Autism & Self-Acceptance, with Sam Farmer | EDB 327
Autism self-advocate, author, and speaker Sam Farmer discusses replacing internalized ableism with self-acceptance.
Sam Farmer is an information technology consultant, neurodiversity community self-advocate, writer, author and public speaker. Identified later in life as autistic, he writes articles, records podcasts and presents at libraries, conferences and for corporations and autism community organizations, sharing stories of lived experiences and his opinions on a variety of topics of relevance to the neurodiversity and disability communities. A Long Walk Down a Winding Road – Small Steps, Challenges, & Triumphs Through an Autistic Lens is his first book. Hei is also Lead Self-Advocate at Floreo, which uses virtual reality to teach social, communication, behavioral, and life skills to neurodiverse individuals and others who can benefit from practicing these skills.
For more about Sam’s work and his new book: https://www.samfarmerauthor.com/
For more about Floreo: https://floreovr.com/
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Note: the following transcription was automatically generated. Some imperfections may exist.
DR HACKIE REITMAN (HR):
Hi, I’m Dr. Harold Reitman. Welcome to another episode of Exploring Different Brains. Today, I’m excited to be interviewing Sam Farmer, who’s a self advocate, author, speaker, and a good guy, Sam, welcome to Different Brains.
SAM FARMER (SF):
Thank you very much. It’s great to be here.
HR:
Well, we’re lucky to have you, Sam, please introduce yourself.
SF:
All right, so I am 55 years old. neurodiversity community self advocate, writer, author, public speaker, Information Technology Consultant, husband, father, musician, have got a lot on my plate. But I was I was diagnosed as learning disabled, just shy of three years old. This was back in the early 70s When autism wasn’t being diagnosed quite the same way that it has been in recent years. And so I went through special education, knowing about the learning disability, but not about my autism. I went through grade school college, my post college years working, got married. And it wasn’t until age 40 that I learned that I was autistic. And that happened as a result of going through a neuro psychological evaluation, which concluded Asperger’s syndrome, which at that time, was still a valid diagnosis. Asperger’s was mentioned in the DSM four. But the DSM five has been enforced for a number of years now. And come the DSM five, the Asperger’s diagnosis went away. And everything was kind of simplified down to autism spectrum disorder at various levels. But that happened as a result of my wife, wondering if there was more to who I was, then just the learning disability. She wondered about that. And after our son was born, we agreed, granted what might be at stake if we didn’t go through this journey of self discovery that we agreed that I would try to get to the bottom of what if there is something more.
So lo and behold, after working with various clinicians, and then ultimately having this neuro psych evaluation, we learned about the autism and at first it was a real shock. As you can imagine, being 40 years old, and wondering, Why hadn’t I known about this earlier in life? I guess things happen when they’re meant to happen. But eventually, I was able to work towards understand understanding my autism. I did the research, I worked with my post diagnosis clinicians from whom I learned more about what autism entails. And thankfully, I worked hard enough to be able to reach a point where I was able to not just accept, but actually embrace the diagnosis as if it were more of an identity than a medical diagnosis. And so in line with that, today, after all I’ve learned, and all I’ve been through, and in listening to the lived experiences of other neuro divergent adults, in the advocate community, have come to be a believer in the social model, as opposed to the medical model of autism and a disability, which holds that autism is not the disorder that the dominant prevailing medical model based paradigm would have it be that it’s actually what would what we would call a neuro type that if you believe in the neurodiversity paradigm, autism is a neuro type, rather than a disorder. It’s a way of being, it’s an identity, as opposed to necessarily being a diagnosis, or a condition.
HR:
You recognize that you’re special, you’re unique. And you want to work with your strong points, and maximizing your potential. And you’ve decided also, to help others. Tell us about your book. Your book is called “A Long Walk Down A Winding Road: Small Steps, Challenges and Triumphs Through the Autistic Lens”.
SF:
So after learning about my autism, after the diagnosis, or the identification, however, you want to look at it. Eventually, I reached a point where I felt comfortable coming out as autistic publicly.
