The Other Autism

Life After Late Autism Diagnosis With Melissa Elaine

July 16, 2023 Kristen Hovet Season 3 Episode 2
The Other Autism
Life After Late Autism Diagnosis With Melissa Elaine
Show Notes Transcript Chapter Markers

Melissa Elaine, a music industry professional in California, shares the lead-up to getting an autism diagnosis just this past January and what life has been like ever since.

Melissa shares how past therapists chalked up her challenges to trauma and C-PTSD, dismissing her and her family's well-informed suspicions that she may be autistic. She also shares her experiences of going nonverbal, her main autistic attributes as a child, and what aspects of life have changed since her late-autism assessment and identification.

Connect with Melissa on LinkedIn.

If you'd like to know more about topics discussed in this episode, check out:

"Females and Autism/Aspergers: A Checklist" by Samantha Craft

Unmasking Autism: Discovering the New Faces of Neurodiversity by Devon Price

So You Think You're Autistic: A Workbook for the Confused Person Who's Trying to Figure Things Out by Samantha Stein

Episode outro music: "Hidden Lines" by Ooyy

Theme music: "Everything Feels New" by Evgeny Bardyuzha.

All episodes written and produced by Kristen Hovet.

To submit a question to possibly be answered in a future episode, please email kristen.hovet@gmail.com

Become a patron on Patreon!

Buy me a coffee!

Kristen Hovet:

Today I'm speaking with Melissa Elaine, a late-diagnosed autistic music industry professional from California. Before I share my conversation with Melissa, I'd like to thank the newest sponsor of the Other Autism podcast, Donna. Donna, thank you so much. For anyone else interested in becoming a sponsor to help keep this podcast going and growing, please check out the show notes for links that say support the show or become a supporter of the show for as little as $3 a month. If you would prefer sending in a one-time show of support, there's also a link in the show notes to buy me a coffee. For the price of a Starbucks coffee, you can support the podcast and help keep the number of ads to a minimum. Also, I'd like to announce that I just created a Facebook page for the purpose of sharing new episodes and Other Autism-related news and also to give a space for listeners to post and chat with one another. Search for The Other Autism on Facebook or follow the link in the show notes. You might notice that my audio sounds a bit different in this episode, not right now, but in my conversation with Melissa, and I don't know what happened. If there were some changes to the software I'm using, I haven't been able to replicate the problem. The audio just sounded different, almost like warbly. I was able to fix it a little bit, but it's still, I couldn't make it the way it normally sounds, so I apologize in advance. Hopefully it doesn't bother you too much. This hasn't happened in any subsequent recordings, so hopefully this is just a one-time thing that doesn't happen again. Okay, now please say hello to my guest for today, Melissa Elaine.

Melissa Elaine:

I'm Melissa Elaine. I'm 31 years old, born and raised in the San Francisco Bay Area, currently based here, but I will actually be moving to the LA area in a couple of months. I am an artist manager and a music industry professional. Currently I'm managing one artist. This is a career pivot for me. I worked in the salon industry for about eight years prior to this, so I'm finding my place overall, but I do also enjoy songwriting. That's part of the move to LA is to support the music industry career because I'm more on the business side of things.

Kristen Hovet:

You reached out to me because you wanted to share your diagnosis story. So if you could just kind of outline that process and your experience.

Melissa Elaine:

