Hello and welcome to episode 4 of the podcast Tips and Tricks on How to Be Sick.
I’m Eirenne and I will be your host as we talk about navigating the world as people with chronic illnesses, both physical and mental, disabilities, and the ways in which the world isn’t necessarily designed for us.
In this episode, we are going to be talking about autism, also called Autism Spectrum Disorder (ASD), and what it’s like to realize, as an adult, that not only are you non-neurotypical but that you are, in fact, autistic. I’m going to take a moment here and give you some definitions before we get started, just so we’re all on the same page and speaking the same language. I, myself, am not autistic, so I’m drawing my information from published articles on the subject, taking care to prioritize actually autistic voices and views whenever possible.
Coined by Judy Singer, an Australian social scientist, the word ‘neurodiversity’ is a non-judgmental, non-medicalized way to talk about and talk to folks who aren’t neurologically typical, or neurotypical. Neurological diversity, or neurodiversity, covers a huge range of things, from anxiety and depression to ADHD and dyslexia and epilepsy and autism and so much more. Essentially, people with some form of neurodivergence are just wired differently than those who are neurotypical. One person can have multiple kinds of neurodivergence, and indeed that happens frequently.
We used to think of being neurotypical as being “normal” and so any deviation from that was bad or wrong or something to be fixed. And yes, in some cases, the neurodivergent person might still want some things to be ‘fixed’ or otherwise made different or better than they are, and seek treatment for them. But, by shifting to thinking in terms of neurodiversity, we give that power and agency back to the people who should have it: the people who are neurodivergent themselves.
Autism is one type of neurodivergence, and one that the autistic community largely does not want to be ‘fixed’ or removed from them. Autism is something people either are or are not born with; nothing “causes” autism, and nothing “cures” autism, either. There could be a whole podcast on just the ways autism can present in people, but I’ll simplify it down here to save time.
Autism is typically noticed in kids around age 2 or so, but some people don’t realize that they are autistic until they’re much older, even into adulthood, perhaps because people around them didn’t notice or pursue the differences in them, maybe because they had a mild presentation as a child, or because they were just trained to hide those differences and act like other children. Regardless of the reason, some folks realize their own specifically-autistic neurodivergence as adults when they realize that they:
- Have trouble with social skills and communication in general; trouble with eye contact and other non-verbal communication, or making emotional connections to other people, or not understanding verbal cues in conversation. And
- That they perform repetitive, restrictive motions or actions; repetitive body movements like rocking or flapping hands, repeating the same words or sounds (this is called echolalia), or repetitively lining up or stacking objects.
Again, this is remarkably simplified here. There are million different ways autism can manifest, and there are resources out there written by people much more knowledgeable than me about it. I’ll include links to some of those in the transcript for this episode.
Now that we’ve got the language sorted, we can get on to talking with our guests this month. We’re going to talk with Tobias, an autistic man in his 20s who knew he was neurodivergent already, but figured out the autistic piece of the puzzle later, and who will now share his tips with us on adjusting to that realization as an adult. We’ll also chat with Dani Higgins, a Licensed Professional Counselor, about the mental health aspect of being autistic, and what it’s like to pursue a formal diagnosis. We’ll discuss self-diagnosis vs formal diagnosis, and the reasons someone may choose, or not, to seek a formal diagnosis from a mental health professional, and we’ll talk about the importance of having an understanding community and support system as an autistic person.
Without further ado, let’s get to the interviews.
[Eirenne]
So Tobias, why don’t you tell us a little bit about yourself, and you know, what you do, what you’re into?
[Tobias]
So right now I’m working as an arcade and pinball technician. I kind of do all sorts of things from electronic work to having to fabricate parts for old machines that are not really- the companies that make them don’t exist anymore. In terms of outside of work, I dabble in a lot of different stuff. I write, I do some programming, I used to do a lot of music. I do it less now but it’s still definitely a thing. I am also training a service dog for myself, which will hopefully, once he gets past the puppy stage and is a little bit further along, make my life a little bit easier and make it possible for me to be a bit more independent and do those things that right now are a struggle for me, or that I choose not to do because I either can’t or because they’re more difficult than makes it worth it.