HR:
Would you call that your point of acceptance?
SF:
No, I would say that I came to an acceptance of my autism prior to coming in. Where in all likelihood, I wouldn’t have been able to come out. Had I not yet been able to accept that about myself.
HR:
At what point did you accept it?
SF:
If memory serves Hackie, it was perhaps, I don’t know. Four, five, some odd years, something like that, after the diagnosis, you know, these things take time. There is what there was a degree of self esteem building that went into that, by dealt with very compromised self esteem in my younger years. Thankfully, I had a number of things going for me in my earlier formative years, that would help position me for future strong self esteem. That eventually I reached a point where knowing I was autistic, I was finally able to feel comfortable in my own skin, and feel good about myself and say, Look, if I don’t accept this about myself, my self esteem is going to suffer. Because how can you be comfortable with who you are, if you’re not able to accept who you are. And I had come to view my autism as being core to self identity to who I was that I was able to come out. This was in 2016. Strangely enough, after my mother passed away, were during her funeral. While I was eulogizing her, I decided to admit and open up about my autism to give context to all that she did. That helped me as I was growing up. And after the funeral, people came up to me and said they were removed, by my admission, and by all that I had to say about my mother that they said, Sam, why don’t you write out your eulogy and publish it? We think that if you do, it might go viral.
So long story short, I knew certain people who connected me to an organization, then known as the Asperger Autism Network aamd.org, more recently renamed the Association for Autism, and Neurodiversity, still AANE.org. But at the time, AANE had a blog site. And my very first published writing, which was a blog as a tribute to my mother was published on the AANE blog site, and it dawned on me, you know, there’s so much more I could be writing about, on the subject of autism, and my lived experiences as an autistic individual that I kept writing, and I kept writing. And then a member of the ag community came to me one day and said, Sam, why don’t you write a book, your story, in certain respects seems very novel, that if you were to write a book about it, I think it would greatly benefit the community. And so I decided to listen to him. And I started working on the book, and granted my work ethic, and that I never liked to leave things unfinished. I always like to finish what I’ve begun, that the book happened. And it got published in 2019. In part to honor my parents collective legacy, where after my mother had passed away in 2016, my father passed on a year later or so in 2017. So they’re now both deceased, that I do my advocacy, around my book around my other writings.
In my public speaking, like, I am now Hackie, to honor their collective legacy of giving to other people. So the notion of helping other people of giving of myself to the betterment of other people, really is baked into my DNA, because my parents were in what I would call the helping professions, my mother as a social worker, as a marital and family therapist, working in mental health centers, in school districts, helping kids with emotional challenges. And my father is a doctor, and with their friends, and all that they did for their friends, all that they did for me, for my brothers growing up, that I grew up in a very, very giving environment, where my book is really an act of advocacy, and of helping other people in the sense, not only sharing my lived experiences as a laid identified autistic individual, but I also bake into the book a good amount of self help content, where I’ve been very fortunate in my life, that in spite of all the challenges and adversity that I’ve faced, I’ve been able to carve out a happy, successful life, and figured that I would share ideas and insights around how I got to that point in the book, with the hope that at least some of its readers would use some of the information in the book, hopefully to carve out better lives for themselves.
But if the areas of self help that I get into, are relevant to the reader, it’s still a valuable book in the sense that it gives the reader an idea of what it’s like to be autistic, from somebody who lives it and breathes it every day, as opposed to a non autistic individual writing about autism by no fault of their own Second hand, because they’re not autistic. They don’t have the lived experiences that autistic individuals do.
HR:
Which is a segue into why and how you think society from their perspective of not from a self advocate perspective, but how can society better act and embrace autism? From your point of view.
