Life on the Spectrum: Women Sharing their Unique Experiences

right now i am very excited to um introduce our beginnings of our panel this afternoon so i want to introduce dr nicole sparapani who is an assistant professor in the department of education and faculty here at the mind institute at uc davis she has a research program looking at understanding the needs of students with autism she's actually a speech pathologist and looks at student engagement and how we can best help students learn and does some amazing work in that area she is going to co-moderate our panel and i will let her introduce her co-moderator and our panelists so welcome nicole i too am absolutely thrilled to be here today co-moderating the panel discussion with my colleague dr jacqueline feedy i'm even more excited because i have the opportunity to introduce our four panelists uh lisa maylins chloe rankin erica mineo and kristen godfrey so each of our four panelists have a unique experience and perspective on autism and a very powerful story to share with us all four of the panelists are also affiliated with the university of california and davis and two of them have recently become alumni congratulations to lisa and chloe and also just overall welcome ladies we are very excited that you're able to be part of this year's summer institute and we really look forward to gaining new insights from you so before we start our panel discussion i want to give you a sense of how things are going to go each panelist has created a video that's about five minutes in length about themselves that they will be sharing with us before we have a chance to meet and talk with them they have each prepared answers to about two or three questions uh and dr fedy and i will ask them take turns asking them the questions uh once their video is over at about 12 20 after each of the panelists have shared their stories we're going to open up a general question and answer session in which dr fedy and i will ask the panelists any questions that you might have for them if you have questions and comments in the meantime that you want to share please send them using the q a feature on zoom again we'll address your comments and questions at the end during the q a session okay so before we have a chance to talk with our panelists my co-moderator dr jacqueline feedy will share her story dr feedy is a super fun autistic advocate and developmental psychologist she is an assistant research professor at the university of rhode island in the department of psychology and she currently works as a community engagement research associate on the institutional development award from the national institutes of health in the state of rhode island that's a mouthful her research interests include immigration policy autism program evaluation and she uses her experiences to help educate others about autism through lecturing blogging and consulting in schools in school districts in addition dr feedy is the one of the co-founders of autism level up which he's going to talk to you about today it's an organization an organization focused on education and accessible resources in an effort to support the leveling up of society when it comes to autism and neurodiversity so welcome dr feedy and take it away well thank you so much it's so great to be a part of the mind summer institute and to help participate in and moderate this panel for all of you out there you are attending an event about autism where there are five autistic presenters and that's absolutely wonderful but the fact is it's also rare and it shouldn't be when we're thinking about you know autistic experiences participation and input from autistic people are so critical to ensure that we research um you know what we research how we research it and how we interpret and use what we find are all in line with real needs among the autistic community and carried out in ways that are respectful of it so why am i moderating today well for one as nicole pointed out i am a research professor at the university of rhode island i am working in community engagement on a clinical translational research grant and in that role i support researchers in connecting and collaborating with their communities of interest with whatever they may be researching and that's to better inform their research at all stages from you know developing aims and questions through surveys recruitment strategies methodologies all the way through dissemination and communicating those results back to the community in a way that makes sense um and of course the aim of that is to improve the translation of research to practice so you know you can have the most awesome fun innovative treatment finding program intervention etc what have you but if it doesn't resonate with the community or if it's not at all accessible to them or if it's aimed at outcomes that are not of meaning to them it's never going to get used or if it does it's not going to be that useful so that is important to me and this setup here where we have seen research presentations and now we will hear from community members is an important model in leveling up society and that brings me to my next point why else am i moderating um i'm an autistic self-advocate i have a partnership called autism level up with dr amy laurent she is a developmental psychologist a researcher educational consultant she is a co-author on the certs model and she is an ot and she is also out there watching right now and it's really fun to call her out when i know that she's muted and cannot respond in any way but anyway we are a neurotypical and autistic collaborative and we work together to create free downloadable resources for the autistic community and the level up part of that name is really fun but it's also about the power of the partnership i level up her thinking and she levels up mine and we aim to get educators and school districts and researchers um and clinicians to level up by considering autistic autistic voices in all that they do and you know it's that kind of real uh consistent collaboration between stakeholders that it really needs to become the culture of research and practice and also please feel free to check out our resources at autismlevelup.com it's on the padlet resource we're also on facebook and by we i mean amy because i cannot handle a social media handle so that is a little bit about my background in terms of why i'm monitoring i also want to spend a bit of time in the time i have i'm telling you about my own story as an autistic woman it really ties in nicely to some of our earlier presentations and just consider this an opening act for what you'll hear from our panelists in just a bit so at its core i'd say my story is that i was an undiagnosed misdiagnosed massacre extraordinaire and for some context i went to school between around 1992 to 2006. during that time much less was known about autism and autistic girls and women were largely unheard of at this time so when i frequently exploded towards my brother hitting him in the head with a metal baseball bat throwing a large boulder at him all because of the sound of his breathing or when i less frequently did similar things towards peers i actually once threw a uh one of those card catalog drawers at a classmate also because her breathing was so disregulating to me just for an example no one at all considered hypersensitivities in autism the same could be said about the all-out meltdowns that occurred anytime someone tried to put socks on me um you know when i never sat still and needed constant movement in some way they did suggest that i was adhd when i wet my bed and my pants through my senior year of high school consistently no one suggested maybe this is hyposensitivity or challenges with intraoception um associated with autism these just weren't things that were considered especially for girls and women at in the time when i lost 30 pounds in a month from simply not eating enough no one considered whether i perceived hunger they went straight to restricted eating and anorexia and it is disordered eating but the underlying cause of it um is much more relevant to autism than these other things they were throwing at me when i never could and still cannot identify what i'm feeling and express my emotions in words again no one considered autism i got accused a lot of keeping everything in as if i was trying to hide it but really i had no idea how to describe what i was feeling what it was that i was feeling or how to get it out in a way that was meaningful to anyone else and i could honestly talk for the remainder of the panel time on experiences of my childhood or what my profile was like but i'll also say that i was extremely lucky my environment and the natural supports that i had in place just happened to be really good fits for my sensory and social profile for example i played soccer i was a goalkeeper so i threw myself into the ground hundreds of times a day and existed in a world that centered around my passion and where all of my social interactions were around that task at hand and it was very highly structured and a very scheduled and predictable world if you have kids now or you know of kids or people or you yourself played premier or regional level soccer you know the degree to which life is just extremely scheduled and predictable just one other example of that goodness of fit i never ever ate in the cafeteria i would just get up and walk around the school that place is a nightmare uh the smells of food the noise level of people who are packed way too close to another one another yet they still are screaming conversations about nothingness i would go to pe class or i would roam my school building and they let me no one forced me to stay in that environment so i had these really great natural supports in place until my first full-time job now my first full-time job was easy in terms of its tasks i had it was a program evaluation job i had been doing things like this um for almost six years at that time the tasks of the job took me probably less than half the time of a full-time job but the environment was impossible two weeks in just two weeks i was completely drained of energy all the time hopeless