Kind of giving a little bit of back story to it, when I was a child, my babysitter had what would it be considered like level three autistic daughter, and I remember understanding her in a way that others around me didn't seem to understand as intuitively. And that experience was especially highlighted when, later in my 20s, I became a nanny for a very similar situation, mostly nonverbal young girl on the spectrum. Again, I would understand why she was going and running off somewhere or why she was having a meltdown and other people would be trying to force her to sit down or force her to do something, and I was like, no, no, like just if you let her run off, she's going to get her iPad or going to get her thing she left in the other room and she'll come back on her own and you're not going to like force her to have a meltdown. So these things kind of happened to me. I quit that job in 2018. Fast forward to 2020, I am recommended this random video. I wish I could remember the YouTuber, but it's an autistic woman YouTuber going through this list of what it's like experientially as a woman on the spectrum, and I think there's like 100 items on this list, like a 40 minute video, and I was interested because of the young girl I had just worked with and wanting to learn more about it. So click on this video. I'm watching the video and I'm going through every single item and I'm like, hold on a second, that sounds like me. That sounds like me. Like 90% of these things sound like me. So at this point, I'm convinced, obviously, this is summer of 2020. So everything is remote, shut down, and I tell some people in my life, my partner, my mom, a therapist that I was working with, and we considered getting me assessed. But we were also about to be moving and we decided to put that on the back burner. So I had done a lot of research because I started, that basically became my special interest. I started watching all these videos about getting assessed, getting diagnosed, what that means, what that's like, and I decided that I wanted to research someone who was experienced in diagnosing adults, experienced in diagnosing highly masking people, in order to really get the best outcome, regardless of whether or not I was on the spectrum. So we kind of put that on the back burner. Now fast forward to 2022. I actually had a really, really rough mental health year last year. At one point was having meltdowns. I don't even know how frequently, but was having really, really, I can't think of the right word I want, was just having really, meltdowns that were impacting my partner really negatively, to the point that I was like throwing stuff, pushing stuff over, just couldn't control my emotions and couldn't regulate my emotions, I should say, and that was scaring me. I was like, okay, I'm 30 years old, I should be able to regulate myself. Why is this still so difficult for me? I am still in this group therapy. It's focused more around codependency and narcissism, but we have weekly check-ins and I was sharing about one of these meltdowns. The therapist who runs the group has experience with autism and ADHD and she said this sounds like an autistic meltdown. Have you ever considered that you might be on the spectrum? And this was the first time that a professional validated my thinking, validated that I thought I was on the spectrum. I had told two other professionals I had worked with and both of them were like, what? No way, or it's just your trauma. It's not autism, because I do also have CPTSD. I had repeated traumas throughout childhood, so they kind of just lobbed it all off onto that. Of course, doing my own research, finding that so many autistic children also have CPTSD, because we tend to be more highly traumatized, but that was really the spark that made me go, okay, I think I want to go ahead and get this formal diagnosis, was sharing it with my spouse and telling him I think it's time. Reached back out to the professional that I had spoken to in 2020, and he was still doing assessments. I had to wait a couple months, which was longer than I would have preferred, but shorter than a lot of stories I've heard of what people have had to wait, and in the meantime, I think it was actually in November of 2022 that Samantha Stein, she's on YouTube as Yo Samdy Sam, she released this workbook called So You Think You're Autistic. So I got that workbook and did that for those two months to tide myself over from the anxiety of waiting, but also it was monumentally helpful to the assessor. I sent him a bunch of screenshots, pictures of the pages of the workbook and things I had filled out about myself, and he said that it was really helpful in the assessment process. There was quite a few things in that book that I had journaled about that we didn't get to talk about and I don't know if I would have been seen in my fullness as an autistic person had it not been for the pages of those workbooks. So I got the official diagnosis. That was just this January, so just like six months ago. And I remember right after the final appointment there was three appointments going in and telling my partner and saying, guess what, I'm autistic. And he's like congratulations. And I was like, yes, actually it is. It feels celebratory because so much of my life not only makes sense, but having, in a way that I don't particularly enjoy, but having that validation did help.

Kristen Hovet:

Awesome. Thank you for sharing that. And that kind of leads to the next question, which is: How did you initially feel after that identification and then has that changed at all?

Melissa Elaine:

I would say I initially felt like a light bulb turned on and things just made sense, like knowing, or I should say suspecting, that I was on the spectrum made everything make sense, almost everything. I now know that I also have ADHD, so that kind of explains some of the other things that I was dealing with that weren't necessarily explained by autism. But, yeah, it made most of my life make sense, and so I felt a lot of relief. However, I am someone, I'm still really deeply working on, like self trust, and so there was always a part of me that's like well, what do I really know? Am I really? I am so deeply empathetic. Maybe I just empathize with all life experiences, and I empathize with this one, too, because I tend to be someone that can see every side of a story, and if one person's complaining about something, I can see the other side, and maybe it's just that. So there was a lot of questioning with it as well, and I would say that the thing that has shifted is the questioning. I don't question it anymore, which is really helpful for me.

