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How and Why Should I Get Diagnosed as an Adult?

In recent years, autism rates have skyrocketed, now with one in 68 children having a diagnosis. We’re not completely certain why the rates have increased, but experts believe this is at least partly due to increased autism awareness. That is, autism has always been prevalent in society, but many adults—especially those with milder autism—fell under the radar and have lived their lives without a diagnosis.

But increased awareness is starting to change that. As children are diagnosed, some parents recognize bits and pieces of themselves in their child and wonder if they, too, may be on the autism spectrum.

Maybe you are in that boat. Or maybe you don’t have a child with ASD but have learned about autism and felt it described you. Either way, you may want to find out if you have it. And if that’s the case, read on, friend; we’re here to help you.

Psychotherapy session interview

Why Find a Diagnosis?

Some who have been diagnosed as adults—or searched for a diagnosis—have found themselves facing criticism, ranging from the well-intentioned “You shouldn’t feel like you have to be labelled!” to the harsh “You’re just trying to get attention!”

Of course, the decision to be evaluated is completely up to you. But there are a lot of good reasons to get a formal diagnosis.

  • It leads to better self-understanding. Many with late autism diagnoses explain that they always felt “different” somehow and never understood why or what exactly it was. Though it doesn’t alleviate the emotional pain, it can at least provide an explanation as to why you have always struggled in social situations. It can also help others better understand you; though autism is an explanation and not an excuse, letting other people know you’re on the autism spectrum can help them understand why you do what you do.
  • Symptoms can be properly treated. Many adults with autism have experienced misdiagnoses and therefore treatments that just didn’t work out for them. Getting a correct diagnosis can help you get the treatment you truly need.
  • You may be eligible for services. This could be helpful for employment, educational, and living situations.

Thank you doctor!

Difficulties of Finding a Diagnosis

Autism is not just a disorder that affects kids, and it’s not something people “grow out of.” It’s a lifelong experience. This is well-known among people who understand autism. Even so, most who evaluate autism are more familiar with it in children.

Also, insurance typically doesn’t cover autism screenings for adults, so you may find yourself paying out of pocket. This could be very prohibitive, as screenings can run from $1500 to $3000.

Additionally, adults with autism may not present the typical symptoms, having been squeezed into a mold of conformity over the years. That makes autism harder to detect—but not impossible.

How to Find a Diagnosis

Adults can be evaluated for autism by seeing a therapist, neuropsychologist, psychiatrist, or other specialist who is familiar with adult autism and knows how to diagnose it in adults. That’s the tricky part, so here are a few tips to help you do that.

Young woman looking at laptop

  • Talk to the person who diagnosed your child, if applicable, and ask if they’d be willing to see you. If so, fantastic! If not, they may know someone who can.
  • Find a developmental pediatrician, child psychiatrist, or child neurologist who’d be open to taking in an adult patient. If you go along this route, it may be helpful to bring a parent or guardian, if possible, who can talk about your early development.
  • Talk to your therapist or psychiatrist. If you already see a psychologist or psychiatrist on a regular basis, talk to them about your suspicions of autism. They may be able to evaluate you or, again, refer you to someone who can.
  • Talk to your general practitioner for a referral. Some adults with autism have encountered problems going along this path, as many GPs don’t know much about autism, but it is an option. Schedule an appointment with your physician solely with autism in mind and tell them about your concerns. Make sure you’re armed with reasons for suspecting autism. They may be able to make a referral for you. This course of action may also allow insurance to cover an evaluation.
  • Comb the web. Pathfinders for Autism can be a helpful resource in finding someone who can evaluate you. Choose the “Getting Diagnosed” category and search away. You can also look up local autism organizations and ask if they offer evaluation services.

In the midst of your evaluation, a professional may, of course, conclude that you don’t have autism. But if their reasoning is something silly, like “You have friends” or “You have a significant other” or “You have a job,” keep looking; they clearly don’t understand autism.

What About Self-Diagnosis?

Self-diagnosis is not uncommon these days—especially since getting evaluated as an adult is not easy. In addition, some adults don’t feel the need to be formally evaluated because it’d just confirm what they already know—that they have autism. Even so, there are mixed opinions about it, with most feeling it’s valid but some feeling it is not. That being said, we think a careful, well-thought-out self-diagnosis is perfectly valid. The decision is totally up to you!

To do this, look carefully at the criteria for ASD, particularly that pertaining to adults or women (if you are one). You can also take online Autism-Spectrum Quotient (AQ) tests; however, these should be considered a starting point and be taken with a serious grain of salt, as they are not meant to diagnose.

Whatever you choose to do, we at the Autism Site wish you luck!

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A. Stout received a Bachelor of Arts in Writing through Grand Valley State University, graduating Magna Cum Laude in 2015. In addition to being a passionate autism advocate, she is a member of various fandoms, a study abroad alumna, and an animal lover. She dreams of publishing novels and traveling all over the world someday.