My Late Autism Diagnosis Journey


Hey everybody, NeuroRebel here I am back this week. And recently I asked you guys what topics you wanted me to share or cover on the channel. And y’all had a lot of requests talking about diagnosis. And last week we talked about self-diagnosis this week, I’m going to share with you some information about my own personal diagnosis journey and what that experience was like for me personally.

[00:00:27] So we’re going to dive in.

[00:01:06] So I was diagnosed autistic at the age of 29 because I was actually struggling from autistic burnout. However, I didn’t know, this was something that had a name at the time. I was getting sick with a familiar illness that has actually come around multiple times throughout my life. It has neurological symptoms.

[00:01:27] I feel like I’m swimming through soup. I am a shallow, empty shell of myself and I get sick to my stomach. I stopped eating and I deteriorate and have migraines amongst other things that are really not pleasant. Uh, and so, you know, the doctor’s appointments were exhausted going to the physical doctors appointments.

[00:01:49] Eventually I was referred to someone to talk about my anxiety and mental health because the doctor was out of ideas. And I started my diagnostic process for me, the beginning of my diagnostic process started with my physician, giving me a business card for the local autism society and me calling them and asking for references of doctors who had experience diagnosing adult autistic people, because that really does matter. If professionals are only used to working with children, they are- may not -say may not – have the experience necessary or be familiar enough with adult autistic humans to diagnose autistic people. And I have heard this over and over again because autistic people, we change as we grow and mature. We don’t look like we did as children when we grow up and we age.

[00:02:49] So that was step one on my journey was calling these doctors and asking if they had experienced diagnosing autistic adults. Step one.

[00:03:00] Step two on my journey was preparing for the appointment. I typed up, wrote up, gathered a bunch of notes and, and I also gathered baby videos and footage.

[00:03:14] Very fortunate that I was a well-documented child and had plenty of footage to share with the diagnosing doctor, because they do need to verify that you have always been the way you are. You have always been autistic because it is a lifelong neurodevelopmental condition. You’re born autistic, you die autistic. You’re always autistic.

[00:03:34] Yes. Uh, and so they need to verify this. So having baby videos was very helpful. I also had, uh, people in my family that I provided phone numbers for. So the doctor could do interviews with people who had known me in various stages of my life throughout my lifetime. Did able to verify the list, the paperwork paper, 10 pages that I came typed with, with my notes.

[00:03:58] There were two appointments. The first appointment was me, me and the doctor going over my notes and the videos and me giving over a phone numbers. For the people, my doctor was going to call to interview to learn and talk about me. Uh, so that was appointment number one.

[00:04:16] And I don’t remember exactly how long it lasted. I want to say it was at least an hour, maybe two. It was a bit of a lengthy appointment. The second appointment was shorter. Yeah. Uh, I went home and I feel like there was a couple of weeks in between where the doctor made phone calls, uh, called family members, made notes, typed up a long written report, uh, and then called me back into the office a few weeks later, uh, where we, then I came in and reviewed the report.

[00:04:41] I was handed this, you know, multi page document with lots and lots of information, lots of private information, uh, and. I don’t even have that document with me because I was like, Oh, I just feel so naked reading this. Uh, but basically, you know, there was just summary of everything that had been in the interview.

[00:05:00] Everything the doctor found in our interview together, everything based on notes, all of it together summarized in one really long heaping document of my history. Then the findings that I am autistic and I was also diagnosed with social anxiety. Uh, at the same time. And I was really in denial about the social anxiety for awhile, not the autism.

[00:05:25] That was hard for me to deny it. I already kind of accepted that at that point. Um, and the social anxiety. It was important for me to accept that though. And most things are important to accept, but the social anxiety, once I accepted it, I got on the path to start getting over it. And I’m feeling a lot better now.

[00:05:41] I don’t know if I would say I still have social anxiety, although I don’t know if I get to remove that label from myself. I think, I don’t know how that works, but anyway, that is my experience being diagnosed autistic at the age of 29, almost 30 years of my life not knowing exactly why I’ve always been a little bit different.

[00:06:02] Alrighty guys, thank you so much for hanging out this week. If you liked this. Video and wants to see more. Don’t forget to scribe, turn on notifications so you never miss a video and share if you found this content helpful and think someone else could learn something for it. Because my number one goal is always to create useful content and I hope I’m hitting the mark.

[00:06:22] Alrighty guys. Thank you so much. I’ll talk to you next week. Bye!

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