Kristen Hovet:

I know a lot of people identify with that and the imposter syndrome. I know when I put out that survey for season three, everyone's clicking on imposter syndrome. That was one of the number one. I think people have that to varying degrees and definitely wanting to question the assessor even. I feel like that's a very autistic thing, like even the fact that we're doubting it so deeply. How has life changed for you after being diagnosed or identified as autistic?

Melissa Elaine:

I think one of the biggest ways it has changed is the dynamic between my partner and I. He's very scientifically minded and he likes empirical evidence. He was also someone that wasn't super supportive of self-diagnosis. He also wanted a professional opinion. At the same time, like I said, I was having a very, very rough mental health year and I knew something was going on with me. I wanted to rule out the suspected autism before anything else. There was also an aspect of like, we're going to tackle this whatever is going on. Now, having the diagnosis, we're tackling it together. We are more seriously, and maybe not even more seriously, but more tangibly and in more measured ways able to attempt to organize our lives, organize our relationship, organize boundaries around these things. He doesn't take it so personally if I'm going nonverbal or I suddenly don't want to be touched or I'm suddenly pushing him away because he knows it's not about him. It's about that I've had this thing all my life, that I never learned how to manage and that I never learned what my boundaries were with it.

Kristen Hovet:

Could you speak more about, you mentioned going nonverbal. What does that look like for you?

Melissa Elaine:

Yeah, it's interesting because, so my mom's also on the spectrum. She's not formally diagnosed but we know now for sure that I am, that she is. I'm level one, she would be like level two and so growing up we would go nonverbal together. It was great, we could just be together and not have to talk or not have to use words or use non-word words or noises, and that was normal for us. It has been difficult growing up and being around people that don't have that same intuitive, nonverbal language. It's definitely been a struggle and I realize now, looking back, there's been so much of my life where I forced myself to be verbal and then would go home at the end of the work day and just fully shut down, not talk to anybody, not want to go anywhere, do anything, see anybody. I am an introvert but now, knowing what I know, there was a lot of aspects of just being in a shutdown. I was in front desk management in salons at the end of my career there and talking to people all day, every day, back to back to back, was so overstimulating. Yeah, what that now looks like, sometimes, especially with my spouse, if he says something to me, I just might not respond at all and he'll kind of know like, okay, she's going to take her time or she'll get back to me later. Whatever the case may be, it might be me sending a text instead of saying something verbally. We've even discussed taking ASL classes together to try and support having a form of communication when I feel nonverbal, because I do feel like I'd be able to do things with my hands, like the words are in my brain, I just can't get them out of my mouth. We're kind of exploring some strategies with that as well.

Kristen Hovet:

I'm hearing a lot of different experiences where people were labeled as shy or very quiet and it's just almost like a spectrum of becoming nonverbal and now identifying with that, even myself, it's like I'm not, I don't feel shy, I don't feel quiet, but I definitely feel overwhelmed. So when you've told others, so friends, family, about your diagnosis, what have their responses been?

Melissa Elaine:

Thankfully, mostly very supportive. I am very thankful and blessed that I have created community around me that doesn't really question me, at least not around things like this like hey, I have this formal diagnosis, they're not going to question that sort of thing. There have been a couple of experiences where I told someone and there was like, what, but you don't seem like it, aren't we all a little autistic? And I was like, oh God, this is what people were talking about when people say this stuff like that is wild to me. And it was someone that like is a spiritual leader, I'll put it that way, is a spiritual leader in our lives. So that was really like, oh, okay, he needs some education on what it actually means. And luckily we already had a relationship. So I was kind of able to tell him like well, very much, no, we're not all a little bit autistic and like here's what mine looks like for me and why you might not have seen it is because I'm very highly masking and my special interests throughout my life have been psychology and language. So a lot of my interests have lended to my masking and he was able to get it after that, which really helped. There was one other experience that was less successful, I would say, where I was seeking nutritional support for my autism and ADHD. So I told her that I had these new diagnosis and was looking for support in that, and she recommended chelation and it looks like you know what that is, but in case anybody doesn't, it's the process of removing heavy metals from your system. The theory is that the heavy metals are causing or contributing to the autism. Thankfully, I'm not someone that just takes the advice of people without doing my own research and thankfully my spouse works in a field where he knows about medical research. And so we looked into it together and saw all the research that says no, this is, unless you actually have heavy metal poisoning, you should not do this treatment. So I didn't go forward with her, didn't see her again, but I was really, really disappointed that that was the immediate recommendation from a nutritionist. It wasn't anything with, hey, let's support your diet. Let me ask what are your eating habits? What are your life habits? It's straight to that. It has killed people. It's really harmful treatment.

