiting list of a year or longer isn’t uncommon. In my area, with my insurance, it took us nearly nine months before we received a medical diagnosis and a year before we received an educational diagnosis. In my experience, when we pursued diagnoses — we did all kinds of other testing to ensure autism was the cause, and we weren’t looking at other developmental delays, auditory issues or other issues. The developmental pediatrician wouldn’t test for autism until everything else was ruled out.

Wait lists for services can be long; it’s better to focus on your child’s challenges and emphasize them than it is to sugarcoat them. If it’s diagnosis and treatment you want, the earlier you get treatment the better, but younger children can be hard to diagnose since the trajectory is so different for developing children.

5. You don’t have to try or stick with every treatment.

Treatment won’t harm a child who isn’t on the spectrum, but it could be important for someone who is. Trust your instincts on treatment and do your homework to make sure it feels right for you and your child because you know what’s best. Not everything you try will work. Not every treatment you try is going to be a good fit for your child or family. You don’t have to do them all.

6. You are your child’s only advocate.

Sometimes, you are your child’s only advocate. Nobody will fight for them like you will. Follow your instincts, and don’t give in to the experts who might not see what you see. You spend the most time with your child, while doctors and experts only see them for a few minutes in the office. A diagnosis doesn’t change who your child is or mean they won’t have a beautiful life and future. Find a wonderful group of supportive people in the trenches, even before you have a diagnosis, because they are the best resources you will ever have in navigating this territory.

7. It’s OK to be angry.

In the beginning, I was angry at the disability, the label, the diagnosis. Now, I look to how I can improve access to acceptance, therapy choices by way of improving insurance, respite, education and transitioning into adulthood challenges. Disability happens, but how we treat that person as a society defines us, not people with disabilities.

8. Don’t be afraid of a diagnosis.

You’re not labeling your child with a problem. You’re identifying tools to help them. And the diagnosis doesn’t change who they are. Everything amazing about them is still amazing. A diagnosis doesn’t change who your child is. It does not change your path as a parent or as a family. Your child is who they are, diagnosed or not. It gives you answers and ideas, diagnosis does not make your child any different than the day before diagnosis. If anything, a diagnosis will help you help your child better.

9. Don’t compare your child to other children.

 Yes, that is ridiculously difficult to do as you see other kids doing things your child can’t or isn’t yet able to do.  Compare him to his past self — three, six, 12 months ago. That’s when you see how much he’s progressed. Celebrate everything. Whether it’s your child’s first swear word or having an argument with you that makes logical sense, to eating a new food. All milestones are important and specific and unique to your child. Celebrate them all.

Navigating a diagnosis can be difficult and cause a lot of hard feelings between family members, friends and even parents of the child. There are some who are still going to just assume you’re the cause of your child’s behavior. Some will say they don’t believe in autism. There are also those who won’t agree with your child’s diagnosis and will go out of their way to disagree with you and do whatever they can to tell you how incorrect or wrong you are. You may lose friends and family members over pursuing a diagnosis and treatment.

Do what you feel is best for your child.

A version of this post appeared on Need More Crayons.

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Originally published: March 12, 2015
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