[Eirenne]
That sounds awesome. I’ve met Tobias’s puppy; Tobias’s puppy is awesome. [laughter]
Okay, so you got a diagnosis last year
[Tobias]
Correct
[Eirenne]
And you had been suspecting for awhile that maybe you weren’t neurotypical. Can you talk a little bit about your sort of journey for us?
[Tobias]
Yes. I mean, I kind of- I feel like most people who are not neurotypical have this sense that they’re different than other people. Even, definitely as a kid, I didn’t have labels for any of it, but there was this really strong- just like I didn’t really understand a lot of other kids and a lot of adults and things just didn’t make sense to me. And then I struggled a lot in school and things like that, and then I got a bit older and started meeting people who had autism and making friends with autistic people more easily than I would necessarily with neurotypical people, and having them maybe not tell me that I am autistic, but have a like sense of kinship and a sense of ‘okay, we’re kind of on the same wavelength’ here.
And then, after I had kind of a rough couple of years that made my symptoms get a lot worse, I would have periods where I was practically nonverbal or periods when I was just like, you know, would get overstimulated really easily or get really anxious and that was when I first started pursuing mental health care in general. And even from the beginning on that I was like, ‘hey, I think I might be autistic, or have ADHD’ and it just kind of got brushed off as, ‘okay, but you know a lot of those symptoms can also be anxiety or trauma-related’, so it just kind of got pushed off to the back burner. And then I kind of had that continue, that even the more I read and the more I looked into it, the more I was like ‘this sounds like me’. And I would bring it up and I would be told that’s just depression, oh that’s just this other thing that we can work on. And it wasn’t-
[Eirenne]
Yeah. Mental health is a real tangle. I mean that stuff is true, but- that a lot of things can, can mimic each other, but that must have been really frustrating.
[Tobias]
It was, and there’s definitely a- there’s a lot of comorbidity and the fact that my autism was kind of amplifying my anxiety, so yes, a lot of my symptoms were anxiety symptoms, but they had this other root cause. And a lot it, I think, is just within the psychiatric community there’s still this very specific idea of what autism looks like. And that they don’t necessarily, when someone comes in who has a full-time job, and is holding down- you know, has housing, and is able to carry on a conversation without anything seeming different about them, that that person doesn’t look like or sound like they have autism. So, it’s something else.
[Eirenne]
It’s amazing what being able to mask can do, isn’t it? [laughter]
[Tobias]
Mhmm, yeah. [laughter]
[Eirenne]
You can, you can hide everything so well with a lot of practice!
[Tobias]
And my, kind of, breakthrough came when I talked to a psychiatrist who is not only a specialist in autism and ADHD and OCD and kind of, you know, generally neurodivergent people, but is neurodivergent themself. And that was kind of like, when I was talking about ‘these are my experiences, these are the things that I have that make me feel like I have in common with my friends who are autistic or that I’ve read online’. And they were like, immediately, no that sounds like you’re autistic and helped me pursue formalized diagnosis, and have been really helpful to have that sense, and not to somebody who had like studied this and worked with other people, but who has that experience themself.
[Eirenne]
Oh yeah, having somebody who is part of the community themselves must be so much easier to connect, and connect the dots, having someone who can pick up the patterns must be much easier to deal with. OK, so now that you’ve been sort of working on this journey for awhile, what would have helped you at the beginning? If someone could have given you some tips, some tricks to make things a little easier, you know, either from easier to understand it or easier to pursue the path that you did, or even just like little things day to day? Like, to accomplish tasks, interacting with people, getting things done? You know, across any of those arenas, what are the top few things you wish you had known or someone could have told you?
