Cover Image - Diagnosis Journeys | Spectrumly Speaking Ep. 144

Diagnosis Journeys | Spectrumly Speaking ep. 144

Spectrumly Speaking is also available on: Apple Podcasts | Stitcher | SoundCloud



We are continuing our look back at some of our wonderful previous guests, and today are revisiting stories about receiving a diagnosis! Featured in this episode are: 

DR TEMPLE GRANDIN – Learn more about her at For her full interview click here

MIKHAELA ACKERMAN – Learn more about her work at / For her full interview click here 

LAUREN MELISSA ELLZEY – Learn more about her at / For her full interview click here 

MORÉNIKE GIWA ONAIWU – Learn more about her at / For her full interview click here 

SARAH SELVAGGI HERNANDEZ – Learn more about her at / For her full interview click here 

JEN MALIA – Learn more about her at / For her full interview click here 

FINN GRATTON – Learn more about them at / For their full interview click here  

TERRA VANCE – Learn more about her work at / For her full interview click here 

BARB COOK – Learn more about her work at / For her full interview click here 


Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.

Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.

For more about Haley, check out her website: And look for her on Twitter: For more about Dr. Butts, check out her website:

Have a question or story for us? E-mail us at




DR LORI BUTTS (LB):  Welcome to Spectrumly speaking. I’m Dr. Lori Butts. I’m a psychologist and an attorney. We are continuing our look back at some of our wonderful previous guests and today we’re revisiting stories about receiving a diagnosis. Let’s start with a diagnosis from the year 1949 as received by DR. TEMPLE GRANDIN (TG).  

TG:  When I was diagnosed, nobody hardly knew what autism was. I was taken to a neurologist who said I had brain damage, because I didn’t know what else to call it found out I did not have epilepsy, I was not deaf, but fortunately referred me to a really good speech therapy school teachers just taught in their home. So I got excellent on early intervention, which I can’t emphasize how important that was. And I had no speech until age four. When I was three years old, I was completely nonverbal and looked pretty severe, but there was no evidence of seizures.  

LB:  Now let’s hear from another person diagnosed as a child, AMY GAVINO (AG).  

AG:  Fairly inauspicious beginnings, I suppose I was diagnosed at the age of 11. Back in 1994, which was interesting because that was the same year that Asperger syndrome was first added to the DSM. So to be diagnosed at that point, especially as a woman was really extraordinary that someone was able to spot that in fact, my psychologist was to I always mix up psychiatrist and psychologist, I believe, psychiatrist, but he was English. And perhaps two, they had a little more knowledge over in England, and we had here in the States at that time, so he was the one who diagnosed me. We bounced around my parents and I had bounced around from specialists, specialists. Before then, at first, my parents thought that my hearing was not good that I thought that that was why I was listening to them. So they had my hearing tested. And then finally, we ended up in the child psychology department at Stony Brook University on the island. And that was where I was diagnosed.  

LB:  Next author MIKHAELA ACKERMAN (MA) shares how her diagnosis came at a time when the understanding of autism was changing.  

MA:  I was diagnosed when I was fairly young, back in the early 90s, when autism was kind of more of a dirty word, so to speak, no one really talks about it. And upon diagnosis, the procedure was really to just send those kids to group homes. And my mom was actually called cruel by medical professionals for not doing so it can it was considered, you know, not very nice to put me in regular school, or to let me try these things, it was considered setting me up for failure. So, I was kind of on the first wave of a new way to quote unquote, treat autism, so to speak, you know, so we did the OT, the PT, the speech therapy, equine therapy, all kinds of different things to really determine what my strengths were. And through that, I became more and more verbal. And it turned out that ironically, my verbal communication became one of my greatest strengths in this life. And so I continue to do that I continue to just really figure out what my strengths are, follow those strengths and accommodate my weaknesses.  

LB:  Now, let’s hear from some self-advocates diagnosed as young adults, starting with Sarah Lutterman (SL).  

