Adria Nassim was diagnosed with autism in her mid-teens, and is now a prolific author, speaker, and advocate for children and adults with disabilities. She reflects on her writing and advocacy, her diagnosis, and the gifts of self-knowledge and self-acceptance.
00:00:00 Johnandrew Slominski
Welcome to this episode of the Autism Annex Podcast. I'm Johnandrew Slominski. Adria Nassim was diagnosed with autism in her mid-teens, and now in her 30s is a prolific author, speaker and advocate for children and adults with disabilities. In today's episode, Adrian talks about her writing and advocacy, her diagnosis, nd the gifts of self-knowledge and self-acceptance. I got to know Adria in part as she reviewed a new social skills curriculum for Star Autism Support, called SOLER. As an adult on the autism spectrum, Adria had a unique and thoughtful perspective. She's passionate about her work as an author and advocate for people with disabilities. This is an excerpt from our conversation in January of 2022.
Welcome to the podcast, Adria. Let's start with some background. Where did your story begin?
00:01:01 Adria Nassim
Sure. Well, my name is Adria Nasism in 2008, during my junior year of college, I was enrolled in a private independent living skills program for young adults, ages 18 to 26, with documented history of autism spectrum disorder and learning disability, which I have both. I was diagnosed with an autism spectrum disorder in my mid to late teens and then the learning disability was in early childhood and kindergarten. But I guess some background information about me.
I'm originally from Floyd County, Indiana, which is right at the southern end of the state, about 15 minutes outside of Louisville, KY, on the southern Indiana half of the Ohio River. I came to Bloomington for this independent living skills program and I now live in Bloomington full time. I work for the I Bloomington campus, a specific division called the Indiana Institute on Disability and community, uh, where I write a blog on promoting independent living skills and community involvement in teens and young adults with all types of developmental disability, and also sharing my personal experience of living with developmental disability and also give lectures on autism and learning disability in children, teens and young adults to college students and area businesses and organizations just for community education, sake and the college students.
00:02:40 Adria Nassim
I mean it's a lot of fields of students that want to work with: children and young people with developmental disability in some capacity. And then I also write a column every other week for the city paper, The Herald Times. The focus is primarily on autism and disability related issues. I started that in the winter of 2016 and I'm about to have my fifth year with them so, it's really cool.
00:03:13 Johnandrew Slominski
A quick aside for listeners who are interested in reading Adria's work, you can find her writing online at Adria's notebook and in the archives of the Bloomington Herald Times. If you're looking for interesting reads from an author with a unique perspective, seek her out. Her blog is blogs.iu.edu/adriasnotebook.
00:03:40 Johnandrew Slominski
Speaking of your writing, Adria introduce us a little bit if you would to your work.
00:03:47 Adria Nassim
You know, I was hired by the now retired editor, Bob Saltzberg with the city paper, The HeraldTimes, who was with the paper for 33 years. I remember we had a lunch meeting and he sat me down and he said, what do you like to write about? And I said honestly, Bob, I write a lot about disability. He, if I recall correctly, I think he asked me why.
00:04:13 Adria Nassim
And I said because Bob, it was the first world I knew. I was in both regular and special education. lindergarten through 12th grade for a significant learning disability and math and the mild cerebral palsy at birth and then later on autism, which came along in 10 years om you know, adult years. But I said that was the first world I knew and over time. I learned to integrate with typical children and typical young people, but I think unless people have a family member with developmental disability, unless they are connected professionally through whether it be child psychology, special education, or pediatrics, it is a world, although we've made strides nationally and certainly through inclusion and certainly through more awareness in the media and even in public health. with children and young adults with developmental disability, it is a world that I think many people still do not see and still do not associate with.
00:05:34 Johnandrew Slominski
That an interesting point. Do you find, then that you gravitate to particular topics when writing about disability?
00:05:44 Adria Nassim
I wanted to help educate the community. I mean, I've written stuff about disability law, I've written stuff about my own experiences with autism and how autism affects me, and, you know, certain symptomology of autism, you know, and raising awareness to the fact that kids with autism and young adults with autism, they are not necessarily defiant or disruptive kids.
00:06:11 Adria Nassim
There are kids that their neurology is different and their behaviors and their social understanding is different and warrants specific understanding and empathy and attention.
00:06:26 Adria Nassim
You know, I’ll give you an example: if you have a kid in story time at the library and all sudden screaming and crying and kicking, and he may not be doing that, meaning to cause a disruption. It may be sensory overload. It may be that he's uncomfortable, maybe lack of communication.