[Tobias]
I think the biggest thing, in terms of when I was first coming to terms with first thinking this was a possibility for me, and then pursuing diagnosis is that autism looks very different for different people. And the fact that there were a lot of these things where I was like, ‘oh well I do that thing that is really heavily associated with autism, so I can’t really be autistic’ or there were also things that I thought I didn’t do, that I was just, later was like, ‘oh no, I do that, I was just suppressing it’. And just kind of having the broader definition and because, even though I had read the clinical definitions and things like that, there were still the things where I was like, either I didn’t understand them or because I had this very narrow idea that it was like okay I don’t have to- the fact that I have all these coping mechanisms that for the first 20-some odd years of my life I’ve been trying to fit into this mold and kind of mimicking other people’s behaviors.
I think a good example is echolalia, which is, kind of, just making repetitive sounds or repeating words, that I was so sure I didn’t do. And that was one of the things that when I read about it I was like, ‘oh, that’s not me’. And then I later was like, ‘oh, I just do it differently than- I just don’t do it with whole words, I do it with like melodic fragments from songs and things like that, okay’. It’s that- and I think this is one of the places where the, kind of, autism brain makes it more difficult because I want to interpret things very literally? And so when you give me a definition of, okay this is what autism looks like, I’m interpreting that literally and it’s not fitting me exactly, so therefore I’m like, ‘okay, that’s not me,’ when it’s a lot more complicated than that.
[Eirenne]
The infinite variations of the human brain and the human mind, and the myriad ways it can present. Okay, so, if somebody was looking for maybe clinical support or to pursue a more formalized diagnosis for whatever reason, you know, insurance or being able to get the right kinds of supports that they need, what would be the top thing that you would suggest to them?
[Tobias]
I would definitely say that finding someone who is a specialist, I feel like that’s the case for pretty much anything that if you’re pursuing a diagnosis, going to somebody who this is the thing that they do all day, every day. Because then you’re going to get the details that someone who is- has a more general area of practice might miss. And I think the other thing is- and, I mean, there’s definitely- you know, self diagnosis is valid, and there’s a lot of power in that. There’s also both, again, for insurance reasons or for being able to get accommodations and get support, having that official diagnosis- and it can also be hard because brains are so weird and complicated and even if someone is taking you seriously, they might say, ‘oh, you know, it could- you just have this other sensory processing disorder, this other- or a learning disability, or something else that might have similarities’ and I think there’s a lot of, not from a clinical point of view, but just being able to say that ‘I am neurodivergent. My brain works differently than the majority of people’, has been really empowering for me.
[Eirenne]
Oh, no doubt. It’s been that way for me just on some of my physical things, where it’s like, ‘okay this isn’t a thing I’m imagining, this is real, this is a thing that’s happening” and being able to put a name to it makes it easier to say “okay, i can work with this, I can understand this.”
[Tobias]
Yeah.
My entire life I have had difficulty with, kind of, dealing with large projects or tasks that have a lot of different little parts. I tend to either get so overwhelmed with the big picture that I can’t see the little things, or I get so fixated on the little things that I can’t see the big things. And it was just always one of these things that I was just bad at doing things. And it was, you know, I definitely grew up with this sense that there were just these things that I was bad at and I just needed to try harder. And that now I can be like, ‘oh, wait, I know what’s happening’ and I have- I can then have tools, and I also have friends and coworkers who are supportive and understanding, and I can go to them and say, “hey, I’m stuck on this,” and have- get some outside input without feeling like I have failed or feeling like I just didn’t try hard enough.
[Eirenne]
That has to be amazingly helpful
[Tobias]
Yeah.
[Eirenne]
Having people who understand. Maybe not the very granular aspect of what it is to be you, but understand that this is you, and okay, now we work with what we are, rather than with what we’re trying to pretend to be. That has to make life so much easier.
[Tobias]
Yep. And having, also there’s a give-and-take, that I am able-bodied so I have people in my life who are physically disabled and, like, okay, I can help you with physical things and you can help me when I’m having trouble getting focused, or having trouble with a task, with the, you know, executive function of it and things. And it kind of ends up being much more of a sense of a community in the sense, like, we’re all in this together and we don’t all have to be good at everything to get what we need to get done.
[Eirenne]
So having people who work in complement to you is a helpful thing.
