In this episode, Harold Reitman, M.D. speaks with Sarah Howard. Sarah is a member of AASCEND, a meet-up group organizer, and an adult on the autism spectrum. She discusses creating opportunities for the neurodiverse to socialize, the challenges of equal gender representation in organizing events for people on the spectrum, and her own personal challenges related to accomplishing goals.
For more about Sarah’s MeetUp group, visit: http://www.meetup.com/Central-Valley-Aspergers-Syndrome-Meetup/members/?op=leaders
For more on AASCEND, visit: http://www.aascend.org/
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HACKIE REITMAN (HR): Hi, I’m Dr. Hackie Reitman, welcome to another episode of exploring different brains, today we have the great pleasure of speaking with someone I recently met out of San Francisco State University, at the AASCEND meetings there, and we have Sarah Howard . Sarah, welcome!
SARAH HOWARD (SH): Thank you, welcome to you too.
HR: Well thank you so much for being here with us, that’s terrific!
SH: Thank you, thank you.
HR: Now, we met out there and I was very impressed with so many of the things that you were doing. Why don’t you introduce yourself to our audience and tell us a little bit about yourself.
SH: Alright, I’m on the autism spectrum, I was diagnosed when I was in 2001 so I was 30- 29, with autism spectrum disorders, and in autism spectrum disorders I’m very high functioning, I drive a car, I live in my own apartment, I run a meet-up group for autistic adults in my area of the central valley in California.
HR: Now, in your meet up group, what is the break down, how many guys and how many gals are there?
SH: There are many many men, and there are not as many women, and though I think the women are afraid to come out to a meet-up group, because of the fact that there are so many, that is so male dominated, by men. I mean, they don’t…I mean I shouldn’t have to make another meet-up group that has only women in it, I think.
HR: Well, is very interesting cause I find that a lot of the female Aspies that I know do not want to go to meet up groups for just that reason.
HR: And Becca Lory, one of the heads of GRASP, also on GRASP, published about the unicorn recently and she feels very much, now I was wondering how you feel, that females are very much under-diagnosed, and if they are diagnosed they kind of don’t want to come out of the closet more or less if they have Asperger and she feels it’s incorrect that it’s there so many more males than females, what are your thoughts on that?
SH: I agree with that a lot, I agree with a lot of what she has to say, unfortunately as a result of running my meet-up groups, I’m aware of how diverse the spectrum really is, as far as men being able to grow up and change, or not grow up and stay stuck in their same age back and they act very much younger than what they are, I’m aware… but I have some women who have signed up and who haven’t shown up for my meet up group at all, which is very frustrating, to me.
HR: So Sarah, that’s a big issue, the differences between men and women, boys and girls, on the autism spectrum, when it comes to self identifying, self advocating, getting involved in social situations.
SH: Right! I feel that many of them would like to be introverted, rather than extroverted, and I’m getting the extroverted Aspies on the spectrum, who wanna go out and meet people, whereas most of the spectrums stays in and works on the computer, or plays on the computer, or does whatever on the computer and doesn’t interact with anybody,
HR: What advice do you have for, say a person who is a young adult who has Asperger or has autism, who has the skills to go out there but it’s much more comfortable to stay in their safe place, and they don’t want to…what advice do you have for them overcoming their anxiety.
SH: That anxiety, I would suggest than going to see a psychologist or psychiatrist, and giving them either.. or going a different, a whole different other route called handle.org, which is a holistic approach in development and learning efficiently, and getting at the real root issues, of why they won’t get out of their house, or why they won’t leave their apartment, either try medication or try the handle approach that… I never tried the handle approach but I heard that it deals with the root issues, so… but my experience is to see a psychiatrist and psychologist and talk about your issues and kinda push yourself out the door, even if you don’t wanna go out the door.
HR: And maybe talk to… another good reason to go to a meet up is so that you can talk to a colleague like yourself, you know, and just interact, say, we are all in this together.
SH: Yeah, that’s true, yeah, yeah.
HR: Now, do you have a job?
SH: Yes, I do, I work ten hours a week, cooking food, heating up food, for children on the autism spectrum at a private pre-school, for specifically, for autistic kids, autistic children.
HR: And what are your other activities? what fills up your day (—) during the week, you have 10 hours of work there.