i was confused i thought the best part of my life was over i was coming home every single day and either melting down kicking through doors breaking furniture destroying things in my home or shutting down sleeping for like 24 hours at a time though at the time i didn't have these terms melting down and shutting down for what was going on i wondered if i was depressed or if this was anxiety i had suicide check-ins with myself every few days and every time i would say no i don't want to die but it's like i can't figure out how to live it's like i'm not cut out for this world and i was masking constantly all the time and i can't even begin to describe to you all the ways i was doing that or the degree to which it was beating me down and you know the research we heard about this is great but we have to combine it with those livid experiences it's so important because two weeks that's how long it took for the mask to bring me to burnout which is really the main reason why i'd say to earlier questions uh no we don't all do this people use social fakes yes but if you really believe everyone is masking then you're telling me i just can't hack it and that that thing seriously brought me down so there's lots to be done in that field but it was through reaching this absolute low where all my protective factors were way down all my risk factors were way up and um i was in an environment where i was masking all the time that i came to discover my true autistic self and it's only through that understanding that i was able to keep that job through disclosure to my co-workers through modifications and accommodations and new strategies and tools that lined up with my profile and needs um and it shouldn't be the case that autistic girls and women have to reach some sort of mental health crisis or go through several misdiagnoses in order to learn about their true identities and needs and in order to be able to advocate for their own needs or have someone appropriately advocate on their behalf it shouldn't be the case that we have to put on a relentless and brutal act to get by at the expense of our mental and physical health so that's why it's so important to listen to autistic people and consider the experiences of autistic girls and women the more our stories and perspectives and realities are known by educators and clinicians and researchers and families the better off we'll all be and the fewer girls and women there will be who have to go through this extremely confusing very unhealthy and really impossible to function type of burnout and mental health deterioration so that's a fly by look at my story and um i think i'm pretty much exactly at at the time here where i get to say without further ado let's get into the headliners of this show you will have the opportunity to hear from four more autistic girls and women here so i want to first introduce lisa marlins and invite her to briefly turn on her camera if she'd like to put a face to her name um so lisa melens she is a recent uc davis graduate and now works as a bioinformatician while while attending uc davis she won the peter hayes writing prize for her essay on neurodiversity and star trek awesome when she isn't programming she enjoys sci-fi graphic design and jewelry making so we're going to begin by watching a video that lisa has prepared for us all right hi everyone my name is lisa i'm extra happy today because this morning i accepted a full-time job as a bioinformatician and yeah this is a really big day for me because i've been working towards this for years and years and a big part of why i got into bioinformatics is because i'm autistic so i'm really excited to share with you how my autism has affected my life in both good and bad ways i was diagnosed about four years ago while i was a student in community college and it actually came as a surprise to me and my family i was struggling a lot with anxiety so i went to a neuropsychologist to get that diagnosed see what was going on there and it took several hours like a whole afternoon and after talking to me and talking to my dad and grading the gazillion questionnaires that i filled out the psychologist diagnosed me with generalized anxiety and autism i wasn't expecting it but it made so much sense it explained so many things about myself that i didn't understand before like why i've always felt different than everyone else and how i felt like my brain just worked differently and and it was so validating to understand why i always felt that way and to connect with this whole community of people who are different in the same way as i am so it was definitely a positive experience for me i'm glad that i made that appointment and i got diagnosed and another thing about autistic folks is that we tend to have very intense interests and we'll spend a lot of our time on a favorite subject not because it brings us any tangible gain but just because it brings us joy and for me as a teenager i kind of got into programming when i was about 12 years old i spent a lot of my spare time as a teenager just like messing with html and css and a little bit of javascript but it always felt like a hobby to me so i never really considered computer science as a career so when i graduated high school i decided to study biology but i couldn't figure out what i wanted to do with biology so i went to the career center and i talked to the career counselor and he pointed out this field of bioinformatics which combines biology and computer science and it was a light bulb moment it was like this is what i'm going to do with my life i found it and i transferred out of community college here to uc davis and i got into a research lab doing bioinformatics and then last august i got an industry internship at a local biotech company doing bioinformatics and just a few weeks ago i graduated and the company offered me a full-time job today and i accepted so um yeah this is this is so amazing i'm not here to convince you that my life is perfect or that i have everything figured out or that my life has been devoid of struggles related to my autism because i still struggle a lot with anxiety and speaking my mind and group conversations with people but at the same time finding a fulfilling career and being able to connect with people those things are not unattainable for autistic folks i think if we if we honor ourselves and our own perspective and if we find people who accept us the way that we are we can find those fulfilling careers and make those meaningful connections and our dreams are not out of reach just because we're autistic wow um what a great video lisa thank you so much for sharing um and it seems in your video that you're very comfortable uh talking about diagnosis and autism are you truly comfortable talking about your diagnosis with others it's definitely a struggle for a long time i i wasn't comfortable at all talking about my autism because i was worried about people judging me i told some of my close friends and teachers that i really trusted but in general i kept it to myself but about a year ago i decided i wanted to talk more openly about my autism last summer i was helping my lab with an outreach workshop for high school students i'd been doing research with this plant genetics lab and they did a workshop over the summer to introduce genetics concepts to local high school students and it made me really happy that they asked me to help develop one of the activities and then to proctor the activity during the workshop anyway so during this workshop i was going around and helping the students and answering questions and one of the students told me she was autistic and she asked me if i knew about the genetics of autism having no idea that i was autistic just because i worked in this genetics lab and i was helping with this genetics workshop so i told her i'm going to tell you a secret i'm autistic too and her face lit up and i could see that most of the other students were pretty much done with the activity so i just sat down and talked with this young lady for the rest of the workshop about growing up and going to college and life as an autistic person and at the end of the workshop she told my colleague who was leading the workshop that it meant so much to her to see an autistic young woman like herself going to university and doing research because she wanted to do the same thing so at that moment i decided that having interactions like that was more important to me than my fears of others judging me so after that i stopped trying to hide that's amazing and certainly um autistic role models for young autistic girls and boys is so important um you know you can't be what you can't see so i'm all for that um and that sounds like a really positive time when when you disclosed your diagnosis how do um how do people generally act when you tell them about your diagnosis i've had very positive experiences opening up about my autism i told the people that i worked with at my lab and they were all super supportive and appreciated the perspective that i brought and i've told my colleagues at my current job too where i'm now working full time several months ago i was chatting with one of my co-workers and he was talking about this very promising natural medicine that they found all kinds of uses for it's currently being used to treat cancer and it's also being tested for a bunch of other things including autism and i said i wondered what specifically about autism they wanted to treat because if it's for a symptom that autistic folks find bothersome like anxiety then that's certainly helpful but if it's to cure autism even if that was possible i don't think it's wanted i'm autistic and i don't want to be cured i'm happy with myself the way that i am i i don't want to be normal i just want to be accepted the way that i am and my co-worker told me yeah you don't need to be cured we like you the way that you are which i thought was so sweet and i've told the rest of my team now too so now everyone knows it was actually more stressful before when i only told certain people because i would always have to ask myself am i sure that i want to tell this person is anyone else in the room that could be