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Diagnosed at 30 My Autism Diagnosis Journey

Who knew you could go 30 years without knowing you were autistic?! I sure didn't know. Self Diagnostic Quizzes: RAADS-R: Aspie Test: Cat-Q: Jennifer O'Toole's Book:


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Hi, my name is Esther and I don't know what I'm doing. But I am a typical autism mom. No way. I'm not a typical autism mom. I'm an atypical autism mom. And what that means is that I am an autistic Mom, I didn't realize that I was autistic until a few months ago, or I didn't get an official diagnosis until a few months ago. But here I am, I'm autistic. And I thought I would share my late diagnosis story as I was diagnosed at 30. And after I had lived a life, really not understanding anything about autism, or really knowing that I was autistic in any way, I just thought I was always a little bit different. I didn't ever fit in quite the way other people did. But I didn't realize that the reason why I didn't fit in, and the reason why I was different was because I'm autistic. So I thought I would share a little bit of that with you guys. And just kind of encourage any of you who might be late diagnosis or who might be considering going through the diagnostic process, and share a little bit about how that was, for me, the first part of my story really isn't my story. It's

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my son, Jason

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So Jason is my second born, he is four years old, and he was diagnosed last March with autism. And he is just a fabulous, awesome little guy. But He always was a little bit different than my oldest son. And I remember just feeling like I was not helping him the way that I should be. And just really feeling like there was something else going on with him. And I sort of had to go on this journey of switching pediatricians of getting him into several different diagnostic processes just to see exactly what was going on with him. And once I realized that most of the things he was dealing with were related to autism, I figured I wanted to get him a diagnosis. And so through much like research, and really just putting a lot of effort into getting him the help that he needed, I was able to

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get him

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his diagnosis of ASD. And it was very complicated. I was relieved because I had finally been able to get him his diagnosis. But then it was also this like soul crushing weight of I can't do this, like how am I supposed to help him the way that I need to when I can barely help myself. And I was just really struggling with, you know, being a mom and trying to keep on top of everything. And at that time, I also had a new baby, which was my daughter, so I think she was about one. And I was just like, this is too much. I can't do this. I'm already burned out. I'm already struggling to keep up with stuff. How am I going to help him. So I kind of just dove headfirst into everything. Autism, I was listening to podcast, I was watching YouTube videos, I was reading blogs, I was reading books, I was talking to therapists, I was getting him in to see all of the right people. But there was just this big chunk of what I felt was going on with him that was missing.

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I spoke to another mom that I knew who was also dealing with her son being autistic. And I said I just don't resonate with a lot of this autism moms stuff, this autism warrior mom thing or this warrior parent, like, I would see other moms posting videos of their kids having meltdowns or their daughter having a seizure or these podcasts. And we're like you need to grieve your child, you need to grieve the child you thought you were gonna have I'm not trying to invalidate anybody's experience. But for me, that personally was not helpful. It was not empowering. And it just made me feel bad for myself, instead of really understanding that this was not something happening to me. It was my son's diagnosis. And my job wasn't to wallow in pity. I was trying so hard. And this other mom said, you know, one of the most helpful things for me has been really connecting

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autistic adults and asking questions to autistic adults. So I started looking like where do you find autistic adults? You know, I didn't know. And I started following the hashtag, actually autistic and I followed several people. And I

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thought, you know, this

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is really gonna be, you know,

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the best way to find information because I really don't know what I'm talking about. I don't know what I'm looking at here. I don't understand autism at all. Like,

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what's a stinney?

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What's a shutdown? What's

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a burnout?

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I had no idea like, what's a fidget I had? I literally was clueless. I was the dumbest person on earth when it came to autism, just feeling like I was stumbling around in the dark. I was just struggling. And I felt really, really, really alone. And other circumstances in our home are just not ideal for my son. And I just kept thinking I have to do something about this. I have to change things. I cannot keep going like this. And so through all of that darkness and that difficulty, I started kind of finding the light and I started finding resources

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that resonated and people

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and voices that really helped kind of reach out to me as I was drowning and pull me out of the water and say hey, you're not alone. And there's hope. And there's good things. And this is not a death sentence for your kid. And it was just like, a weight was lifted. The more I learned about autism, the more and more I remembered my own childhood, and my own struggles throughout life, and just that feeling of otherness that I always had, having weird sensitivities, and I would get hives, and I would have all these like, weird things that my brothers didn't ever have, you know, reading at a really young age, and I would correct adults grammar and vocabulary. And I was very into books and reading, and I would be reading the encyclopedia the dictionary, like anything

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I could get my hands on,

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I read, I was just not the typical

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little girl.