SF:
I think Hackie that the key to that. And this is the hard part is that if we are in an environment where we feel safe and comfortable to unmask and reveal our autism, which for many autistic individuals can be a very, very frightening prospect, because of the stigma, because of the discrimination. That if we are able to unmask if we are invited to share our lived experiences, to share our true genuine selves, to the world. And if we are able to get people to not only listen, but to take our lived experiences to heart, that perhaps that can affect change for the better in terms of greater understanding and greater acceptance of autism. And where our ultimate goal, many of us, if not all of us, in the advocate community would one day to actually be able to achieve not just acceptance, but a greater sense of belonging in society. But that is asking a lot to be listened to, for our stories to be taken to heart by fear that it might be too much to ask. But I feel as though I have to at least try. Through my public speaking and through my writing.
HR:
You know, one of the things you talk about is internalized ableism. Who may not be familiar with that concept, what is it and how tell us how someone who’s neurodivergent can experience it.
SF:
So ableism is to the disabled, as racism is to people of color, that would perhaps be a good analogy. It’s discrimination against those of us who are disabled, whether intellectually, or invisibly or those with visible physical disabilities, either way, the discrimination is there. And it’s there in society. And when societal ableism is allowed to get under our skin, which is what I mean and what others mean, when they say internalized ableism, it can do great, great damage to self esteem, and to one’s sense of self. At the core of all of my self esteem related struggles earlier in life, certainly was due to internalized ableism. In this fashion. There were people who were bullying me. There were people who kept their distance from me, because I was different. I didn’t like being different. I hated being learning disabled. Like couldn’t accept that I was in the special education classroom when most of my peers weren’t. And all of that greatly damaged my self esteem, and was due arguably, to internalized ableism. So much so that I had been granted certain accommodations. Later in my grade school career in high school, Jack did valuable accommodations that would have helped me do better in school that I rejected, because I hated that I was learning disabled, and that I couldn’t be evaluated on the same terms as my peers. years, that one day I was offered, for example, because of my learning disability, to take the SATs, untimed, which would have really helped my test scores, by outright without hesitation, rejected that accommodation, insisting that I be evaluated on the same terms as my peers, wanting to be like everybody else. That is a manifestation if there ever was one of internalized ableism, which took me a long, long time to eventually overcome, not until more recent years. So that that gives an example of what I mean by internalized ableism. It’s an enemy that we really try, it should try to defeat because if it isn’t defeated, it wreaks havoc on sense of self.
HR:
And then, of course, all of us neurodivergent or not need to be comfortable in our own skin? Yes, would your point deserve to be you became comfortable in your own skin at some point. And became comfortable in teaching it to others, and correct.
SF:
To help others, which is why I self advocate is to help other people, much the way my parents helped people. I do all of this in their memory, to honor their collective legacy.
HR:
How can our audience learn more about you?
SF:
They can go to SamFarmerAuthor.com. And there, they can learn about my book, “A Long Walk Down A Winding Road”, they can read reviews about it and what it’s about. There are buttons there on the book page that take you directly to my Amazon Author Page, in the event that anybody would want to purchase the book, which if you do, thanks in advance. And then there are other resources listed. There’s a contact page from which people can reach out to me it is they want to ask me about or tell me. And I always respond to those messages when I can. And then there’s my media page, which has links to all of my best published articles. And there are a lot of them there. As well as links to other podcasts that I’ve done Hackie as well as author talk, videos, coaching videos, there’s all of that on the media page for free reading, or viewing, in addition to my book, all of which is at the heart of my advocacy mission. So it’s all of this media, in addition to my public speaking, and my writing, and then finally they can go on Sam farmer author.com to sign up for my mailing list. Where people on my mailing list receive notifications when a new article is published. They receive links to podcast recordings once they become available. And they receive notifications of upcoming virtual and in person author talks. Among other things, that people on my mailing list receive on a fairly regular basis.
HR:
Can you talk a bit about Floreo and the work that you do there?