listening right now would it be a burden on this person to expect them to not tell anyone because the last thing i want to do is stress other people out because they feel like they need to keep secrets for me so when i decided to be a hundred percent transparent like i even put the actually autistic hashtag on my twitter profile it was such a relief wow thank you so much lisa again thank you for sharing your story and for your really amazing video i think your story is important and really really powerful so in your video you mentioned that you weren't diagnosed until you were an adult from your experiences why do you think this is the case i wonder that a lot actually especially since late diagnosis seems to be quite common among the autistic women i know and i think what usually happens is people don't seek diagnosis until they hit a roadblock in their lives in grade school i kind of slid under the radar there were definitely signs of my autism looking back but it really started to show itself more as i got older i remember in junior high and high school i felt kind of isolated and lonely like i had friendships with my classmates but i didn't really have the close friendships that i wish i had but at the same time i didn't want anyone to know that i felt lonely so i did everything in my power to hide that so ultimately the roadblock that sent me to the psychologist was my mom passing away and that's why i decided to go to community college first instead of coming straight to uc davis and even after a few years of staying in my hometown and going to community college and trying to rebuild the strength that i'd need to move away and go to university i was still struggling constantly with feeling anxious and not knowing my purpose in life and just feeling out of control so that's what pushed me and my dad to go to the psychologist to try to address the anxiety that i was feeling but turns out i've been autistic this whole time and i had no idea and that was such a game changer for me because uh getting that diagnosis diagnosis explained all of the all of these subtle but pervasive struggles that i faced my whole life and it's helped me to be more accepting of who i am and also to make more informed strategies on things that i do want to change and improve about myself like feeling less anxious and being more socially outgoing and building deeper friendships again thank you so much for your openness lisa i think that um again your story um is something that is going to provide a lot of insight for others that may be feeling similar to how you felt growing up so do you have any advice for autistic individuals or parents on finding fulfillment yeah i would say use your autism to your advantage i think our greatest strength is our intense interests which i mentioned briefly in my introduction video for anyone not familiar with this term it refers to how autistic kids and adults tend to have very deep interests in particular topics i've also heard this called restricted interests but i think that sounds a lot more negative than it needs to because our intense interests bring us so much joy and can even translate into a career so i hope parents and teachers can really encourage those interests in kids with autism even interests that might not seem to be career related on the surface i had a strong interest in video games first and that led me to a gaming community that introduced me to html which ultimately led me to bioinformatics which is the career that i'm currently in my my colleagues even tell me that they envy how i started coding when i was so young and honestly i have my autism to thank for that i'm sure my parents got annoyed with me talking their ears off about nintendo games but because they gave me that space it allowed that domino effect to occur that led me to my career field and i think in general passion creates more passion and my advice for autistic individuals themselves i want you to be your best autistic self just be you you don't have to change who you are for anyone because your best version of yourself will always be better than your best version of someone else i love this um i wrote down passion creates passion um amazing okay so i'm just gonna ask um the last question i i i'm so curious i i wanna hear about your essay on neurodiversity and star trek yeah yeah that's a fun story i'm so glad you asked um during my first quarter at uc davis i took a first year seminar on diversity in star trek and we talked about how the star trek series has always been socially progressive ever since the original series came out in the late 1960s they use stories about aliens as metaphors for social issues that are happening now and they show how people who are so different from each other even people from completely different planets can learn to understand each other and live in harmony anyway i've always identified with this character named data from star trek the next generation and data is an android he is an artificially created life form and when i got diagnosed with autism it started to make sense why i liked this android character so much so i wrote an essay about how data's experienced as an android among humanoids is a lot like the experience of being an autistic person among neurotypical people and even more importantly the way the series depicts depicts data and how the other characters interact with him supports autism acceptance and the neurodiversity paradigm so i wrote that essay and i entered it in the first annual peter hayes writing contest with the uc davis english department and i think they really appreciated my perspective because they chose my essay to win that's awesome congratulations on that that's very very very neat i'm not a big star trek fan but maybe you've convinced me um to actually watch it um and check out data i love that so again lisa thanks so much for being here today thank you for your openness thank you for sharing your story um and also a big congratulations not only on your recent graduation but on your new job yeah thank you yeah amazing my job now is to introduce our next panelists um i'd like to introduce you to chloe rankin chloe is a uc davis alumni and a motivational speaker on autism teaching others about the invisible brilliance and potential in autism and sharing her unique her unique perspectives and testimony in overcoming challenges to becoming successful and navigating adversity in the education system chloe is also an overachiever that now has three college degrees she's won many awards as an honors student and she plans to pursue graduate school at harvard university i've also had the chance to know chloe over the past couple of years and she's done a lot of presenting in my classes um and her talks are very powerful so very excited that she is going to be here with us today um before chloe joins us though she has put together a video to share with us so we're going to go ahead and watch that video and then we will jump into the q a hi i'm chloe i'm currently a pre-grad student on gap year and i'm a proud uc davis alumni i am pursuing higher education with the intent of obtaining a graduate degree i graduated from university of california davis in class of 2019 with a bachelor's of arts degree in psychology with a minor in education and i'm aiming to go to harvard university for grad school [Music] part of my academic trajectory has been traveling the globe i've taken an interest in learning about other cultures of the world i studied abroad in buenos aires [Music] argentina [Music] of course before i came to argentina i knew i would love the country and do well here i learned some tango dancing even though i slipped up i went on many excursions and was trying hard to improve my spanish while i was here i fell in love with yerba mate empanadas the next year i interned abroad as a teacher in chiang mai thailand teaching english at a thai temple school the best part of my experience in thailand was being adored by the children i was teaching and them running up to me every single day to hug me the other fun part was doing a motivational speech on autism to the entire school i was interning and at the end of the speech the teachers gave me flowers the 20th century is kind of my century of stuff i like i love the 80s and 90s decades a time when there were cassette players and i loved the 80s and 90s because it was big hit music in my generation and it's music i grew up with because i was a 90s kid listen [Music] i also love movies from the 80s and 90s too that's mostly one of what i love to watch fatal attraction is my favorite 80s movie um in the past year i've gotten really fascinated with vintage boutique styles um pink and black is really my style because it's cheek and bold and it's part of what makes me a unique and interesting person and i love buying dresses and accessories from the 1940s to the 1960s because women back in those times wore rockabilly dresses stiletto heels and pillbox hats as you can see now i'm actually wearing a 1950s dress and a pillbox hat [Music] she's [Music] [Applause] [Music] [Music] [Music] oh my gosh chloe thank you so much for that also i've got a couple of different songs running through my head now so thank you again for that it's my pleasure to be here today i'm so happy to have this opportunity to speak to the entire world about autism so i'm very excited that you are going to be here or that you are able to be here with us today too um chloe i also wanted to just say fantastic photos not only of yourself but of yourself around the world you've really um you've you really have again have a lot to share oh thank you so much so i want to start off chloe with um asking you uh about your view on autism and how it's changed over your life um and in addition also will you share your view about your concept of becoming an overcomer yes so the first time i knew i had autism i was informed that it was something that makes you think differently than other people when i was diagnosed the prognosis stated by the doctor was i would have a difficult time tackling real world situations like holding down a job living independently and registering for a class so um as a kid growing up