SL:  Like a lot of autistic people assigned female at birth. I didn’t get diagnosed when I was younger. I didn’t get diagnosed until after I’d finished grad school. And then I was entering the job market, and I just couldn’t, I couldn’t get a job. I had, my resume was fine. And then I’d get to the interview stage, and then it would just never go anywhere. And so about a year into that, my mom read this book called look me in the eye by a gentle the Robeson. And she was like, Holy heck, that’s, that’s Sarah. Um, so she suggested that I get evaluated. Um, I’m really grateful that I had my parents support in to do it. And it really changed my life. I guess for a long time, I thought I was like, somehow, just like this uniquely broken thing that had crawled out from under a rock and finding out that other people like me exist and that I wasn’t like, bad or wrong was really powerful for me. I still sort of struggle with employment, but at least I kind of understand why and what’s going on and it makes definitely makes my life a lot easier and happier.  

LB:  Next, fidget club founder Shira Mechanic (SM).  

SM:  I’m 27 years old, and I was diagnosed with autism in my early 20s. My journey to identifying as an autistic and to getting a diagnosis was pretty long and a little bit bumpy. From the age of 16, I’d been through various treatments and to treatment facilities and worked with many different professionals who all tried to squeeze me into various diagnostic categories that really didn’t fit. My diagnosis tend to have a lot of not other specified qualifiers, and professionals really didn’t know what to make of me. Eventually, mostly through a process of reduction, I was diagnosed with autism. And at first, I disregarded this diagnosis the same way that I did with my previous diagnoses. Because I was diagnosed with so many different completely conflicting things, that I really stopped giving a lot of weight to the whole concept of diagnoses. But eventually, I learned more about autism and sought out professionals who specialized in autism. And I really came to accept the diagnosis of autism and started to identify as autistic. And I realized that my autism explains a lot about me, and my difficulty navigating the world as well as many of my strengths and struggles.  

LB:  Up next, LAUREN MELISSA ELLZEY (LME) shares her struggle with resentment with being diagnosed as an adult.  

LME:  Even though my mom kind of figured out that I’m autistic. By the time I was three years old, I never was formally diagnosed with autism until I was 23. So that’s about eight years ago now. And it was a big answer for me in my life, I’d always felt different. I think we hear that narrative a lot from many late later diagnosed autistic individuals, I always felt very different, I felt oftentimes broken. And I was really scared about my social encounters with people. And I thought it was something I had to change about myself. And then I discovered I discovered my autism. And when I received my diagnosis, I felt empowered in so many ways. And I was able to shed those feelings of inadequacy and lean into my new not entirely new since it had been who I am my whole life, but my new identity that I had become aware of. At the same time, I felt really resentful, or bitter, that my diagnosis had come later, because I thought I would have really benefited from being connected to the Autistic community at a younger age and recognizing more about myself as an autistic person. And that resentment, those feelings, they were bubbling up in me, pretty strongly. I had been told by my psychologists that one of the reasons why I had not one of the many reasons I had not received a diagnosis until later was because I had developed coping skills on my own, that masks my autism when I was a child. However, those coping skills, they crumbled very quickly when I reached adulthood, and I could no longer mask and eventually, through the years that led to my diagnosis, and that frustrated me a lot. But I decided to, in a way, sublimate that frustration, and think through some of my coping skills, they are okay, they are autistic centered, and they do help me. And I wonder if I could share some of those coping skills with other autistic people. And if I could also connect with autistic people, and they could share with me how to be authentically myself. So I reached out to the Autistic community via Instagram, and started posting different things that I did in my day to cope with being artistic in a world that is not very supportive. And through that I became connected to the community and I am where I am today.  

LB:  One common theme we hear from our guests is that of being diagnosed as an adult after a loved one is let’s hear about one such experience from MORÉNIKE GIWA ONAIWU (MGO).  