[Tobias]
Yeah.
[Eirenne]
You can help them in the parts they have trouble with, and they help you with the parts you have trouble with, and even if you don’t all have the same, specific challenges, you can all sort of work together. And help everybody get further ahead than any of you would on your own.
[Tobias]
And, which is especially, I think, nice for me because I know a lot of autistic people, autistic adults who still live with their parents or with other family members. And you know, there’s nothing wrong with that, that is absolutely a valid way of doing things. But for me, with my family situation, having other people who are my age, people I can live with and don’t have to have the stress of trying to be independent, which would be very difficult for me. But still have this sense of, okay, these are all- we’re all kind of on the same playing field here, instead of having one of us being dependent on the others.
[Eirenne]
Well, it’s also an entirely different kind of relationship
[Tobias]
Yes, yeah.
[Eirenne]
Than dealing with a parent or a sibling or older family members. I mean, that’s just an entirely different kind of interaction, I think, for almost anybody. So, yeah, I can imagine it feels better in some ways to be able to do things on your own terms an in the way that you want to do them. I’m really glad you have that. That sounds like it works much better for you than maybe some other options.
[Tobias]
Yeah, I definitely have been in the situation of living with a sibling as an adult, and living with people who were not supportive, and this has definitely been the situation where I’m like, you know I still have to navigate being around other people, and things, and sometimes I’m like it’d be really nice to just live on my own… but not having to be completely dependent on my own ability to make decisions and ability to get things done definitely relieves stress.
[Eirenne]
Having the right kind of adapted coping mechanisms to your life and your circumstance is always really important, and it sounds like you’ve gotten yours pretty well nailed down for the moment.
[Tobias]
And, you know, personally for me a lot of that was, like I said, triggered by being in a really bad situation. And kind of this coming out of that, feeling very raw, and feeling very much like I have to build myself up again, and from there I had all of these choices. And it was having this sense of not wanting to go back to getting stuck in a bad situation again, has definitely I think has given me some more motivation to not- to, you know, that if something- not to be, feel like something is the only way to to things just because it’s gotten comfortable.
[Eirenne]
Yeah
[Tobias]
And also there’s just the fact that I have a lot of people in my social circle who are either also non-neurotypical or who have other disabilities and have- there’s a lot of us, like, okay we’re all changing and we’re all going through different journeys, and it doesn’t feel like I’m just this person that is asking for all of these accommodations or asking for people to make all of these exceptions for me. It’s, you know, okay we’re all going through our own things, and figuring stuff out, and some of us are further along than others and that’s okay.
And just kind of- that’s the fact that this- all this stuff in my life was changing anyways and I had this social circle that was like, okay, and I have a very supportive work environment as well, where I can ask for things, I can say “working during these hours is overstimulating for me and I can’t concentrate and I can’t do it” and they’re like, okay, we’ll move you to a different shift, we’ll find ways to work with you. Which I think a lot of people do not have that.
[Eirenne]
All right, well thank you so very much, Tobias.
[Tobias]
Thank you.
[Eirenne]
Okay, so for our second interview this podcast episode, we’re gonna talk with Dani Higgins. Dani is a therapist that is connected to various forms of neurodivergence, but I’ll just let them explain it themselves. Dani, welcome to the podcast.
[Dani Higgins]
Thank you, hi!
[Eirenne]
So could you give us a little bit of your own personal background, let people understand a little of where you’re coming from.
[Dani Higgins]
Yeah, so I am a licensed therapist, so I’m licensed in the state of Colorado, as a Licensed Professional Counselor. As part of that I had to go to grad school, and undergrad, and then spend a minimum of 2 years and 2000 hours supervised experience working with people in clinical settings before I could get my license. And of course, leading up to that, I like to tell people that no one becomes a therapist because they have a happy, healthy existence. [laughter]
So, you know, I had my own dealings with various mental health issues; depression, anxiety, and was recently, in the past couple months, diagnosed with ADHD for the first time at age 32. So, that’s been a discovery process, and really put some puzzle pieces together for me. And, as regards to the topic of the day, my partner of almost 10 years now — maybe 9 years- 9 years? I think 9 years — is on the autism spectrum, as is my other partner, who was also my best friend for many years before we figured out we were in a relationship. So that one’s 10 years now, probably, of friendship, of knowing each other. And I have an ex-girlfriend who is on the spectrum, a couple friends, and I have just ended up with clients who happen to be on the autism spectrum or who didn’t realize it and through us talking, ended up going and exploring some possibilities around that and getting diagnosed.
