Episode 161: My Autism Diagnosis Story

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Thanks for joining me on this special solo episode of Beyond 6 Seconds.

Today I’m going to talk about autism diagnosis —  or more specifically, how I got my late diagnosis of autism as an adult. I’ve been getting a lot of questions about my experience, so I realized this would probably make a good episode for the show!

If this is the first episode of Beyond 6 Seconds that you’re listening to, then, welcome! I’m so glad you found the show. In addition to solo episodes like this, I also have lots of interviews with neurodivergent guests on my show, who talk about their own life experiences growing up neurodivergent, the challenges they faced, their creative projects and passions, and how they’re driving change to make the world a better place. If you like stories like these, I hope you’ll subscribe to my show so you get notified of all my new episodes. And hey, why not take a moment right now to follow this podcast on your podcast app or subscribe to my YouTube channel? If you’re listening on my website, beyond6seconds.net, you can also sign up for my free email newsletter there and get all my latest episodes before they come out.

And if you’ve listened to this podcast before – thank you, and welcome back! I’m so happy that you find this show valuable and interesting. Your support as a listener and fan of this podcast means a lot to me.

Ok, let’s get to today’s topic. A question I get asked by my listeners a lot is, how did I get my autism diagnosis as an adult? If you think you might be autistic but were never formally diagnosed in childhood, how do you even start to look into getting assessed as an adult? I’ll start by acknowledging that, unfortunately, there can be many challenges to getting an autism diagnosis later in life. Those obstacles increase if you’re a woman, person of color, or part of the LGBTQ+ community, due to a lot of outdated perceptions of autism that persist even among healthcare practitioners.

If you’ve spent some time listening to autistic communities online, you may have heard the phrase “self diagnosis is valid.” The barriers to formal diagnosis are one of the reasons why we say that. Formal assessment and diagnosis are just not accessible to everybody – so if you’re unable to get one due to cost, time, lack of qualified providers in your area, or any other reason – that doesn’t mean you can’t be autistic. There are probably specific situations where you may need a formal diagnosis, like to access certain disability-related services in some countries. I’m not an expert in that at all, so I can’t really speak to that. But if you’re mainly just interested in understanding yourself better, or finding ways to support your needs that work for other autistic people and might work for you, or you just want to feel less alone after feeling different for your whole life – and you find yourself relating deeply to a lot of autistic experiences, then you may very well be autistic, even without a diagnosis, and that’s ok.

For me, I really wanted to look into an autism diagnosis for myself, and I was fortunate enough to find a practitioner that helped me get assessed and get that diagnosis.

Before I share my story, I also want to say that this is not meant to be medical or professional advice of any kind. It’s just my own personal experience. Your experience may vary. Also, in this episode I’m going to use the words “practitioner” and “provider” interchangeably to describe professionals who do autism assessments.

So, what prompted me to look into an autism assessment for myself? I cover that in my last episode of 2021 where I talk about pivoting the focus of this podcast towards neurodiversity. I’ll link that episode here in the show notes if you want to learn more about my own personal “why.” But for now I’ll say, I had some experiences and realizations last year that made me strongly suspect that I was autistic. I even wrote down a list of all my autistic-sounding traits from childhood and adulthood, based on what I had learned recently about autism from autistic people sharing their lives and experiences. I filled up a whole page with that list. But still, I wasn’t sure, and I felt I needed a formal assessment for some certainty and personal understanding.

At that point, I decided to search for a practitioner who could do an autism assessment. How do you find someone to do that? I’m based in the United States, so I’m describing this process from a US point of view. One way that people do this is by asking for a referral to a psychologist or other psychology professional who is qualified to assess autism. This referral usually comes from a doctor, like a primary care physician, or another psychology specialist (if they’re not qualified to do autism assessments themselves). I’ve learned that not all psychology professionals can do autism assessments, but often they can refer you to someone who can.

For me, I didn’t go with a referral. Instead, I went looking online for a provider, which may be another option for you too. I used a directory of providers listed by country and by US state. Unfortunately, that directory is no longer online, but since then I’ve found a similar directory on another website. I’ll post the link to that directory in the show notes of this episode. The directory I used, and the directory I’m linking below, were both crowdsourced – so autistic people were adding their provider recommendations into the directory – it’s definitely helpful, but you still have to do your own due diligence with any providers you’re considering.

On that website, I found a few psychologists licensed to practice in my state who had experience assessing autistic adults. Now in the US, licensing happens by state – so you’ll need a practitioner who is licensed to practice in the state where you live (if you’re meeting with them remotely via telemedicine) or you’ll need to be able to meet with them in their physical office. Fortunately, some states have agreements to recognize each other’s licensing right now, so practitioners licensed in one state may also be allowed to practice in other nearby states. It varies by state, and the laws keep changing. The takeaway here is — even though telemedicine has become much more common over the past few years, your geographic location may still limit your practitioner choices, at least here in the US. I recommend researching practitioners in your state first, if you’re in the US, and then in nearby states if you can travel to their physical office, or confirm with them that they’re licensed to practice in your state (if you want to do remote visits from home).