MGO:  And I grew up undiagnosed. I wasn’t aware of that I was Autistics for the majority of my life. And I’m so as a parent, I’m one of my children, and then later another was referred and then diagnosed. And basically there were, I guess, quote, unquote, signs that people saw, in particular the Mother’s Day Out program that my daughter attended, and they noticed some differences and I notice the differences too, but I was like, That’s just how I was, when I was little everybody, you know, no big deal. And so going through the process of screening them for various things to rule out what the diagnosis might be, because, you know, obviously, there are a number of conditions that have similar, you know, that appears similar in terms of the characteristics that you have. So, while we were going through all of these various different evaluations and whatnot, to determine, you know, what was going on. And so that’s how I went, you know, essentially, I was researching more and more, and I was like, Wow, this sounds a lot like me, you know, it was just, you know, but I just, you know, didn’t really think anything of it. And so initially, I was involved in advocacy as an autism parent, just trying to learn a little bit more, I wasn’t very active, I was just trying to inform and educate myself. And, and, you know, eventually, my children’s provider said, Hey, we’re okay, have you ever been assessed, you know, I’m sitting there, like, rocking and you know, twirling my hair, I’m like, uh, your urban, you know, all of that to me. And she’s like, but you say, your kids are just like, the way you were as a kid? And I’m like, Yeah. And you’re and your kids are autistic? And I’m like, yeah. And they’re like, and, and so it kind of dawned on me, I was like, Oh, wow, that’s true. So I kind of started looking into some things and self diagnosed before I obtained my official diagnosis. But the more I found, I found so many things that disturbed me, there were so many things out there that were so inaccurate, and so negative about, you know, your child’s life is over, it’s destroyed, they’re locked inside of themselves, and you have to hit hard hit early, or you’re going to, you know, early intervention, or they’ll never have a real life and your marriage has been destroyed. All of this, you know, all of this negativity, and I was like, Oh, my goodness, it just, it just really, you know, Earth to me that, you know, basically all this fear mongering was going on. And I was just trying to find a way to kind of, I guess, balance that or counteract that. And that’s kind of how I sort of kind of fell into advocacy, really out of a desire to kind of correct the BS I was hearing.  

LB:  Now, let’s hear from SARAH SELVAGGI HERNANDEZ (SSH), the first openly autistic person elected to serve in a government position in the United States.  

SSH:  My son was educationally identified as being autistic. And I was actually in school for occupational therapy at the time. So I was like, I said to his teacher, I’m like, if he was it? Well, you know, at that time, I wasn’t even using identity for affirming language. So I’m like, if he was on the autism spectrum, I would know I’m in OT school. But then, you know, what I continue to learn was that there’s a lot of misunderstanding about what the spectrum is, and also the difference between being diagnosed and embracing culture. And that’s really been for the past decade, where I’ve been opening up my understanding. And one of the things that’s been really neat is that as I opened up my understanding of my interactions over the past decade, I look back into my childhood, my year, my 20s, my teen years, and say, Oh, my gosh, you were so autistic. And because I think I have the background that I do I understand how important it is to take that word, take that identity, and create my own definition for it. Because my internalized scripts, unfortunately are, you know, filled with bias. Phil, I am I will openly admit my internalized ableism. But I consider it almost a challenge or not a challenge, a pleasure to challenge those things. I am pretty sassy. I think that we all have that in common. I love I love it, though. Yeah, so that’s where, you know, so 10 years ago, my son was educationally identified and then I started to really research because I was I was actually upset with myself for I like noticed my ableism already, like what, like I went straight to the, you know, deficit model, diagnostic criteria criteria. And then they said, Whoa, this is my son. Right. And I know my son, and so that was really the beginning for me.  

LB:  Next author, JEN MALIA (JM) shares how her diagnosis started with her daughters.  

JM:  So I was diagnosed in my late 30s. And the way that I discovered that I was on the autism spectrum was actually when I saw the signs of autism in my daughter. So my two year old daughter at the time was having a lot of just, she had a language delay, and we had been taking to her to specialists trying to figure out what was going on. And I started to do hundreds of hours of research. And, you know, that was also kind of a, like, kind of a sign of my own autism that I eventually discovered that kind of obsessive, you know, desire to kind of figured out what was going on. But I eventually, you know, narrowed it down to, I thought that she was definitely on the autism spectrum based on all the research I had done. And, you know, I kept going to specialists. And they were, you know, they thought that she had a language delay that, but they weren’t convinced, because of her eye contact. And just some other sort of stereotypical features of autism, they didn’t see in her that she was on the spectrum. So I spent a lot of time, you know, seeing different, I went from like a pediatrician to a developmental pediatrician to eventually a clinical psychologist to not only diagnose her, but diagnose me on the same day.  

LB:  Now, let’s hear from other FINN GRATON (FG) as they parallel their autism diagnosis with recognizing themselves as non-binary.  