[Eirenne]
So you are well-connected to this topic it sounds like! And so, we’ve been talking today about people who either didn’t know that they could be neurodivergent, or have maybe started to figure out their own neurotype a little bit, as they’re older, as they’re past childhood, and the ways in which people progress along figuring this stuff out for themselves once they learn that neurotypical isn’t the only way to be, and I was wondering what-
[Dani Higgins]
And we’re talking- let me just be clear, we’re talking about people on the autism spectrum?
[Eirenne]
Yes, specifically autism spectrum.
[Dani Higgins]
Not just necessarily anyone who is neurodivergent,
[Eirenne]
Right, right.
[Dani Higgins]
because, yeah, people who are not allistic.
[Eirenne]
But I’ve seen that, for a fair number of people, they’re like, ‘oh there’s neurotypical is one thing, and then there’s all these other things, and then there’s this one specific path that maybe sounds more like me’. I’ve seen that in a lot of online spaces, so from your professional perspective, what kind of tips would you offer to people who are thinking maybe, ‘gee, these things I’m reading about autism really sound a lot like me’, whether it’s tips about how to interact with a world that isn’t necessarily kind to people who are not neurotypical, or whether it’s tips about finding a formalized diagnosis, anything between those points, what kind of tips would you offer someone who is starting to figure this stuff out about themselves.
[Dani Higgins]
I’m gonna approach it from the perspective of what happens for me, when I get a client who either comes in because they think they might be on the spectrum, or I get a client and pretty early on, I’m like, ‘hmm, something is pinging my radar here’, and over the course of a few sessions and tracking symptoms and asking more questions about their background and behaviors, I- we, discover that maybe they might be on the spectrum and I bring that up as a possibility. And so, when that happens, one of the first questions I get is, —[bird screech] sorry about that— “should I seek a diagnosis?”
I like to talk about the pros and cons with them, because on the one hand, for some people, they really want to know for sure, and they maybe struggle with the idea of self diagnosis, or they’re always kind of wondering, ‘am I accurate in my guess or not? Can I go through the formal battery?’ And for them, maybe an autism diagnosis would be helpful, just to have that kind of outside confirmation that, yes, this is a Thing, here is numeric values of how you scored on this gigantic assessment process, and that can be helpful and validating for them. For other people, they don’t need that. They’re like, yeah, it’s enough to have this as a possibility to explore and to start thinking, “okay, if this is the case, then maybe I can’t just power through and make my- work hard enough to be ‘like normal people'” is the term some of my clients have used, even though that’s, yanno. Or to be like everyone else.
[Eirenne]
It’s not a failure of willpower. They figure out that it’s not just a, ‘oh I’m just not strong enough, it’s actually a specific Thing’.
[Dani Higgins]
Yeah. And people kinda have one of two reactions, I’ve found, to getting diagnosed or to starting to even to self diagnose. Which is either they go “oh shit, I’m really broken, and I’m fundamentally broken,” and I think connecting with the autism community is helpful to kind of untangle that concept, because it’s not brokenness, it’s non-typical wiring. And so kind figuring out the path of acceptance and the path through shame is a big part of that for them.
And then the other reaction is, “Oh! I’m not broken, I just have this thing going on, there’s an explanation for why, no matter how hard I try, I can’t do these things, or do these things in this way, or understand this, that, or the other.” It becomes more of a relief and a way to get out of the shame that they’ve felt all their lives. So there’s really a lot that come come up with even just starting to consider the idea of being on the spectrum.