00:06:46 Adria Nassim
All these sorts of things, I've written about employment, I've written about, you know, my experience in employment issues surrounding employment for kids with developmental disability and how in many ways it gives them a purpose. But many times employment is hard, post-secondary options for kids if that be something that a parent thinks about. Summer camps, I think disability, many times I think people think of disability as one thing, but it truly is an entire world really.
00:07:26 Johnandrew Slominski
You mentioned earlier this image of neurodiverse kids being misunderstood as maybe defiant or disruptive. And I imagine for many people this conjured up an image and it certainly did for me. And so I'm wondering if that image of the kid in the library is drawn in some way from your own experience.
00:07:49 Adria Nassim
I think in some ways yes, although I was verbal, developed, had developmentally appropriate verbal ability. At times I was very fussy, I had troubles with emotion regulation. I did not like changing routine. I very much loved schedule. I had a lot of difficulty with changing routine. I had a lot of difficulty, particularly with unannounced or sudden change, which I know can be a very common difficulty with kids and adults all over the spectrum.
00:08:27 Adria Nassim
I had sensory issues, I didn't like to be touched. I didn't like certain fabrics. Many times when kids, you know, fall down and hurt themselves, they may run to mommy for a hug. Oh no. I didn't like hugs, didn't like loud noises.
00:08:47 Adria Nassim
So if we were in, let’s take holiday shopping going on right now. If we're in Target and we're.
You know December 15th and we're looking for presents for people and it's crowded and it's noisy and even having to stand in line to wait for Santa to visit Santa, my mom would tell me I would squirm, and she'd have to say Adrian, honey, sit. And though I didn't, she would tell me. But I didn't like the bright lights. I didn't like the noise. I'd stand there and fidget and squirm like crazy. So she said to me once, because I think a few years ago for the paper I did a column related to sensory friendly events for kids around the holidays in the area. And she said, honey and we are, you know, Christian, I will say, as our family's relatively liberal, but yes, we do celebrate Christmas. And she said to me if sensory-friendly Santa had been a saying when you were a kid I probably would have taken you. Because it was really something to get you to sit on Santa's lap and pose for a picture and smile. And to just even wait in line was a feat.
00:10:06 Johnandrew Slominski
Now, I was tickled to read in one of your recent articles about a new helper in your life of the four legged variety. He can't speak for himself, but could you introduce him a little bit to listeners?
00:10:18 Adria Nassim
Well, yes, talking about helping. Yes, he's actually a service dog. His name is, well, everybody calls him Mr. T. But his name is Thomas, and the program that trained him is called I can, they are out of Zionsville IN.
00:10:44 Adria Nassim
And they ask that the clients actually come up with kind of a pseudonym for the dogs to use in public so that everybody's not saying hi, Thomas. hi, Thomas. Hi Thomas. And then his attention potentially goes everywhere but me. Yeah, so everybody else calls him Mr.
00:11:04 Johnandrew Slominski
So as a service dog, what is Mr. T like and how does he serve you?
00:11:11 Adria Nassim
Mr. T is a very sweet dog. He's very friendly. He's a 2 year old yellow lab, so I Can as a nonprofit service dog training organization in Zionsville, IN which is near Indianapolis and he is trained for both the autism spectrum disorder and the Cerebral Palsy, so he helps to pick up objects. He can retrieve items on queue and bring them to me. He helps with balance and stability. Downstairs and uneven surfaces when walking. He can push cabinet doors closed and like close drawers and stuff.
00:11:54 Adria Nassim
That's not something he has to do like every day, but occasionally he will, yeah. He can like, pick things up and like he likes to get the newspaper and bring it here.
00:12:09 Adria Nassim
For the autism, primarily his job related to autism there to that he helps with safely crossing the street. Because although I have enough independent skills and enough cognition and wherewithal, I suppose you could say judgement to be out in a city alone, I don't have the judgment of distance, the timing. Being able to understand if a car is coming, how fast is it coming and how far is it away to judge when is it safe to cross the street? Really.
00:12:52 Adria Nassim
That's why I thankfully live in a city with crosswalk where all you have to watch is the image on the sign because I can see images and I can say what is the image? You know what does it say? OK, I know that, but to judge abstract things like distance, timing, speed very well because this is kind of getting medical and technical, but when I was a baby, I had a very serious hemorrhage, which resulted in the cerebral palsy and probably as well the learning disability. But a quite extensive hemorrhage to the part of the brain called the parietal lobe. Which involves visuospatial reasoning, so concepts that are abstract like distance, timing, speed, even finding your way in an environment even when you look at life skills like counting money, making change, being able to tell time.