Kristen Hovet:

Yeah, and a lot of the people who recommend that are the ones who think that autism is linked with vaccination and other things like that. You mentioned the list that you first came in contact with and it was like a 40 minute video. So what were some of the things that really stood out to you from that?

Melissa Elaine:

The biggest one was my intuitive, relating to people who were more higher needs on the spectrum, in ways that it just made sense to me and it confused me that others were confused by it and that was something in that video that they talked about was relating to other people with autism that I was able to look back at my life and been like, yeah, I really deeply relate to these people. Some other traits for me was even things like in childhood, if my face got wet, I would have a meltdown, I would have a fit. I still don't love my skin being wet, but I would fully go into a meltdown as a child, especially if my face got wet. I also had this really particular way of putting my socks into my shoe. It's kind of hard to describe without a visual representation, but suffice it to say the little extra piece of fabric that kind of hangs over your pinky toe. I would pull that really tight over my foot and then very carefully slip my foot into my shoe and if that came undone in any way, everything stopped. I had to fix it. I don't care where I am, what I'm doing, in the middle of the crosswalk on a busy street, I don't care, I'm fixing this thing, and so things like that made a lot more sense. Eating foods in a specific order. I really like to eat all of however much I want of one thing and then move on to the next thing, and then move on to the next thing, and my dad was really unsupportive of that. He was like don't eat all your chow mein before you eat your veggies, eat some veggies too, and things like that. Kind of more lifelong ones have definitely been like picking, tapping, tightening and releasing of muscle groups, vocal stims, difficulties with interoception, proprioception, clumsiness, repeated bruising or spraining my ankles, being bad at sports. Even as a teenager, I sucked my finger until I was 14. And the only reason I stopped is because I was getting braces and they told me if you don't stop, the braces won't do anything, so I forced myself to stop. Looking back, things like that were pretty clear markers, in my opinion, now knowing what I know.

Kristen Hovet:

Definitely those are more like stims and you were probably told it was like a bad habit or something like that. I know we all tend to have those and we grow up feeling pretty ashamed about them, actually, and embarrassed, so it's too bad. What was school like for you?

Melissa Elaine:

I definitely always felt like an outsider in some form or another. My school experience is a little all over the place in some good and not so lovely ways. I moved around quite a lot, even though I've always been in the Bay Area, I've moved. By the time I was 20, I'd moved like 15 times. I wasn't ever in one school for more than, I think, three years, which I think in a way almost helped because I felt like an outsider because I moved and I didn't know people more than I felt like an outsider because of who I was. I'm very grateful for that because I already have enough questioning of who I am and what I do. At least that was one area that didn't add to that feeling. But K to 5 was great experientially because I really loved school. School was where I got to enjoy my day. Home was not particularly a safe place unless I was just home alone with my mom, and so I loved going to school. It also felt good because I was quote unquote smarter than a lot of my other peers and classmates. My mom did a lot of education with me at home and one of the main ways I would play as a child was actually doing educational workbooks. I loved doing things like that. I had books about math and science that I would read over and over and over again, books about language and I think idioms are what they're called, like it's raining cats and dogs, things like that. So I would learn so much at home that then school was easy. So I loved that. But then, after one of my primary traumas, I was put very briefly in foster care and then placed with my grandma and that period of time school got a lot more difficult. For a time it was very helpful because I got to finish the school year as homeschool when I moved in with her. But then when I went back to traditional school, it got a bit harder. In eighth grade I moved back with my mom again and it got even harder. She had moved to an area that was a much higher income school district. The schools were much more rigorous and I was no longer quote unquote smarter or even as smart as my peers. I was placed in a math class that was like a grade below my level and felt really demoralized by how difficult things were getting for me. In 11th grade I actually chose to go to independent study high school and, thankfully, my mom was supportive of that, and so in junior and senior year of high school my life was really self-organized. I was also working almost full-time. I've been working since the age of 14. So I was almost operating as an adult, had my own car, paid for everything for myself except for living at home. I didn't pay rent from the age of 16. It got easier in a way that I got to organize my days, but I also stopped taking college prep level classes. So then, when I did go to junior college, things got really hard again because I wasn't fully prepared.