with this diagnosis i didn't have a broad understanding of what autism was and a solid foundation of what it meant to me as i got older and improved my personal development autism became a matter of my own perspective which is finding my highest levels of functioning discovering the affirmation of human ability and acknowledging the strengths along with the challenges of it my accomplishments and achievements became a testament to show what i was truly capable of both intellectually and autonomously this is when my experience with autism became a discovery and capability through achieving aspirations and pursuits by effort skill and courage and a drive to influence and inspire through uniqueness as i got close to finishing as a university undergrad my experiences with autism became an inspiration to many as i started motivational speaking and sharing my story and testaments with many students educators community members and the world i began to see it as something that could make me stand out remarkably in my career due to the exceptional intellect that i have in understanding it i have a distinctive view on autism and it means several things to me first it is an intellectual variance that empowers me to perceive things differently by helping to create new ways of conceptualizing things it empowers me to utilize different thought processes in authentic ways and by making use of cognitive capacities and distinctive skills that it doesn't inhibit are things that can be applied in overcoming intellectual challenges it is also a self-fulfilling prophecy in which victories with autism pays itself forward and is an investment for improvement in which abilities can manifest and be approved upon and so-called deficits can be worked around the concept of being an overcomer is demonstrating ability beyond difficulty to endure opposition by utilizing strengths to reach your next potential so it's all a matter of how you see yourself as who you are and developing your own understanding of what autism means because everyone's life experience with autism is not the same and the main purpose of being autistic is being functional not normal all the time and my theory on why we have an increasing prevalence in on of autism and just in today's society is is humanity is changing neurotypically characteristically and exceptionally in order to bring new forms of human variation to the world and i now call autism my condition that i live with not a disability because i am not recognized as as an individual lacking ability the hardest thing about abilities is they can't be measured precisely by statistics and it's difficult to really pinpoint one's actual skill level but one truth about the word disability is it does not always mean inability the perplexing thing about having a so-called disability is that you can be so capable in a lot of areas but challenging others and at the same time you know still be able to function efficiently which all varies based on severity here i am chloe writing down your words again as you know that i do whenever we tend to get together um so a couple things i love um you know differentiating the ability between disability and inability and this idea of intellectual um invariance or intellectual variance um that you talk about again just a very unique and sophisticated way of describing your experiences around having autism so in your video that you created you um had a slide in the end that said autism is my super power um will you let us uh tell us what you mean by this yes um absolutely so autism as a superpower means using your abilities that make you high functionally high functioning or exceptionally gifted to rise above what others believe is your limit to succeed up to the mainstream and to prove the bias is wrong of able-minded people thank you so much chloe for sharing all this um i still have she's got the look in my head right now um awesome awesome choice um and you've talked a lot about um kind of these different views of autism and overcoming and superpower um so what were some of your experiences over the course of your education and how have you navigated uh the system so my upbringing in the school system had to do with the education system not recognizing my potential and having to navigate social adversity looking back on it now um the ones who were disabled were the doctors and the school staff because they had the inability to see my ability several of the schools i attended did not want to deal with my unusual behaviors and we didn't find out i had autism until i was 13 and got the official diagnosis it wasn't until high school that i really became aware of being behind the front lines of academia so during high school i was denied academ academia after my sophomore year because the school officials stated that i cannot be mainstreamed anymore i was given a restrictive environment placement in a special education class with severely handicapped students and lower level curriculum because i was mislabeled as having an intellectual deficit some of the notes in my iep report said word for word chloe's disability of autism impacts her ability to access general education and chloe's academic skills limit her progress in academic related coursework my teachers indicated that i had a great amount of difficulty with tasks that require critical thinking skills i was treated as one of as one who was not capable of succeeding academically because they just could not look past my condition of autism this led me to being under challenged during my junior and senior year and they never really worked to get me fully transitioned back into mainstream the only classes i was the world was allowed to take outside of special ed were art and pe however some of the positive aspects about being an art pe were i had good friends i got along better with the teachers and the ones in the special ed class and i always seemed happy in those classes my nickname in the in pe class by my friends was cheetah girl because i was a speedy walker and runner and one of the mainstream teachers even gave me a yearbook free of charge which was very nice well after 12th grade i was transferred to an adult transition class where they had planned to keep me there till i was 22 years old i wasn't being educated at all during this time and had eventually become tired of being under someone's supervision all the time and staff trying to normalize me when i expressed a desire to pursue higher education they challenged my decision i finally persuaded them to let me attend a semester of college when i went up to las positas college to meet with an advisor the advisor wrote a letter for me to present at my final iep meeting stating that they can see that i'm focusing on improving my basic skills and development so in my first semester of community college i worked hard and i got an a at my final iep meeting i brought this as evidence to show i was capable after some firm persuasion i left the transition class against the advice of the school staff and in later years passed the ged exam to get into university the biggest victory in all this was i was able to thrive academically and keep up with the demands in higher education without the benefit of completing my high school education which meant that my lack of high school education did not determine my level of succeeding in college so attending college was a breakthrough from being academically disadvantaged and i have been able to maintain a gpa above 3.0 the entire time college became the opportunity to use education as a practice of freedom and a search for liberation some of my best collegial experiences were studying abroad in argentina interning in thailand doing guest lecturing and being an honors student in the national honor society in psychology where i had won 13 awards following graduation one of which i was chosen as stu as student of the year a lot of the professors i i had perceived me as someone who was intelligent with a lot of potential based on my cohesive writing articulation optimism and diligence and every time i struggled in a hard class or felt overworked during finals week i got encouragement from my peers or the instructors saying you got this and of course i had many good friends and mentors that helped me find opportunities doing my minor in education helped me gain a better understanding of my own k-12 experiences and the education system itself and i come to real life to realize that the world does not have a perfect education system that's that is set up for everyone to succeed and acknowledge all the successful minority groups but one of the most important things to know about autism is it is a prospective diverse group in education that has a different way of navigating the system and bringing forth exceptionalities that can be useful and resourceful for learning so overall everyone who has a so-called disability that falls within the high functioning group does not belong in special education because i wasn't learning everything that i needed to learn and yet i still managed to endure the expectations and challenges of higher education and the real world i think educators view on students has an impact on allowing them to find their potential and this relates back to that old saying don't judge a book by its cover i think educators really need to understand that you can't judge a so-called disability by its differences well you left us with a very powerful message there you know the difference between differences and deficits uh is something that needs to be at the forefront of every educator's mind i think so thank you so much for sharing your story and um we will now move on to our next panelist so i will invite chloe to turn off her video and erica if you want to turn yours on while i introduce you erica minio is a proudly autistic disability rights advocate a pianist and violinist and pre-veterinary student in her fourth year at uc davis she is also the co-founder and vice president of the autism and neurodiversity community at uc davis and we of course will start by watching a video that erica has provided for us and then we will come back for some questions and answers [Music] so [Music] i'm