00:13:45 Adria Nassim
That I mean I eventually learned on like a digital clock. But most kids were telling time in about first or second grade. For me I was still having difficulty in high school and my mom finally said OK, we're getting a digital watch and we're going to solve this problem. Because I can read numbers, but yes, he does help with safety in public and he tell the dog, OK, you know magic word and he you walk with him. He knows to walk. And also he helps to initiate, help with social interaction and social skills, which can be an area of difficulty for kids and adults with autism because he becomes kind of a talking point in conversation and people like to talk about the dog and see the dog.
00:14:36 Adria Nassim
He can't be petted a lot because he's got to know that his attention is supposed to be on Miss Adria. Yeah, but people like to talk about him; I notice that everywhere we go, the conversation suddenly switched to, Oh my God, look what my dog did.
00:14:53 Johnandrew Slominski
I was wondering about that in terms of how Mr.T interacts with others, given that he is really focused on you and since you have so many engagements and you're so busy, I wonder how much he participates in some of those interactions.
00:15:10 Adria Nassim
It's funny you say that because he, of course, dogs inherently are social creatures, and what I found walking a dog because this is not my first service dog. I had another service dog, Lucy, who is almost 12 New Year's Day and now is living with my parents about 20 minutes away, she's also a lab, but she was with me until, you know, this fall, she retired in September. But I noticed that everywhere, even when I would go with Lucy people when I would take her to go like college classes and speaking engagement, people would speak speaking engagements, people would remember the dog and people would stop. People stop me on the street like college kids and say, you guys came to my now saying class you guys, I remember you. You're the kid that Talked about autism? Yep. Oh, and that's your dog. Hey, Mr. T. You know it's really cool.
00:16:09 Johnandrew Slominski
When you do classroom visits, I imagine you get a lot of questions. What sorts of things do people ask?
00:16:17 Adria Nassim
It varies. It depends on what area of autism really. Sometimes the professor wants to focus on. I mean, sometimes it's just a general overview of autism, but many times it is giving them personal insight into potentially. Because autism, again, is a very, very broad diagnosis. Life with autism especially, and many of them contact me, the professors, because they're very interested in the young adult years. I think a lot of attention, as it should be, is paid to the pediatric years. But transition resources and funding for support services for young adulthood and adulthood there is not as much. But so I'll talk about that.
00:17:11 Adria Nassim
I'll talk about like life after high school. If they want early childhood from, you know, my experiences, I will. But I will absolutely make clear to them that I was not diagnosed clinically as autism spectrum as a child because I didn't fit the profile until the definition was expanded in 2013.
00:17:34 Johnandrew Slominski
And you've been pretty open in your writing about your diagnosis and the fact that it occurred relatively late in comparison to many people.
00:17:43 Adria Nassim
About 15, anywhere between 15 to 18 really is what they say and many times I should say with girls it can be later.
00:17:47 Johnandrew Slominski
00:17:53 Adria Nassim
And I'm not saying. It can't be with boys, but the research is looking like boys many times are caught earlier. Because the research is honestly geared to look at, if you will allow the term deficits in development in boys and young men and not so much as girls, girls, it even says now that the current research that the autism presents differently in girls and women.
00:18:23 Johnandrew Slominski
That's a really important point, I think. And as an aside to listeners, if you'd like to learn more about the schism and diagnosis between boys and men and girls and women, from a psychologist's perspective, check out our November 2021 episode with Doctor Matt Lundberg titled Autism and Mental Health. Doctor Lundberg is a licensed psychologist, and he talks about women being repeatedly misdiagnosed and under supported when it comes to autism.
00:18:55 Johnandrew Slominski
Adria does this description sound accurate to what you've seen?
00:19:00 Adria Nassim
Yes, and I will say I think one thing that really did help me though, when I was quite young in the childhood years was that I had parents that were very aware and very, very involved. And able to thankfully inform afford me the resources to access, you know, services for early intervention and such, and not to mention I also had as well as parents that were very good with being involved in my care and modeling things like appropriate behavior and instituting quick, you know, consequences for inappropriate behaviors.
00:19:47 Adria Nassim
So when you look at social and emotional development, I had another thing going for me, which was a typical younger sister and I think watching her taught me, although I suppose I didn't know it when I was of course, when I was, you know, 8 and 10 and she was six and eight, I suppose, but I suppose that was a window to me as a young child, and then as a teen, to how typical children behave.