Kristen Hovet:

I have notes here about, you mentioned trauma. I don't want to ask anything that's going to be challenging or you don't want to answer, so feel free to just pass. But now that I've been in the community for, I guess, going on almost five years now, I've heard a lot about trauma and a lot of people mentioning interactions with narcissists, either in their own families or people marry into the family. So I'm wondering if you have any insight about where that trauma originates for so many autistic people?

Melissa Elaine:

A lot of what I have come across that resonates to my experience is that because we are so literal and kind of one track-minded, a lot of the time we're more easily manipulated. I can say for me, especially because of my deep empathy and being able to see all sides of a situation, I make a lot of excuses for other people, so that has definitely lended to some of my experiences. Part of it is also just having a foundation of abuse and trauma. My dad was abusive to my mom and I, and so I didn't know another way of living. We moved from that home into another abusive situation in a different way, but it was still very unhealthy, which is why I was taken from the home and put into foster care and then my grandma's. And so living with my grandma was really wonderful because that, now looking back, was the first experience I had with living with an adult who was parenting me like an adult, who had clear boundaries. This is what you can do. This is what you cannot do. I hated it at the time because my mom is completely lackadaisical. I often say my mom is my best friend, my grandma is my mom. My mom kind of always trusted me to do whatever I wanted, which I love, and it made some things difficult because there weren't enough boundaries. In some ways, that allowed me to get myself into situations that were abusive, harmful. My first boyfriend was very abusive. He also was self abusive, I can't think of the term right now, but he was not a healthy person and my mom allowed him to live with us and, looking back at it now, the amount of healing I've done, the amount of therapy I've been in, I've been in and out of therapy since I was 10. I now see how unhealthy that was, but I had no idea how bad it was in the moment. So I think there's often this way that we just sit through things, we just grin and bear it, we just push ourselves to get through the day, no matter what. If it wasn't for the amount of support and therapy I've had on and off throughout the years, the amount of having somebody go hey, I think that's not right. Hey, I think that's abusive. Hey, I think you're being taken advantage of here. I've also been taken advantage of by employers. My first boss paid me like an independent contractor when I wasn't. I was an employee and I got into it with the IRS because of that and it impacted my life for seven years before the case was finally settled in my favor, that I did not in fact need to be paying quarterly taxes and have all this back tax money. But things like that that very deeply impact us for years and take a lot of support to heal or undo.

Kristen Hovet:

I'm hoping that with the increase in diagnoses some of the sort of intergenerational trauma will stop because we'll have more awareness. And you were saying your mom's autistic, and so I feel like undiagnosed autistic adults are often targets for unsavory individuals and so even before you're born, they're attracting all these manipulative kind of bad people into their lives and so that starts the cycle. It's unfortunate. And then we never learn the tools to like, as you were saying, recognize that. So I feel like that's a huge area of like growth in the community as a whole. Going back to growing up as a child and teen, what types of supports do you wish that you had, knowing now what you know?

Melissa Elaine:

The thought I was having when you were speaking kind of lends to this question as well, which is now, knowing in my life directly, and also kind of hearing stories about young people who know they're autistic, it is so healing for my inner child to see these environments where they are so supported. They have so many strategies to meet their needs and to operate in the world in a way that's healthy for them, in light of having that diagnosis and support. One of the biggest supports of my life, of course, would have been a stable home, but that's not really something that would have just happened had I had a diagnosis. I do think that, if I had known, if our family had known when I was younger, even just having that education of what it means and what I might be able to do in support of that, could have saved me a lot of trouble, especially socially. There was a period of my life where I was definitely a, almost like pathological liar. I would say whatever I had to say to someone, to whatever I thought would make them like me, and so I think part of that was some PTSD stuff, but part of that was the level at which I wanted to mask. I just wanted everyone to like me and I wanted everything to be okay all the time, and what that looked like for me, instead of taking care of my needs, was saying whatever I had to say to get people to like me so that they'd be okay with me, so that they wouldn't yell at me or be upset with me, rather than taking care of my needs by maybe taking space or just recognizing that some friendships or people weren't healthy and I didn't need to be around them or aim for their approval all of the time. There's a little story that happened with my friend and her child who's on the spectrum and their birthday is coming up right now, but their next birthday, next July, they are going to Disneyland. And they came into my friend's bedroom and like, hey, mom, can I ask you a question? She's like yeah, and the kid says, what snack do you think we should eat in the car? And my friend's like, for what? Oh for on the way to Disneyland next year, when we're driving down there, and my friend is like, I don't know, like why do we need to decide this now? This is in a year like, who cares, you know, let's think about that later. But what I said to her when she's telling me this story is like, I don't know if you see this as a parent, because obviously it's a little bit annoying to be like interrupted, asked a question that's not immediately relevant, I get that. I might have felt annoyed, too. From the outside looking in, what I see is a household that is so supportive of this child and their needs, that they're able to think a year in advance about the most minute details, and that was so beautiful to witness and I think it helped my friend as well to kind of like oh, I never thought about it like that, because even to get to witness this autistic child being in a supportive home is really healing for me, yeah.

Kristen Hovet:

That's awesome. What are your top three autistic traits that you love the most?

Melissa Elaine:

I would say, ultimately, I love my empathy. There are ways that it has lended me to being in difficult situations or staying in harmful situations too long, but at the same time, I relate so deeply to so many people, and not just people, but so many beings. I relate to animals, I relate to plants, I relate to the earth, and I wouldn't trade that for the world. I had a conversation with my grandma a couple days ago and she was telling me that she realized that her dog had opinions or preferences, and I was like what? How have you not known that your whole life? That just makes sense to me. Of course animals have agency, the same way we do. They have preferences, opinions, likes, dislikes, like, of course. So I would never want to get rid of that level of empathy. I do also really love my physical sensitivities. Although there's a lot of overstimulation that happens, I love the way that it is encouraging me to slow down in my life and to savor everything. If I was to really go at my natural pace, supporting my physical sensitivities fully, I think I would feel so so deeply and I think that's really lovely. I wouldn't want to change that. And the last thing I would say is kind of like pattern recognition. It lends to my love of music, it lends to my love of language. Those are things that I, again, would never want to give up or change.

Kristen Hovet:

When a lot of people receive their diagnosis, they have this sort of progression of like phases of, you know, they have some mourning usually about thinking back in their past and how hard they've been on themselves. So is there anything you've changed in terms of like concrete changes to your life? I know you mentioned like career change. Or any even like thought processes that you've consciously tried to change as a result of this knowledge?

Melissa Elaine:

I think a lot of my changes have been more centered around my ADHD because I have always felt at war with myself because there's a part of me that seeks this high level of stimulation and new experiences and new flavors and tastes and smells, and then gets so overwhelmed by it that I go and shut down and isolate. And so now supporting myself around my ADHD is allowing me to slow down with my autism in the ways that I need to. The other thing that comes to mind around this question is kind of something I would say I've been working on all my life. One of my other lifelong special interests is around like religion, spirituality, kind of self-help, self-healing, all of these types of things. So there is perhaps, more intuitively or more naturally, a level of self-compassion that has increased. I certainly wouldn't say my self-criticism is healed by any means, but perhaps it's not so loud and so urgent. I am able to remind myself to slow down. I'm able to remind myself that it's healthiest for me to slow down, that my naturally quote unquote slow pace is what is right and correct for me and that that's okay and that it is what is most sustainable. There's so many ways in which I tried to force myself to go at the pace of the world, or go at the pace of what I was told it should be, and then burnt out and then shut down, and then quit that job and got another job that was the same thing.

Kristen Hovet:

What is a myth or stereotype about autism or autistic people that bothers you the most?

Melissa Elaine:

It is around autistic people needing to be healed or somehow healing or getting rid of autism. That bothers me the most because those are the beliefs that do the most harm to people, and especially people who are always nonverbal or mostly nonverbal or not able to advocate for their own needs. That is deeper than bothers. It pisses me off and scares me that people can be so disconnected from another person that they harm them in order to what they think is going to heal them. It is bothersome to hear things like aren't we all a little bit autistic? Or you don't seem autistic, but I think for the most part in those situations, those people are more likely to having a conversation in response to those comments, whereas when it's coming from a place of we need to change you because who you are is not okay, who you are is somehow damaged or unhealthy. That's harmful.