FG:  I think, you know, like many people, because my characteristics or traits were accepted as just kind of quirky fan. It took having family members that I loved and that I was trying to figure out how to understand and support better to start getting the information that said, that told me that I fit as autistic that that that made sense. And that was an easy that’s, you know, the common impostor syndrome up I know, people didn’t diagnose me, I am 50 years old, or 40 years old, there was a lot of time that I would say that I have sensory processing issues, I think very differently. And that was also similar to my trans identity, because I’ve always identified as somebody who was an I never really fit in as female or as male. And those were the options then. So it took quite a while before a non-binary identity was something that could be reflected back to me that I could say that and people go right, we know what that means. So my involvement in the autism community or my involvement in autistic issues came through both my my work as a, as a family member, my desire to be a better person and my loved loved ones lives. And my work as a as a therapist, which I came to later in my life, I went back to school at 45. So that’s, that was my, that’s the simple version of my journey.  

LB:  Next Neuroclastic founder TARA VANCE (TV) shares how she learned about her diagnosis years after receiving it.  

TV:  So I had a funny story. I was writing a book, a novel, and my husband is autistic. I knew that as soon as we started dating, like I figured that out on day one. But I was thrilled with that, because I always felt like I was way more honest than most people. And I really love knowing what someone is thinking, not worrying that they’re going to be passive aggressive, because I never could handle those things. But I just had this totally wrong idea about what it means to be autistic. And I didn’t see myself in, in like, the DSM criteria so much. So I just didn’t know that I was as well. And I wrote this novel, and I had some sensitivity readers, and one of them was a local friend who’s autistic. And when she read it, I asked her, could she tell which character was autistic? And she said, What do you mean they all are? And I was like, What? No, yes, they’re all very, very artistic. And she sent me to some things that showed more like the, the non gendered. Actually artistic, blogs and things, what it looks like in women, and what artistic people have to say about themselves. I was and I was like, Wow. Whoa. So I took some online quizzes, and I was just way up there, like, triple the, the, you’re probably artistic numbers on those online indicators. And I had a psych appointment for ADHD like two weeks from that day or a week and a half. And I went in with this giant binder full of information. And I was prepared to fight and be like, Look, I’m totally autistic. And when I said it to my psyche said, Oh, I know. And I was like, you do? He was like, yeah, it’s in your chart. So apparently, I was diagnosed at the same time as I was diagnosed for ADHD in 2006. But nobody told me they only told me about the ADHD. So yeah, I have been diagnosed for 11 years before anybody told me.  

LB:  Did you have a conversation with them about that? That’s, that’s interesting. As a psychologist…  

TV:  It was a different doctor, the doctor was, had retired, I actually love that one. But that doctor was super like anti putting people in a box. He would always say, you know, diagnoses are more like tools to get you what you need, then, then static things that you definitely always fit into, especially things like mood and personality disorders. He was like, you’ll get diagnoses for things if you need the medicine or the therapy. So I can’t I understand I couldn’t, I couldn’t even be angry at him or have a confrontation with him about why it was a bad idea because he had retired. So a bad idea not to tell me, because I have a lot of trauma in those 11 years that I feel, had I understood who I was, I could have avoided. But that was my story. So…  

LB:  Let’s finish with Australian self-advocate BARB COOK (BC), as she recounts receiving multiple incorrect diagnoses before doctors landed on autism.  

BC:  Back in 2008, I was originally misdiagnosed in 2008 with bipolar disorder, and social phobia. And when that diagnosis happened, didn’t sit with me because at that time I had been researching about autism and especially Asperger’s Syndrome, because of my partner. At that time, he was also getting diagnosed, and he was diagnosed straight away being male, or it stands out very obviously, but being female, it didn’t. So quite often were misdiagnosed, and it was from that it’s still like progressed, and I then looked into going once I got the diagnosis, that was a godsend. But just the information that was out there, especially for women, there was just such a lack of it. And from that it also progressed even more into going okay, how can I help my fellow women on the spectrum at that time? And yeah, so it’s just been a bit of a progression from there.  

LB:  Thank you for joining us for this look back and we’re excited to return with new episodes soon. Be sure to check out and check out their Twitter and Instagram @DiffBrains and look for them on Facebook. Haley can be found at and on social media. I can be found at Let’s keep the conversation going.

Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.