erica minio my pronouns are she her and hers i'm a biological sciences major and music minor going into my fourth year at uc davis i'm an autistic advocate musician and pre-veterinary student and one of my favorite colors is purple i've been very passionate about animals especially cats and horses ever since i was young this is a picture of my cat cali the calico cat she's a rescue from the streets of sacramento and one of the sweetest and most opinionated cats i've ever met and i absolutely love horses i'm so fascinated with their incredible strength and endurance as well as their sensitivity and fragility i've always wanted to be a veterinarian and my dream is to someday attend the uc davis school of veterinary medicine currently i'm a member of full team we help take care of the baby equines and the occasional alpaca that come through the vet school's large animal neonatal icu i'm also an undergraduate pharmacy officer with the knights landing one health veterinary clinic a student-run clinic providing veterinary services to the rural community of knights landing while i'm hoping to attend vet school along the companion animal equine track i'm not exactly sure where a veterinary career would take me i have a keen interest in specializing and i've recently had an eye towards radiology the work environment seems quite sensory friendly and i think i like the type of social interaction that work entails another major passion of mine is music i've been playing the piano ever since i was seven and the violin since i was nine i was honored to have the opportunity to perform with the uc davis symphony orchestra last year the footage at the beginning and end of this video is actually from the encore from that concert but music is so much more than simply playing the notes it's the oxygen for my soul and while being autistic does have its challenges as an invisible disability it's in music where you can see its strengths in addition to some of these challenges my sound sensitivity lets me notice a little details of a piece but it also means i have to wear earplugs whenever i play it's a bittersweet irony that i can never directly hear the art i'm creating because it physically pains me so much but this intersection of autism and musical perception allows me to experience music as a living breathing entity that busts me nurtured and interpreted thoughtfully when i play or hear a piece i see and feel sparks waves and ripples of color even images besides the notes themselves my other passions include running nature photography reading classic literature especially shakespeare writing poetry and more recently gardening in women's soccer and ever since i was diagnosed as autistic the day after my 18th birthday which i consider the best birthday present i've ever had i've gotten a keen interest in disability studies and autism advocacy i'm the co-founder and vice president of the autism and neurodiversity community at uc davis a peer support group for autistic students and community members my advocacy strives for greater acceptance of autism and neurodiversity as well as highlight the crucial intersection between autism and mental health i've been a panelist with the uc davis mental health initiative in last year's mind institute neurodiversity summit i also participated in the uc davis student disability center faces project illustrating that disabled people are diverse and that we deserve a genuinely accessible inclusive environment in higher education and also society as a whole going forward i hope to keep advocating for acceptance of autism and neurodiversity in society including in music the veterinary field and wherever else this work takes me it's an honor to speak at the mind summer institute and i'm excited to be a part of it [Music] incredible uh thank you so much for sharing your story and art with us and i just want to take a moment here to say we've heard about sports video games data fashion animals movies music there's such a beautiful diversity on this panel and i just had to take a moment to appreciate that but erica you talked a lot about you know this bittersweet irony of never fully being able to hear the music and the art that you produce i'm interested can you tell us about your sensory profile and how it dictates how you navigate your day maybe describe the tools or strategies you use to self-regulate and how have your sensory needs influence or shaped your educational experiences sure well i have to essentially plan my entire day around my sensory profile i'm extremely sensitive to visual and auditory input such as brighter flashing lights as well as any kind of sound especially loud harsh noises and nearly imperceptible buzzing or high-pitched sounds i dislike sudden touch especially from strangers but i enjoy deep pressure such as a firm hug from a trusted person i'm also sensitive to most strong smells but oddly enough i love the smell of horses and i'm pretty selective about what i eat i feel that a typical school day is much more exhausting for me than the average student whether in person or virtual ironically the academic rigor is not the most difficult aspect of the day it's pacing myself through all the sensory stimuli that accumulate whether i walk to classes or interact with others i'm thankful to have official accommodations that account for my sensory sensitivities such as taking exams in a separate low distraction environment outside of that i have a myriad of strategies to minimize sensory input one of the most important ones has been establishing a consistent routine or schedule and planning ahead before the pandemic when classes were still in person preparing for the upcoming school day was a serious endeavor my earplugs were my trusty defenders against loud harsh noises such as those from crowded lecture halls and construction sites they also blocked out less loud but equally distracting sounds like air conditioner fans and buzzing fluorescent lights in classrooms i chose my clothes based on sensory comfort not fashion even on warm days i'd always wear a scarf with which to self-soothe i'd make sure to always bring my lunch from home not only because i'm a pretty selective eater but also to avoid having to go to a sensory unfriendly location like the memorial union or the silo to purchase food crowds are absolutely terrifying for me and i'd actually avoid both locations at all costs especially at peak hours i'd also map out the quietest least disruptive routes to classes ahead of time and make sure to walk each route before the upcoming quarter i also designated safe places on campus as refuges in case of if things got too overwhelming such as the arboretum the horse barn and the music building but now with the pandemic much of the sensory stimuli i would have received on canvas is now gone however i found my threshold for sensory input especially noise has also lowered i still need to take breaks and pace myself even a virtual classroom environment like zoom is exceptionally stressful and anxiety provoking it's still a routine i haven't gotten used to i also have several more strategies and tools to self-regulate which are at home playing music is definitely one of them my 16-pound weighted blanket without which i cannot get to sleep is excellent for giving deep pressure to calm down i have a diverse collection of stuffed animals and their soft fabric and weighted beads are excellent for stimming or repetitive self-soothing i also love running and i've come to think that might be another stim due to its repetitive percussive movement and being around and taking care of my cat cali is another source of comfort she just always seems to know when i'm stressed and she'll seek me out and jump in my lap so that i can pet her ultimately recognizing and working with my sensory needs instead of fighting against them has allowed me to become more self-aware and more in tune with myself in addition i've learned how to not only use available resources to accommodate myself but also to advocate for myself and for others like me i feel that i've learned so much about um sensory sensitivities and really the importance as an educator of understanding sensory sensitivities that individuals with autism such as yourself have so thank you so much and also thank you for sharing um specific self-regulatory strategies so um i wanted to ask what do you think is unique about the intersection between autism and your gender identity and then further how have your experience has been shaped by and impacted your mental health my existence directly defies that stereotype that only cisgender boys and men can be autistic and being openly autistic is empowering by showing other autistic women and girls that people like them are out there and able to live meaningful lives but navigating this intersection of disability and gender has not only proven a toll on my mental health but also put on full display the rampant discrimination stigma and misconceptions that society still perpetuates and believes much of this i think is due to the pervasive medical language and the pathology model used to describe autism and other neurodivergent neurotypes as well as a set of gender expectations for women and girls both cisgender and transgender in society i'll delineate this intersection in two areas one in the medical field and the other in education in the medical field i've encountered many professionals who still tell me i can't possibly be autistic because of my gender this isn't just frustrating it's made it much harder to access the supports i need and to even be believed as a patient not to mention that telling an already vulnerable and marginalized population that they're disordered and that the way their mind works is fundamentally wrong is simply setting them up for poor mental health outcomes i have generalized anxiety in addition to being autistic and it took two and a half years and eight medical professionals before i was able to access the mental health support i needed to find doctors and psychologists willing to work with the autism and anxiety not against it i'm thankful to now have a robust care and support system especially in this pandemic though i'm well