Kristen Hovet:

And have you noticed people treat you differently when they find out you're autistic? I know you've had some interesting responses, but in terms of how they actually interact with you, have you noticed anything?

Melissa Elaine:

No because the people that I have told so far are all people that I already had what I would say healthy relationship with. If anything, a lot of my friends that I've told is like, oh actually, I think so, too. Or oh yeah, actually I also found out that I have ADHD or I have some other form of neurodivergency, and so it's actually been really amusing and delighting telling some of my friends and realizing like, oh, no wonder we're such good friends because we both are neurodivergent. Again, I'm so thankful for my community that I have that. I do fear somehow in the workplace or in quote unquote the wider world, that I might be treated differently, but ultimately that would just mean that that's not the place for me.

Kristen Hovet:

Totally, I think, because, like for me, because I'm kind of public with my autism, it's kind of like something I do every day pretty much. I work at it with the podcast and everything, so it's almost like I've had to be really out about it, including at work. I have a full-time job and I'm in school and so telling people it's really interesting the variety of responses. And I think the worst one is like, they'll be conversing with you normally, then they find out you're autistic and instantly it's like they give this weird smile and like treat you like you're a very delicate being all of a sudden, or maybe infantilize you a bit. So watch out for that because that's very jarring, especially given the level of like responsibility I'm used to, and so to be treated like someone totally incapable is very strange. What other things I've noticed? People not wanting to give me tasks because they think it's going to upset me, when I've never displayed upset emotionally at work. But they just don't want to, they think, oh, I'm sensitive or something or I can't deal with it. So that's also a weird one.

Melissa Elaine:

To add something to that. What most deeply resonates for me is not necessarily leading with diagnosis. I am thankful in that, through my research and through learning so much from people who already had diagnoses and hearing stories exactly like this, I pretty safely assume that most people don't really know what it means to be autistic, especially like level one, highly masking that kind of thing, and so I just assume that they won't know what it means if I was to tell them that. So, unless it's someone that I want to enter those deeper conversations with or explain things to or something like that, for the most part I'm not really telling them. I'm not withholding it either, especially in a medical setting or work setting, what's more important for me is just describing my needs, and if me describing my needs is not taken seriously, then why would they take seriously me describing my autism? I think, especially because being on the spectrum means so many different things to so many different people, if I was to just say I'm autistic, there would still be so much explaining that I would need to do about what that means for me, that it wouldn't really help as a shorthand, unless it was somebody that already had experience with autism and understood what that means and validated it and might ask questions about oh, does it mean this or that? So for the most part, I tend to lead with describing feelings and needs and making requests around that, versus describing a diagnosis. Diagnosis, in my experience, tends to be more disconnecting than connecting, so I don't enjoy leading with that. Yeah.

Kristen Hovet:

It's unfortunate we have to live in a world where it's like that. But I totally understand and I actually wanted to mention this, but I don't know if you've read Devon Price's work, Dr. Devon Price? So they wrote a book, well, I think two books now and working on a third book. So I'm reading the second book, Unmasking Autism: Discovering the New Faces of Neurodiversity, and it really talks about level one, high masking, and I feel like it's a super accessible book for autistic folks and everyone else. So if anyone wants to learn more about autism and high masking, I feel like that's a really, really good one.

Melissa Elaine:

I might need to get that book for a couple people in my life.

Kristen Hovet:

I'm finding it super, because they weave in their own experiences and then some research, and then also they bring in all these other interviews with a diverse group of autistic people, some also diagnosed with ADHD. So it's really cool. My next question: Do you have a message for adults who are in the process of contemplating or getting an autism assessment?