00:20:27 Adria Nassim
And I probably, you know, I followed her. I watched her. I played with her. And lo and behold, in a way it was sort of a quote-un-quote study hall course in in human behavior, and then how to behave or around other young children.
00:20:49 Johnandrew Slominski
Speaking of human behavior, I'm recalling from our previous talks that in your childhood you had no connections at all with Applied Behavior Analysis or ABA, but that you've become intimately familiar with behavioral practices and principles in a BA as an adult.
00:21:08 Adria Nassim
You're exactly correct. I did not have a BA or what is otherwise known as applied behavioral analysis as a child. Applied behavioral analysis is one of the, I suppose one of the most common evidence based practices in terms of forms of intervention for kids and adults with autism primarily, though, I will say it is primarily used with children.
00:21:39 Adria Nassim
In fact, the fun fact under Indiana Medicaid, although a young person may be working on things like social skills growth, and for me maybe executive functioning skills, maybe emotion regulation, it is not called ABA.
00:22:00 Adria Nassim
Once they age out of school based services, it is called behavioral management services.
00:22:06 Adria Nassim
So when you look at adult services it it varies state by state, what they call it.
00:22:15 Adria Nassim
But yes, I did not receive any ABA as a child because again, I didn't qualify for services under an autism diagnosis because autism then was much less broad.
00:22:29 Adria Nassim
But what do I believe about ABA? I believe that ABA is effective. Yes, when tailored to an individual's goals and areas of difficulty in areas of strength and such, that ABA can be very effective for kids and adults.
00:22:56 Adria Nassim
Sometimes I think people can hear or can read that ABA has an aim to change or normalize individuals with autism. I have heard that as well. And if you believe that and you're listening to me right now, I will just say I'm not going to tell you you're wrong. You have the right to your own opinion. But I also say that that is not, that is not where the aim of ABA is as a science.
00:23:37 Adria Nassim
And the aim of ABA is to yes, it does change people on the spectrum or with developmental disability as a whole because it allows them to do things they have never done to experience things they've never had. And in some ways, yeah, it may be scary for them. It may be a little nerve wracking, but out of that these doors that have never been opened to these young people before.
00:24:13 Adria Nassim
For example with autism, sometimes you see struggles with diet because of sensory issues and maybe you have a young person who only eats chicken nuggets and fries. Maybe with an ABA therapist and with food exposure therapy you can get a young person over a period of weeks consistently to sit down at a place like, let's say you want to have a nice family dinner and sit down a place like here we have in Bloomington a nice restaurant called Farm. That's like farm to table organic. Nice stuff.
00:24:48 Adria Nassim
Maybe instead of chicken nuggets and fries, we can get a piece of grilled chicken and a baked potato instead of fries and maybe some broccoli, little by little, the world begins to open.
00:25:03 Adria Nassim
And if you are a professional, and if you are an ABA therapist listening to this right now, I think you come into this profession with wanting to help them wanting to see what possibilities you can show them and you know another thing? I think society sometimes hears about ABA is that ABA is used to make normal of people with autism used to make them typical. Right?
00:25:36 Adria Nassim
But I come from a family and also tend to surround myself with people who value science. The idea of making normal of people with autism...
00:25:50 Johnandrew Slominski
Well, what's normal anyway?
00:25:53 Adria Nassim
Exactly. And to make normal of, you'd have to eradicate the autism. And if I recall, there is no nothing close to doing that yet.
00:26:05 Adria Nassim
You know, the closest thing I will say that I have had to apply behavioral therapy is probably social skills therapy. And although I did learn how to engage with peers and how to how to make eye contact, which is a thing that typical young people do in conversation, and how to read body language and how to have a reciprocal conversation about other interests other than my own.
00:26:38 Adria Nassim
I didn't feel that I was made to be someone that I'm not. I felt, and honestly, I felt, and it was over a period of 3 1/2 years that I was in social school therapy, I felt as if I was empowered, like I was almost learning a new language because for the for the first time.
00:26:58 Johnandrew Slominski
00:27:03 Adria Nassim
I was getting to experience what it was like to form relationships with people, and you know what? If I had to be a therapy for that to learn those skills, then so what?
00:27:18 Johnandrew Slominski
Earlier in our conversation, you outlined some of your experiences in your teenage years, as well as the steps that you've taken in college and beyond into adulthood. For parents and caregivers and those who are also going through important transitions. What advice would you give?