aware this isn't true for many other autistic people i recognize my privilege as cisgender white passing and neurotypical passing in my ability to access resources and services while navigating the educational system i face considerable pressure to mask or camouflage my autistic traits even at university i must also contend with societal expectations of women to be seen as competent we are always expected to be calm emotionally stable and put together all the time ultimately this can be harmful because i'm forced to mask my autistic traits in order to just be seen as competent and even just to be taken seriously i'm constantly analyzing and second guessing every social interaction i have always assuming the worst possible scenario and the anxiety from this constant masking just exacerbates all the stress brought on by sensory input and the social interactions while masking definitely comes at a great cost to my mental health it also illustrates why functioning labels like mild or severe or high or low functioning ultimately fail at different times in different contexts and depending on whether or not i'm asking i have been perceived and treated as both a high and low functioning autistic person yes i can attend university speak using my vocal cords and use a college level vocabulary to articulate my thoughts but i'm also capable of serious self-injury have severe anxiety and experience sensory processing issues that can be downright debilitating functioning labels fail to account for the nuance either my challenges of being autistic are dismissed because i'm too high functioning for supports or my humanity is denied by being labeled low functioning and incompetent i therefore face an impossible conundrum society tells me to be myself and not be afraid about expressing myself but in reality i am rarely in spaces where it's safe and acceptable for me to truly be myself so do i choose to be authentic and salvage my mental health by not camouflaging myself under a neurotypical mask and therefore risk being labeled as incompetent and seen with pity as the poor little disabled one at best and possibly risk injury or death at worst or do i choose to sacrifice my mental health by masking my autistic traits to be taken seriously as a competent rational person and yet be a traitor a charlatan to myself but then at least i'm safe we autistic people need community ideally in space is formed by autistic people and led by autistic people to truly be our full authentic selves we need actually autistic role models and peer support to facilitate solidarity when society insists on labeling us disordered and broken we want people to understand that we can celebrate neurodiversity while also acknowledging the challenges of being disabled especially when considering that society has never been kind to people like us disability can be both messy and dignified a source of empowerment and major challenges but ultimately disability is and always has been a core part of human existence we want to be seen as human that our lives intrinsically have worth and believe me we will never stop fighting for these fundamental human rights and towards this ultimate goal thank you erica i have chills wow and i don't even have lords um wow thank you thank you so much um thank you so much absolutely your message is very important um as is everybody else's leaving me with chills um so before i get the chance to introduce our last uh panelists i just want to remind everybody that um in the end um after our last candlestick we're going to do a general question and answer session um and this will give a panelist to answer questions from you all so if you have questions and comments please use the question and answer feature on zoom and as they come in we will be gathering them to ask our panelists after um after this last session um so next i am going to introduce our final panelists kristin godfrey kristen is an autistic advocate and lend an alumni she is currently pursuing a master's degree in child development and psychology she is happily married and has two autistic boys ages 8 and 11 years in her spare time kristen enjoys riding horses swimming and spending time with her dogs and cats she also serves as an officer of the diverse ability employee resource group at uc health um uc davis health so um as we did with everybody else before we have a chance to talk with um kristen we are going to watch a brief video that she put together for us hi i'm kristen i'm excited and honored to be speaking at the summer institute being an autistic person means a lot to me as a mother speaker researcher and a person who wants to see more girls and women come to a better understanding of who they are i was diagnosed with asperger's in my mid-20s it consisted of being handed a pamphlet which i promptly discarded it wasn't until after my kids were born that i learned what autism really is i learned to be ready to fight for everything as a parent accommodations iep social situations bullies and school policies i tried to get a diagnosis recently because i didn't have any paperwork for my original assessment and i wasn't able to get a diagnosis of autism because i don't show any signs of having a disorder instead i was given a diagnosis of b.a.p which is broader autism phenotype i think this this is due in part to the masking camouflaging that we as women have to employ to adapt to our surroundings such as work social situations school life home life all of these things that we have to learn how to fit into i definitely would have qualified as a child for a diagnosis i was very immature for my age i have an intense interest in horses singing and music i played with my little pony dolls until i was a teenager and i still have my little ponies i love to brush their hair and style it just as much as i do my own horses i'm a perfectionist i stim with horseback riding crochet reading hand flapping only when no one's around rubbing my hands popping my joints spinning around in the pool while i'm swimming when i was a kid i would roll downhills over and over because of the proprioceptive input and the sensory input that i would get i have an excellent vocabulary my reading and writing skills are above normal which is why i work in communications now i speak too loud or too soft or in an odd tone i don't have many friends and i don't know how to act around new people i don't like parties or social gatherings i like my quiet space at home and need to recover there after a day of work or being out in public i'm bossy without realizing it i don't like to make eye contact but i've learned how to do it i've always had difficulty fitting in i get anxious when things change too quickly or i'm not given enough time to process changes i suffer from anxiety i don't like public speaking but enforce myself through it because it helps others to learn from my experiences and i get a little bit better each time i do it i think i was either not told i was autistic or missed being diagnosed because of my gender it was and still is easier to attribute my symptoms to mental health issues or other disabilities advice i have for other parents caregivers or educators is to tell your kids about autism what it is what it means and how it doesn't limit who or what you are never let anyone tell you you can't do something even if it takes you two five ten times longer it took me 20 years to get my bachelor's degree i'm currently working on my master's degree in psychology i'm a lend i'm a lens alumni at the uc davis mind institute i have a two-year writing degree from ucla i currently work at uc davis health in it i have two wonderful kids ages 8 and 11 and i've been married for over 21 years i have two horses three cats three dogs and a ton of chickens all you need to do is believe in yourself you never know what will happen unless you try thank you kristen i'm feeling fairly repetitive because again the words that come to mind are wow thank you so much for sharing your story um and your experiences um with having autism so we've heard some great research talks and we've heard others talk about camouflaging and a little bit in your video as well um from your experience why do you feel that autism is missed or overlooked in girls and women that's a great question thanks nicole um i feel like autism is very much a hidden condition because of masking because of camouflaging and the tendency to mimic others which is a form of camouflaging pretending to be normal and fitting in without really having a sense of true self or really understanding who you are internally because of the masking and camouflaging stereotyped assumptions i think are contributing to um girls and women not being diagnosed um like you can't be autistic if you're not good at math you can't be autistic if you appear social and of course the dreaded you can't be autistic because you're too high functioning also co-occurring symptoms like anxiety depression and eating disorders are leading to a lot of misdiagnosis and mislabeling they're not really looking at the root cause they're going to other diagnosis before coming to autism and it's usually finally after a long list of mixed diagnoses that girls and women finally arrive at a diagnosis of autism and then it can also change during certain parts of your life depending how many autistic symptoms you're actually showing over the course of a lifespan um issues getting a diagnosis i had a diagnosis when i was younger wasn't able to get a diagnosis later doesn't really matter to me one way or another diagnostic criteria is geared towards the male diagnosis the severity of symptoms in girls and women is less than men because of our desire to fit into the mold and all of the things that were taught as women growing up really play i think a large factor into misdiagnoses and under diagnosis in women and girls we don't tend to show as many um restrictive and repetitive behaviors and we have less severe special interests such as horses music fashion as you've seen across our panel one of the reasons we need to change this is so that girls can get earlier services earlier interventions to have better outcomes a better better understanding of themselves