Melissa Elaine:

I think one of the things that would have been really helpful for me to hear is to learn what your own intuitive knowing looks like and make your decisions around this based on that. The workbook that I mentioned and used, So You Think You're Autistic, was certainly very helpful for that. Learning from other autistic people was very helpful for that, and that helped me to know that I did in fact want to seek formal diagnosis, and I know for so many people that formal diagnosis isn't accessible or really even necessary, especially as an adult. There are ways in which formal diagnosis can even take away rights and privileges, especially if you want children or have children, depending on where you live. So I would also recommend researching and considering the ramifications of formal diagnosis, if that's something that you're pondering, and I would definitely recommend finding whatever community is supportive of you. A lot of times that is fellow autistic people, fellow neurodivergent people. That can also just be whoever in your life is most supportive of you, but having those people to validate you while you are kind of thinking about this is most key, in my opinion, you need to be surrounded with people who help support you, help validate you, help reflect you, and help ask the helpful questions, but not the invalidating questions.

Kristen Hovet:

I guess another question I had is around supports. Now that you know about autism, have you found that that's changed a direction that you go in terms of therapy or even therapists? I know some people realize that, oh, I need to leave this therapist and find an autistic therapist. How has that looked for you in that way?

Melissa Elaine:

My spouse and I did just start with a new couples therapist, and so that was something that was really really key for me in the couples therapist was somebody that at least had education on autism. We had a few consultations with some different people and one of them was kind of a similar like oh, you're what? No way, not you. And so I was like, okay, this is not the person because I cannot handle needing to educate our therapist while I'm paying you. That's not how I want to spend my time, and so that was kind of actually my only requirement was just like somebody that has that education and experience around autism. And thankfully we found that person and we've only been working with her for like three weeks, but already, like it's amazing and I love her so much. For my personal therapy, I was actually right at the time I began my assessment, I started with a new therapist who is an EMDR therapist and that is specifically to address reprocessing and healing my traumas. But I would say for most autistic people there's going to be levels of trauma and maybe even likely more deeply experienced and felt and held onto levels of trauma, and EMDR therapy is one of the only proven tactics to healing and reprocessing those things. So that was a big part of whether or not I got official diagnosis, whether or not I was on the spectrum, I wanted to seek out that type of therapy for that reason. And so my personal therapist doesn't have direct experience with autism, but he also was completely validating and accepting of coming into the appointment and hey, I'm in this assessment process and I might have this and I might have that. And he's like okay, just let me know and tell me, feel free to tell me what that means for you or feel free to support your needs in whatever way you need to in our sessions based on that. And so that was really important and helpful.

Kristen Hovet:

I did an earlier episode on EMDR. I'm finding a lot of autistic people say the exact type of thing. It was so helpful and especially because sometimes we have, there's so many things going on emotionally and cognitively that we can't really identify what we're feeling in the moment. But we can, if someone knows some of our background, we can get triggered and then have the EMDR process and that just helps us work through all of those things that we've deeply, I guess it's like a groove in our brains that we've just perseverated on something over the years, and we can just make that go away with EMDR. At least that's how I would describe it.

Melissa Elaine:

Yeah, I think to kind of add on to that difficulty with identifying feelings or people who have alexithymia, I think is what it's called. I spent three years working with this process called nonviolent communication and it is centered around identifying your feelings and needs and being able to differentiate, like your judgments or thoughts from your feelings. Not knowing at the time that I was autistic, but all my life definitely struggling to identify what I'm feeling in a moment, I could reflect on it and look back and name it, but I also didn't have as detailed a language for it. And so, spending that time, there's a book called A Language of Life, I believe, Nonviolent Communication: A Language of Life by Marshall Rosenberg, and there's also workshops, practice groups, there's a whole community around this modality. It's also known often as compassionate communication because it's really about getting past things that disconnect us and aiming for connection and communication, but also like self-connection. And so spending that time, getting those feeling words in my vocabulary was so key. Now, looking back at helping me kind of, in a moment, identify oh, I need to pause here. Oh, I can feel this thing happening in my body, that usually means I'm dissociating or that usually means I am uncomfortable at a level that I need to pause. I didn't really have that level of intelligence around those things prior to working with it.

Kristen Hovet:

A huge thank you to Melissa for being my guest on The Other Autism podcast. And that's all I have for you today. Thank you so much for being here. Until next time. Bye.

Late-Diagnosed Autistic Music Industry Professional
Nonverbal Communication and Acceptance of Autism
Autistic Individuals and School Trauma
Supports and Autistic Traits
Autism Acceptance and Challenging Stereotypes
Navigating Autism Disclosure and Interactions
Therapy and Supports for Autism