SH: I work right in the middle of the day, and I go get… I go to the doctor and get an allergy shot once a week, I talk to my therapist once a week, I make sure, I check in… I just make sure that I’m ok, that I’m balanced, every once a week, what else do I do? I volunteer at a local art center, community art center and they have various performers come in and I’m trying to volunteer on the house side now, and I also … what else do I do? I’m trying to thing what else I do, I make sure that my mother is ok. That’s my big job, she’s 78 years old, and my dad is living in the suburb place, for people with Alzheimer’s and dementia and he’s in his 80’s and we don’t know how long he’s going to live, but he’s obviously very affected by the Alzheimer’s and dementia that we can’t take care of him anymore. So I go to my mom’s house once a day and make sure that she’s ok. And we just kinda check in with each other, she has a dog and I take the dog for a walk, or I just check in with the dog, you know…she’s just happy to see me.
HR: You are a very good daughter, that’s great; so you think of ever going back to school?
SH: Yes I am, I’m thinking of studying… I studied Geography and History, when I first went to the junior college I didn’t apply to any colleges after… when I was a senior in high school ‘cause I didn’t think that I would get anywhere, so I just went to my local junior college, and I had really good grades, and I transferred from IJC, from Industrial Junior College to UCLA.
HR: Wow, nice
SH: It was a big jump.
SH: But it was good and bad ‘cause it kind of…opened my eyes to many things and then it made me afraid of some things as well. So anyways, so anyhow. It was too big, I mean, I love L.A, but it’s kind of…it’s overwhelming, for me, specially that part of L.A.
SH: Yeah, it’s just overwhelming.
HR: One of things I like about Boston, when I went to Boston University in the 6 year medical program, was the size of the town to me felt just right, there was like 50 universities all around that area, but, you could get places by the trolley and nothing was too far away, and it wasn’t like really huge, like the New York city or something or in L.A or in San Francisco, it was more like neighbourhoody kind of thing.
SH: Yeah, I need something small like that, I need to go back, I’m hope to go back to school at my local state university which C(—) University in Turlock which is an even smaller town.
HR: And what are you going to major in do you think?
SH: Either Geography or political science.
HR: How do you make a living in Geography, like what are the jobs associated with geography.
SH: That’s a good question, you could become a… I’m not really sure..
HR: What do they call them, like a cartographer for Google or something with maps
SH: Yeah.. you could become a cartographer, you can work for a (—) there’s E&J Gallo Winery in Modesto, and they are looking to hire people that studied Geography…
SH: They are the biggest winery in the world.
HR: why do they need to hire people who’ve studied Geography?
SH: Because they own all these vineyards all over the place, all over the world, and they possibly need to understand the dirt and the terra firma, that the vine is grown under and on, the vines grow on and then, you know, like every wine has a certain taste to it. And so, essentially I could get a job maybe with them if I… I don’t know, if I finish that program at Stanislaus State, but also I think of going back to France, I lived in France for 3 months, and then I was able to pick up the language,
SH: Really well, pretty well.
HR: Well you are very- you know, you are very intelligent woman, you diversifications are fascinating, with all those skills and everything.
SH: Thank you
HR: How did you get involved with AASCEND
SH: I’ve got involved with AASCEND through my therapist, through the woman who diagnosed me in Sacramento, through Fair Oaks and she was in Fair Oaks and she’s moved on to doing chronic pain care for people… ‘cause I guess that’s more profitable now anyway in medicine but anyway, she told me about AASCEND and my parents and I went for the first two meetings and then I was able to go on my own for the first time, and to the last meeting and the last two meetings and then I was able to go on my own for the first time to the last meeting or the last two meetings; my sister lives in San Leandro, so we’re just close to San francisco, so I’m able to bark my way in, and go to meetings and stay with her. So sometimes I do, sometimes I don’t. If they want me there then I am able to get there.
SH: Tell us, what gives you the biggest challenge everyday and how you overcome it?
SH: My biggest challenge is actually getting out the door I would say. Once I get out of the door, once I’m out the door, once I’m doing my job, once I’m at my job, I’m totally comfortable in my job, the job that I have is great, and I work with completely non-judgemental people, who are very patient, who are very patient and who also are able to deal with people with diverse brains like autism, I mean they are all very sensitive to what you are interested in and what you wanna do, later on in life or how good of a job you do and are doing in your job, and I’ve held on to this job for longer than a year and it’s the longest I’ve ever held on to a job, so it’s amazing. And they’ve dealt with all my quirks, they’ve dealt with all my getting late there in the beginning and not knowing how to time manage very well, and now I’m getting better at managing my time.