instead of ending up with borderline personality disorder or you know disassociative true self people you know girls aren't really learning who they are growing up they're learning who to be or how to act growing up thank you kristen really important information um so can you share uh your experience a bit on what it looks like in everyday life for girls and women to have autism honestly it's very challenging um like i mentioned it's hard to have a sense of self between the masking and the camouflaging um not understanding how to maintain social relationships making and keeping friends knowing who true friends are and people who are just you know out to use you for whatever attending parties or engaging with large groups feeling like you're an outsider looking in and watching other people socialize flawlessly um a lot of misunderstandings of you know oh i see so and so doing this and you know you get excluded and it just doesn't make sense it doesn't click why or how um uh in work life um it makes interpersonal relationships difficult um although i feel like it's easier to understand work relationships than undefined relationships because there's rules of con conduct there's defined rules in the workplace noises and sensory issues and lighting really bother me in the workplace having to mask all the time since i'm older i've been doing this for a while so it's easier for me than it would be for someone who's just starting out with their career it's also easier for me to adapt now because i know i'm autistic asking for accommodations and demanding them when necessary wearing um sensory friendly clothing or getting an accommodation if your hr department isn't comfortable with what you're wearing to work um in home life um i've been over critical of myself not fully understanding who i was changing myself to fit in different situations understanding social nuances to fit different situations can be very challenging and difficult i also have my own service dog that i trained specifically for my own needs and tas trained her to do um what i need to help me from um you know autism and anxiety uh symptoms and then i also have a little kitten who just loves to snuggle and and gives kisses then my two horses summer and firefly are really great for writing and proprioceptive input so you've started to tell us a lot about the fur family members in your home life tell us more about your family and how do you manage the challenges and responsibilities of parenting while being autistic i know we have other panelists who say at some point in their life they were told they could never have a family yeah that's crazy to hear um i mean it's difficult to handle my sensory needs with my children especially when one of them his stim is to make constant noise like he loves to make noises if you've ever heard the howler monkeys at the sacramento zoo he can do a perfect rendition of that and he will do it all day long so you know kind of teaching him um to manage um some of his noises so that they don't bother other autistic people in the household has been challenging um dealing with other parents just learning how to be a parent not being accepted by other parents children not being accepted by others the force all of the forced socialization that comes along with being a parent learning how to be yourself as a parent and not copying others or mimicking their strategies or styles dealing with bullies teaching your children to make real friends and what friends are it helps to be self self compassionate and take lots of breaks and have your own sensory time not compare yourself to others do what makes you and your kids happy and ignore outside opinions all the haters trying to tell you what not to do and then it's okay to get help and medication you are autistic and you have children who are autistic what insights does being autistic yourself give you into parenting your autistic children yeah i think it's important for kids to know who they are and where they come from they need to know about their diagnosis i tell my kids that there are all different types of autism and that everybody's a little bit different we don't really go into any type of functioning levels or severity um we have common special interests which is great my older son loves to ride horses so it's something we can do together i think it helps give a greater understanding and compassion and um i'm okay you know with all the delays and challenges that the kids face i understand it's gonna take them longer to do things than it would a typical absolutely and um so you you're in a unique position where you have these different perspectives you know what society is telling parents and you know what you're experiencing as an autistic person you know what you went through in your life so what advice do you have for other parents and teachers and caregivers so for parents i would say definitely trust your gut get involved with research and clinical studies if you can fight for your child and their rights um take parent training classes learn about autism um listen to other autistic people is probably the best thing to do and for teachers just you know be patient and be calm um get supports if you need them and consider having an autism presentation at your school preferably done by um autistic people would be my recommendations so it's like we've come full circle here thank you so much kristen um who kind of ended where we started with listening to the autistic perspective in any domain that we can to really work together on both sides of this in a shared understanding with a shared goal of just better outcomes for autistic people so that is our final panelist and i would now invite all of our panelists to turn their videos back on and i believe questions have been coming in this entire time while we all have been presenting so i think i can open it up for some of those questions now thank you all four of our panelists so um we have gotten a good amount of questions one question that kind of goes to all panelists is about starting off um so for anybody that wants to share um that's you know how um how did you feel comfortable beginning to kind of start off when you were just learning about yourselves in regards to being newly diagnosed yeah um for me it was it was difficult at first because i was diagnosed while i was in community college and i didn't know of any like support groups or peer groups where i could meet other autistic people so i felt kind of alone and i think that's why i didn't really talk about my autism very much while i was in community college but when i transferred to uc davis i was able to connect with erica one of our other panelists is a good friend of mine she mentioned she founded the autism and neurodiversity community and um i joined that club to meet other autistic people and um being able to connect with other people like me gave me confidence as well as appreciating like um my my colleagues at my lab and my teachers that seemed to really appreciate me um and that gave me the confidence to to start talking about my autism without worrying too much about being judged okay thank you so much lisa so another question that came in um is about or to caregivers and parents um so what do you think was the single most helpful thing that your parents or your caregivers did when you were going through your journeys that you described while growing up i was just going to say from a perspective of a parent not as a child with some of the things that you know my kids really like that i do is um you know i listen to them you know what they want um you know we talk about decisions before they're made i think that that really helps you know them to process things and feel involved i mean even if it's just as simple as what color are we going to paint your room like let's really talk this through and then in terms of more complicated decisions um you know what school do you want to go to my older son was at three or four different schools we homeschooled for a while and now he's at a waldorf school that he just really loves and he fits in there really well and we continuously ask him you know is this the right fit do you like going to school you know just constant discussions with the kids about um if they're happy you know trying to keep them happy and trying to keep them um you know tuned in to the world around them i completely agree with kristen about um parents listening to autistic children i feel from from the child's perspective i definitely feel that my my parents were always really positive towards me and things that i wanted to pursue and careers i was interested in like for a while i wanted to be a geologist and then i wanted to be an orthodontist and they were happy with whatever i was interested in a question that again is to everybody around pets so in in everybody's videos or in conversation folks have talked about having pets so the question says um please mention how different types of pets have been of comfort and assistance to you so we heard about horses and dogs any other types of pets and how have they become or our assistance for you i can speak to my cat callie for sure um i've always wanted to have cats ever since i was little but usually after the places we were at wouldn't allow cats i was actually also allergic to cats for a while and it wasn't until i went through about three years of immunotherapy or allergy shots that that was taken care of it also made me allergic to dogs and horses too i can't believe it it was a vet's worst nightmare i'm like i can't treat my patients but um anyway when we moved up to davis we were able to get a place that allows cats and we were able to adopt cali and she's just been absolutely wonderful she's not like an official emotional support animal or anything but she definitely can pick up on my emotions and sometimes when i'm upset especially she'll come up to me and just give me this innocent little look and a meow kind of remind me that there's someone i need to take care of here it kind of is like a grounding mechanism i guess i mean i don't want to make her unnecessarily uncomfortable so i never force the interaction but it kind of helps me to