00:27:37 Adria Nassim
I would first be honest and say my teen years were quite difficult. But it did get better. Because I what I did was that I found a community who accepted me for me, regardless of my diagnosis, and I think that one of the biggest things to help that help with that, if I can also be honest is that I ultimately learned to accept myself. And a big part of that was that I accepted my own situation, my own diagnosis, and I stopped running from it.
00:28:20 Johnandrew Slominski
What I'm hearing is an incredible feat of self-acceptance and a sort of manifestation, if you will, of the idea that we can't really fully be accepted by others until we accept ourselves the way we are.
00:28:36 Adria Nassim
When I got when I had started getting texts not to people that I would send but text from people that I knew to me saying, hey, what are you doing? Do you want to come hang out or hey, you coming? I thought, Oh my God. I think this is what is supposed to happen on the other end of like a peer relationship. This is what all my friends do. And I will never forget, I mean it happened a few times but, I remember the few times my mom would say to me, Adria, put your phone away. Quit texting.
00:29:29 Adria Nassim
And in high school, and even in college, she never would tell me to quit people, I think to understand and to be busy socially and to, you know, be looking her phone because she's texting people. Oh my God.
00:29:51 Johnandrew Slominski
What a deeply personal journey, and that aspect of accepting oneself resonates, I think so deeply within all cultures and all walks of life. But I think for most people, and it sounds like for you included, this can't have been an easy process.
00:30:10 Adria Nassim
It took a lot guys, it honestly took going to a clinical therapist for years from about the time I was 13 until I was about 24, until I realized, you know what? This is me and I am who I am, but I ultimately came to this realization with the help of mental health professionals, that life is what life is for me. You know, I'm not going to drive a car. I'm not going to, you know, live without support. Somebody's always going to have to be there.
00:30:46 Adria Nassim
But life is what life is. And I can either make the best of it and I can accept it the way it is or I can stay in my room and be lonely and wish things were different. And so when I was about my mid 20s, I finally said, you know what Adria? You're you and life's good. And I went out and I said, you know, and I started having conversations with people, and I would get to know them first.
00:31:16 Adria Nassim
And I get to know their personality and who they were, you know? And I was sitting, I'm sitting down, we grab coffee and we talk and I say I just want you to know that I have something called autism and a learning disability and this is how it affects me. And because I got to know their personality and got to know what kind of person they were, they were, I could tell. And that's how I made the assessment is that they were very accepting.
00:31:43 Adria Nassim
They were very, you know, they were pretty, they were cool with it, but I had to first get to know them as people and not just pop it on them.
00:31:54 Adria Nassim
And that took that, took some coaching, too, from people like social skills therapist. And yeah, I really have it, have found it to be very fulfilling and rewarding to be able to just embrace myself because ultimately I think people embrace me more and I know it's hard.
00:32:14 Adria Nassim
I mean, there were, I'll be honest guys. There were days where I would hide in my room and I would cry. And I still do have my bad days. I really do. But we all do and I just.
00:32:26 Johnandrew Slominski
Sure we do.
00:32:27 Adria Nassim
I just want to encourage you to embrace your situation and get out there and make the most of life because you're worth it and you absolutely deserve it and the world deserves to see you just as you are.
00:32:44 Johnandrew Slominski
I think you've just ended the podcast perfectly. Let's leave it there.
00:32:50 Johnandrew Slominski
My guest today has been Adria Nassim, author, researcher and public speaker, based in Bloomington IN.
00:32:58 Johnandrew Slominski
Thank you, Adria, for all you've done to make this podcast episode come to life. It's been such a pleasure to have had this conversation with you.
00:33:07 Adria Nassim
Of course. Thank you so much for having me. I really enjoyed it.
00:33:11 Johnandrew Slominski
And thanks to all of you for listening to the Autism Annex podcast.
00:33:16 Johnandrew Slominski
If you're enjoying the podcast, please share it with a friend or colleague this month. And be sure to read Adria Nassim's work, which you can find at blogs.iu.edu/adriasnotebook. Adria is spelled ADRIA.
00:33:37 Johnandrew Slominski
A quick note, if you have a story, you'd like to tell on the podcast, send us an e-mail. You can always find us at firstname.lastname@example.org.
00:33:50 Johnandrew Slominski
The Autism Annex podcast was developed by Star Autism Support and as always, I'm Johnandrew Slominski. Until next time, take good care of yourself and one another.