HR: That’s great, congratulations on that, that’s wonderful! When you say you have trouble getting out the door, I assume that’s a combination of anxiety and time management issues.
SH: It is. You are right, you are right. One of the tools I mentioned in the Asperger tool book that I think some people find helpful, is a check list, so you know when it’s time to go out the door, you don’t have to have that anxiety you forgot to do something cause it’s checked off the list.
SH: No, that’s very smart, I haven’t thought about that actually, but that’s a very good suggestion, ‘cause I’m very much a list girl, in my life, when I make time to make lists, I mean, I have notes in my iPhone, I have notes, I have reminders on my iPhone, and I have, I mean I make notes on a, you know, on a journal paper, or stuff needs to be done.
HR: Is there one thing or some things that you’d wish all of society realized about neurodiversity and those of us whose brains are a little bit different?
SH: I wish the society was a lot more accepting of people with diverse brains, I feel we have a long way to go with that issue. I know society is changing a little bit but it hasn’t changed enough and I know that other societies are further behind than we are especially in France, even though I wanna go back there, they are even further behind than the United States. United States is about 20 years ahead of France, according to a friend of mine, and another friend of mine, and I think is very difficult to be perceived as being clinical neurotypical when you are not, because you can present, I can present so well that I’m very extroverted but I struggle at some things, I’m getting better at it and I’m outgrowing some of the things that I had trouble with in the beginning of my life, but I still act very young sometimes, and I feel I don’t…I feel like I don’t… I’m not able to run from things that I’m trying to make the same mistakes over again…
HR: Do you find it difficult to read on social cues?
SH: I do, yes, I just told my mom about it, a very unfortunate situation where I was the bite of somebody’s joke, at the volunteer job that I have unfortunately, and I took it very personally and there was an orientation again to become a concession’s volunteer, I didn’t go last night because I was still so upset, because this woman unfortunately doesn’t understand people with diverse brains, and has… anyways, decided to make me the object of her joke and I just, I had to bite my tongue and move on. And I didn’t say anything but I wanted to defend my self but I didn’t know how to defend myself right there, so I feel that we have ways to go before society accepts us, as we are.
HR: What is the biggest single piece of advice you might give one of your female fellow Aspies, who’s entering adulthood.
SH: I would give them the advice to continue to stay strong, don’t give up, never give up on yourself, never stop believing in yourself, even though people around you don’t believe in yourself, don’t believe them or bullying you, I was bullied a lot in school and I didn’t understand why, and I think it helped me become much stronger person who I am now, and I think to never give up on what your dreams are, if you have big dreams continue to dream big, if you wanna help people go for it, if you wanna help yourself go for it, if you wanna help… if you just wanna do something related to what you wanna do that’s cool too; I grew up in a family that was very much in the helping professions so I come with the helping brain, I come with a helping brain, so anyhow, I would suggest to never give up on what you wanna do in your life, that’s what I would suggest.
HR: We’ve been speaking today with Sarah Howard, from California, here at exploring different brains, and Sarah, it’s been a real pleasure to have you on our show.
SH: Thank you, it’s been a very nice pleasure to be on your show as well
This video is owned by Different Brains Inc, kindly donated by it’s original producer PCE Media LLC.
Different Brains® Inc. founder Harold “Hackie” Reitman, M.D. is an author, filmmaker, retired orthopedic surgeon, former professional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate. However, it was his role as a father that led to the creation of the DifferentBrains.org website.
Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brains tumors, and underwent 2 brain surgeries before the age of 5. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for children’s charities (to which he donated every fight purse).
Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and produced a film based on her experiences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity (released by HCI books, publishers of the Chicken Soup for the Soul series).
This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Convinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains In Between”.
In the company’s initial years of operation, Hackie self-financed all of the content on DifferentBrains.org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at conferences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains. Separate from Different Brains, Hackie is the founder and CEO of PCE Media, a media production company focusing on reality based content. He recently co-executive produced the documentary “Foreman”, the definitive feature documentary on legendary boxer and pitchman George Foreman.