SF:
So Floreo is a virtual reality company with virtual reality lessons that are geared towards the teaching of life skills to neuro divergent individuals. I’m the Lead self advocate at Floreo. That’s floreovr.com. And this is a virtual reality platform that uses technology assisted learning to make learning fun the videos are I should say that the virtual reality lessons are very, very well done with very, very high quality graphics, with very appealing characters that reflected diversity of individuals of different gender identities and colors and nationalities in teaching skills like how to go about crossing the street, what and what not to do during a police encounter? How to interact with your peers, exploratory less than this, if you’re at the zoo, or if you’re out in nature, interacting with animals, and all the learning that can happen when you’re immersed in those kinds of very exciting scenarios for learning life skills.
HR:
What role do you see going forward in this world of self advocacy for autism for artificial intelligence, and how it’s affecting you and all of us?
SF:
It’s a great question. I have read a lot of feedback on artificial intelligence from members of the disability community. And many of them have had good things to say about it, in terms of how AI has helped them to accomplish certain things they wouldn’t otherwise be able to accomplish. There are the obvious cautions with with AI, should it get into the wrong hands. But when it’s in the right hands, from what I’ve learned, it can be very, very helpful. And anything that can help members of the disability community in a constructive way. I’m all for.
HR:
What would you say to somebody who’s having trouble accepting their autism diagnosis?
SF:
I would tell them that there’s always more than one way to look at something. For the most part, people will tend to either look at autism through the lens of the medical model of disability or through the social model. I subscribe to the social model, because it destigmatizes autism in terms of identifying it as a neuro type, which is not something to be afraid of, which is something that is worth embracing whatever the challenges might be, that it brings. And that if you view it as an identity, or as a neuro type, as a way of living rather than a disorder, you can see Hackie how that can help sense of self and self esteem. It’s a way of destigmatizing what has been severely stigmatized for too long now. And it’s words like disorder, some have described autism, even as a disease, heaven forbid, or as a medical condition. And when you look at it that way, you can see that if your autism is core to who you are, and for me it is that that can do great harm to self esteem, looking at it as a pathology, as something that needs to be cured as a problem to be fixed. Versus a different way of being, which because we are different, just like so many others who are in the minority, with respect to race, with respect to gender identity, that what’s different in society, unfortunately, tends to be pathologized and can do a number on you in terms of your sense of self. That I would encourage folks to think of out how they can look at their own autism. And it’s all in how you look at things.
HR:
Look at your strong points, look at what you’re able to do.
SF:
As a neuro type, yes, autism isn’t just about challenge granted, we have our challenges, they’re very real. And they’re very different kinds of challenges that I have found society has a very difficult time accepting that when you have differences, that are at odds with societal expectations, around socialization, around behavior, around communication, thinking, learning, then that’s at the heart of, of where the struggle is. And that’s where the disability aspect comes into play. I am indeed disabled. But what disables me more than anything, are those kinds of societal expectations that are very disabling to many of us, where we don’t behave or communicate or learn, we’re socialized in the way that society expects us to, which is what I believe, led to autism being thought of as a disorder in the first place. But societal expectations are external. I am not intrinsically disabled. As much as I feel I am disabled, I external societal factors. That makes sense. So depending upon how you look at disability, how you look at your autism, and I’ve met people who, who believe in the medical model, they don’t want anything to do with their autism, they would love for it to be curable. I get that. That makes sense to me. That the way we look at it is is really going to be determined by who we are, and our lived experiences. I look at it one way other people look at it another way. This is me. Other people agree with me. Others would disagree. You’re going to have that in any community, as diversified as the neurodivergent community is. There are going to be disagreements and different ways of looking at things but the choice is yours as to how you look at your own neuro divergence your own autism, or maybe it’s ADHD, or a learning disability or what happy all of which fall under the neurodiversity umbrella.
HR:
All right, Sam farmer, it’s been such a pleasure to have you here at different brains. Your book, “A Long Walk Down A Winding Road: Small Steps, Challenges and Triumphs Through the Autistic Lens”. And we look forward to seeing you more here at differentbrains.org. And I want you to keep up the good work and that positive attitude that you have that’s so inspiring to all of us.
SF:
Thank you very much Hackie.