So there’s that piece. And then there’s the piece of, if you get diagnosed, and you have a formal diagnosis, it would count- it used to count as a preexisting condition, which can complicate insurance. Right now I think that’s still not a thing under the American Care Act [sic], but, you know… A couple of my clients decided to not pursue a formal diagnosis at this time because they weren’t sure what’s going to happen with the ACA under the current administration.
[Eirenne]
That’s totally fair.
[Dani Higgins]
Yeah. That is a consideration. Like, what is the potential harm of a diagnosis, and is it worth it? For some people, the confirmation is worth it. For other people, like if you’re in school right now, or you’re going to go back to school, go to college or anything else, that’s when I think a diagnosis can really be worthwhile. Because it will give you that kind of paperwork in order to get academic assistance and disability assistance.
[Eirenne]
Yeah, definitely the ability to get social supports when necessary seems like a really big benefit to having a formal diagnosis.
[Dani Higgins]
The accommodations you can get can be really valuable. So I generally think it’s a pros and cons thing with assessment. The thing with assessment, the other thing that comes up, is what does even assessment look like? And who can assess you? Someone has to be qualified in order to assess one, and just because they’ve got a Licensed Professional Counselor license, an LBC, doesn’t mean they can actually give you a diagnosis. I can actually diagnose people. It generally takes a psychologist, a psychiatrist, or someone- basically someone who is a doctorate or with a certification to diagnose that specifically. Like, I can diagnose depression, anxiety, all sorts of things like that, but the more developmental-associated diagnoses, I can’t actually diagnose for, officially.
[Eirenne]
You can sort of spot it and then make recommendations about who else to see and pass it along to someone who is capable of stepping in there.
[Dani Higgins]
Exactly. And the formal diagnosis, one, the other piece, it can be expensive. It can be $400, $450 to get a formal diagnosis.
[Eirenne]
Yikes!
[Dani Higgins]
Yeah. And it’s a multiple step process, usually it’s multiple sessions, and part of it is you, yourself, as the client take a fairly significant series of questions and respond to them. There’s an in-person portion where they evaluate and they talk to you and they get your history. And at least the ones I’ve participated in, because I’ve been the Friend, the Outside Person that people have brought this to, you have another questionnaire that you give to someone who knows you reasonably well, for them to fill out of their observations of you, and impressions of you.
[Eirenne]
I imagine that feels pretty vulnerable for people who are pursuing this.
[Dani Higgins]
Oh yeah. Well, getting someone in your life to answer these questions about, like, do you understand- do you seem to understand humor, or turns of phrase, do you seem to do repetitive motions, you know all the various symptoms sets and qualities and common behaviors that happen through the common tendencies that happen with autism, it’s a huge long list they’re supposed to fill out and then they give it back to you. So you can look through it if you want, and see what your friend thinks of you, which is really awkward and vulnerable and kinda scary.
[Eirenne]
No doubt. It’s one thing to have sort of a dispassionate outside observer that talks about this stuff and looks at this stuff, and a different situation altogether to have someone close, someone who matters to you, being the one telling you these things.
[Dani Higgins]
Mhm. Exactly.
[Eirenne]
Wow. So it definitely sounds like a process, but as you said, something that is worth it to some people for any number of reasons from feeling validated in a very concrete way to being able to the right kind of paperwork to back up requests for academic and social support services to make it easier to interact with a largely neurotypical world when one is, in fact, on the spectrum. Dani, thank you so much for coming to talk to us today
[Dani Higgins]
Of course!
[Eirenne]
this has been very helpful and this will be some very useful information for folks.
[Dani Higgins]
Thank you for having me.
If you check the website for this podcast, you’ll find a full transcript of these conversations, plus links to all the things we talked about today.
Please, continue to join me here every month for a different topic and set of tips and tricks. You can find us on the web at http://www.sicktipsandtricks.com, on Twitter @HowToBeSickTips, and on Facebook at SickTipsAndTricks. As always, a full transcript of this and every episode is available on our website.
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Tips and Tricks on How to Be Sick 