I looked at the directory website, wrote down the contact info of some nearby providers, then did some more research on them. I looked at their websites. Many providers have their own websites. I read about their experience as described on their websites. Do they talk about their experience assessing autistic adults, specifically women? Experience with women was important to me because I’m a woman, and autism can present differently in women, so I wanted a provider who was knowledgeable about that. Experience with adults was important because, unlike with young children, the diagnostic tests for autism have to get under a lifetime of masking and coping skills. Also, some tests are used more commonly with children than adults, and vice versa. If you are LGBTQ+ or a person of color, it can be really helpful to find a practitioner with experience assessing autism in those adult populations. This might be described on their website – if so, great! If not, or if they don’t have a website at all, you don’t have to rule them out just yet – you’ll just need to contact them directly for that information.

At this point, after my online research, I had a short list of providers I wanted to contact. I emailed them to ask for more information about getting assessed for autism as an adult. Many providers offer a free consultation, like a 20 or 30 minute phone call, where they can tell you about their assessment process and answer your questions. If that’s an option, I recommend doing that short call. I know many of us autistic people aren’t so fond of phone calls, but I found it valuable to talk to the person on the phone who would be doing my assessment, and get all my questions answered.

So, what do you talk about during that initial call? You probably want to ask about what the process is like: how long does it take, what’s the cost, do they accept your health insurance, what kinds of diagnostic tools do they use, can you do the testing in their physical office/remotely (and if you’re out of state, are they licensed to do it remotely with you?). Those are just a few examples. Regarding the health insurance question, unfortunately many providers in the US don’t take health insurance for adult autism assessments, although you may be able to pay up front and then submit a claim for reimbursement from your health insurance after the fact. The provider can tell you more about their process for that. It can be a big expense. This is another reason why self diagnosis is valid, because the expense alone can make a formal diagnosis inaccessible to a lot of adults.

Here are some other questions you can ask as well:

• What’s your experience assessing adults for autism? How about autistic women, people of color, or people who are LGBTQ? (if that describes you, I recommend asking specifically about those populations.)
• What methods are you using to keep up with the latest autism research? Research evolves all the time, you want someone who keeps up with things and doesn’t have old outdated views of autism.
• Which autistic voices do you listen to or recommend to your autistic clients? As part of my final assessment report, my practitioner gave me a short list of resources to learn more about autism in women, featuring videos, books and articles by autistic women.
• Once you diagnose someone, what do you typically recommend as next steps?

Then, listen to the answers. If they don’t have experience, dismiss your concerns, mention autistic stereotypes (like “you can’t be autistic if you …” Fill in the blank with anything), or try to pressure you into their therapy program after diagnosis, for example, then they may not be the right practitioner for you to work with.

I did my phone calls and found a practitioner I wanted to work with, who had a lot of experience assessing autism in women. She used several diagnostic tools with me, in the form of online questionnaires that I completed on my own time, and several hours of structured interviews. She interviewed me over the course of a few days, so thankfully it wasn’t one long session. I also had the option of asking a relative to complete some of the questionnaires about me, to get an additional perspective – although my practitioner said that if there was a conflict between our answers at any point, that she would give more weight to my answer. At the end of the process, I got a long report about my test results, diagnosis, and suggested next steps and resources to check out. The whole process from start to finish took about a month. I think that’s pretty quick from a lot of other autism assessment stories that I hear from people.

So, that’s my autism diagnosis story. Your experience may vary.

One thing I wanted to mention, if you do decide to look into getting assessed for autism: the assessment process and getting a diagnosis (or getting assessed and NOT getting an autism diagnosis at the end) can bring up lots of feelings – validating, joyful, painful, unexpected, conflicting, confusing, and ever-changing as you realize new things about yourself and process the assessment results. A good practitioner will realize this and offer you some resources and suggestions for future course of action, like therapy for example. But for adults, sometimes there’s not a lot of support that’s helpful and easy to access. Many times there is no clear course of treatment that follows after an assessment and diagnosis.

If you can, have supportive friends or family who you can talk to during and after the assessment process, to help you process your feelings. Share your feelings with people you trust. Journal, if that helps. Ask for the support that you need. Be kind and patient with yourself.

An autism diagnosis is just the beginning, in a lot of ways. It can be a new beginning, and you may need a lot of time to really process what it means for you. I got my diagnosis several months ago, and I’m still processing what it means for me – and I probably will be processing that for a long time.

Good luck, and I wish you all the best. If you pursue an assessment, I hope it brings you self-compassion and self-understanding.

If this episode resonated with you, then please share it with a friend who might also find it valuable! You can share my website link, beyond6seconds.net, or share a link from whatever app or website you’re listening from right now.

If you don’t have a specific friend in mind to share it with, then hey, you could always share this podcast on your social media! If you tag me on social media @beyond6seconds when you post, then I’ll be able to write back and say thanks!

I’m really passionate about getting these important stories about neurodiversity out into the world. Every time you share my podcast, it helps get these stories to people who really need to hear them, who feel less alone by hearing them. Sharing is an easy way to help make the world a little brighter for people – and you can be a part of that. So if you do decide to share, thank you!

I love hearing directly from my listeners too! Did this episode help you? What topics should I talk about in future solo episodes? Reach out to me on social media or my website, beyond6seconds.net, and let me know!

Well that’s it for today. Take care and thanks again for listening.

Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at beyond6seconds.net. Until next time.