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I was climbing trees, I was, you know, I was out riding bikes with my brothers, I was, you know, I was pretty tomboyish growing up. So because I didn't present like my son, as a child, I felt like, well, I can't be autistic, because I wasn't like Jason. And Jason was just, you know, he was kind of his own presentation of autism, whereas I had a totally different presentation of autism. And then when I started talking to people who were more like me,

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as an adult, I

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realized that they were probably more like me as a child, hyper luksic, reading early, very hyper independent, adventurous, climbing, you know, all those things that Jason wasn't necessarily doing, I did as a child. So I started realizing that I possibly might be

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autistic. And I found

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a book by an author called Jennifer O'Toole. And that book was called autism and heels. And she talked about her process of finding her autism diagnosis. And I realized that we had a very, very similar backstory. So I was always into singing and drama, and I was fairly social. But my connections, my interpersonal connections, were never very deep. Or I would just have one really good friend looking back, probably most of my good friends were either autistic or had ADHD. And so I just kind of had gravitated towards people that were just a little bit different, like I was. And so at some point, I thought, you know, do I really want to find out if I'm autistic, like, I don't really know, if I want to know, I might just rather go on through my life obliviously, and just not knowing and I'll just, you know, worry about Jason being autistic. But then I thought, you know, My son is autistic, I don't want him to be ashamed of who he is. And I also thought, you know, my daughter was starting to show some signs, and I thought, I don't want her to be ashamed of who she is, I don't want her to think that because she's autistic, she's less than other people. Or I don't want my son to think that because he's autistic, that he's less than other people. And I decided that I was going to be a little bit braver, and I was going to go through with the diagnostic process. And in that timeframe, I also found that people who are late diagnosis autistics who seem to be really similar to me and had similar stories. So I

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started doing some of the assessment quizzes, and I'll link some of those below. And those really helped me to see that I was definitely on the threshold for the autism spectrum. And that kind of was a moment where I was like, Okay, well, I

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think it's valid for me to get a diagnosis. And I was able to find a psychologist on my area, Dr. Deb, who is super amazing, she has a lot more knowledge about autistic adults than a lot of other psychologists, she

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does not make you feel less than or judge. She's wonderful. I really, really loved my experience with her.

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And so I did all of these online assessments. And I contacted Dr. Deb, Dr. Deb was the one who diagnosed my son Jason. And she said, I don't

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typically do

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too many adult assessments. But I feel like you have enough valid reason that I will, I will definitely do one for you. I don't know the names of all the forms that she had me fill out, but I filled out several different forms. And then I turned in all that paperwork, and I went in for an in person assessment. I am a professional photographer. And so I have been doing that for many years. And Dr. Deb was like, you know, Esther, that's a very good job for an autistic person. Because you know, you're so detailed, and you can visualize things in ways other people can't, you're, you're amazing. And autistic people are wonderful. And she was just super sweet. And it was a good experience for me and I left and I remember, I told one of my friends and said, You know, I'm optimistic and it was just like a great moment, like I felt. I felt this relief, like, okay, I can finally start accepting myself and building a new structure for my life that is going to help me thrive as an artistic person, rather than fighting against myself and trying to fit a mold that I just

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didn't fit.

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And I felt like I was a little bit less alone. It was very hard for me to just go off of like a self diagnosis basis. And that was just me. I just thought I don't want to be part of a community. That's not really my community. I want to make sure that I belong there. And that I wasn't like an imposter in the community. Like if you're self diagnosed and you feel that piece about it, I 100% support that. It just was not like in my mind I was very much struggling with the imposter syndrome. thing. So I wanted to make sure that I got the professional diagnosis done. So I could have that piece and be like, okay, like, I feel good about this now. And so it's been a really wonderful thing before I had been diagnosed with autism. I had been diagnosed with ADHD. And the doctor also said, He's like, it sounds like you have some OCD symptoms as well. But I haven't been you know, formally diagnosed with the OCD, but I was diagnosed with ADHD. So the other thing that my therapist said is that possibly, because I have both, they sort of masked each other and I struggled more to stay organized, because I was just constantly my brain just goes like 100 miles an hour. So it never stops thinking it never stops, you know, coming up with new things to do, or like, Hey, did you forget about this over here or like, Oh, you got to go over here. My home life is also like pretty chaotic during that time, and it's chilled out quite a bit, but I am a single mom of three. So it gets a little wild here and I'll try to share a little bit of that with you. They're not here today. So I took advantage of the time and filmed a video and wanted to encourage anybody who might possibly be a late diagnosed autistic person or a person who thinks they might be autistic. Your life is not over and it does help to know at least it did help me to know you are not alone. I'm looking forward to sharing more of my journey with you guys. And I thank you so much for sticking around and watching this video. If you have any questions feel free to comment below. And subscribe if you feel like it. Hope that you have a great day and thanks again for watching. Bye

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