calm down a little bit breathe relax and then she'll come up into my lap and it's almost like having a warm alive squirming lap pad it really is and i think a lot of people in the club have spoken to this that cats and autistic people are quite alike in a lot of different areas so watching how cali behaves and how i can best change the environment so that she's most comfortable has also been another thing that's helped me become more in tune with myself and my own sensory sensitivities because i might not know that the ceiling fan is annoying but if it's annoying her then all of a sudden everybody wins so that's also another plus as well i feel like this is one i can probably speak to as well having so many animals my dog actually in fact is always with me she's right here on the floor if i leave her in my bedroom um she gets so upset she'll scratch at the door and she doesn't she's not really a barker but she does not like to be left behind she's basically always at my side um i have a work accommodation which is great to bring her into the office with me you know pre pandemic she would come into the office with me and she was not only my service dog but a lot of other people would love to come by and pet her and you know enjoy her as well she's a shetland sheepdog so she's a very emotionally intelligent breed you know she is able to pick up on my emotions and you know kind of my cues without me even having to say anything to her and then my newest little addition is my kitten who just will sit on top of my chest and purpur her and just you know it's like all about me like no put your phone down like here i'm gonna put my paws like right in your face like you're going to pay attention to me you're going to stop everything you're doing and you're going to just it's all about me and love and snuggles so he's just he's adorable um and then um my horses are great because you know they're big huge animals that you can brush and you can you know braid their mane and braid their tails then you can also ride them um to get that proprioceptive input which is so important up and down motion of being on a horse is very relaxing just going for like you know a 30 minute trail ride i feel a lot more relaxed after that um and as far as you know my children we each have an animal in the house that is like our own animal i have two i'm the one that has a cat and a dog and the horses but my son has his own dog that just is his shadow i mean the dog is just loves him and follows him around and you know is his best friend and then my other son the younger one has a cat who just you know if he's upset that cat is on top of him you know she's almost as big as him which is really funny because she's a huge rag doll so she just like covers his entire like chest and laugh and you know kind of acts as um you know a weighted blanket almost a purring warm fuzzy weighted blanket somebody had asked about your the tricks that you um have taught your dog are there any specific tricks that you want to share that you've taught any of your dogs so yeah i think what they're asking is probably tasks because tricks and tasks are different so service dogs are um task trained i don't know if anybody's seen the disney special about the um seeing eye the blind the dogs for um the blind people who you know they learn how to do lots of things that help people who can't see do certain tasks so if i get really stressed out um or if i have a lot of anxiety my dog will actually come up and put her body on me she'll either put her body on my lap or she'll put her paws up on me and she won't leave until i've acknowledged her um and i've i've you know taken a second to be like oh yeah like there there's something going on here you know i'm feeling emotionally disregulated um or you know i i needed some support in in some way that i i wasn't realizing or picking up on myself it's an important distinction between tricks like sit stay calm like she can do all of that stuff no problem all my dogs can but it's the actual task training that that service dogs learn and i was able in conjunction with some akc um trainers to her these specific tasks that she was already doing on her own we got her when she was about a year and a half and she was about two freeish once we started task training her and she just took off i mean she's just a fabulous service dog i too can speak to the power of animals my dog is extremely regulating for me if i get glued into some task i need movement and input like every two hours that dog is like walk me walk me walk me and i'd also relate it to um like lisa's paper on data there are things that animals do that are so concrete and predictable and i feel like i connect to them and droids in movies on almost a deeper level than humans often chloe there's another one that came in that that is not necessarily specific to you but maybe we can jump in with this one so you um compared to kind of everybody else were diagnosed a bit younger um what advice do you have about to parents or educators about telling you about your diagnosis well well i think the best advice is that you know your diagnosis your diagnosis is not who you are i think that's the best advice i can give because your diagnosis is you know the testing results and the doctors you know interpretation of what they found based on you know examining you so i think um they should they should be careful on how they you know develop a prognosis for somebody who's autistic because for all kids we don't know what the future holds and you know development is so different for everyone like with psychologists they have they have these um these things about how kids are supposed to be developing at a certain age and i think you know that really differs for autistic people because development you know it comes at different at different paces and i think when we talk about about the diagnosis with kids i think we need to tell them you know that they'll never be able to not tell them that they're never going to be able to do this you're going to be able to do that because with autism anything is possible and you know people with autism can change and develop over time just as anyone else so i think you know there's been a lot of you know a lot of diagnosis where doctors have been wrong and i think parents and educators really need to understand that thank you so much chloe does anybody else want to chime in here about what advice you would give parents or professionals just about giving that diagnosis i think i completely flew under the radar as a kid and i remember in preschool um when my one of my preschool teachers actually wrote a letter to a psychologist and i'm just talking about some of my sensory sensitivities my inability to sit still my anxiety and when i read that letter now i just think this thing is screaming autism at me but since i was a girl that didn't really work um i think i have a slightly different opinion than chloe regarding diagnosis because i think even when we consider the wording about disability it's saying we're disabled not unabled i think disability speaks more to the societal um either stereotypes or expectations that are put on us or the burden that's unfairly put on us from having to function in a society that just does not that just wasn't built for us and i think that's something that's so important that preschool environment was not built for an autistic girl who was sensitive to noise i was not really enjoying myself there and the things that helped were making consistent schedules scheduling things out making sure everything is consistent but if we just had autism as a diagnosis i think that would have been really validating i know for me when i was diagnosed the day after my 18th birthday which by the way aged me out of all pediatric services unfortunately um that was just it was like validation it really was that yes i have a disability but you know you can be proud of that it's not the word itself does not have to be bad but i think words like disorder pathology deficits i don't know trying to tell that to people i don't know how about words like development challenges differences i think those are a lot more neutral terms of course i'm not asking people to water down disability i don't like euphemisms like differently abled or special needs ah that one my least favorite um because we're not really special we're just different and the accommodations that we're asking for are i guess i mean they're law first of all now they've been law for 30 years but they're also um necessary they're necessary if we want to create a truly accessible and inclusive society those are really powerful words erica and i'm totally with you on that um a question came in for lisa and anyone can weigh into but we think perhaps lisa will like this one what do you wish your family had done to help you deal with autism in your childhood or adolescence knowing that you weren't diagnosed till later but are there things you would suggest now this is kind of a heavy question for me um i'm actually happy with with how how the process played out for me um my my mom was a speech pathologist and she worked with autistic kids a lot and like she even went to continuing education seminars about autism so i think she probably knew that i was autistic because she knew so much about it and how would she not know that her daughter is autistic um but i wasn't diagnosed until after she passed away so i never had sorry i never had an opportunity to ask her if she knew but um i think she i think she purposely did not decide or decided not to seek diagnosis for me because um i remember once her telling me that if a child has a mild stutter sometimes it's best to not do anything about it because the child might grow out of it but if they're treated for it it might make them self-conscious and make the stutter worse and she seemed really poignant when she was telling me this story and i didn't realize why until later i think she was thinking about me and her choice to not seek diagnosis for me because i think she thought that intervention wouldn't do much for me so i and i think i would have even myself i would have counted myself out of doing so many things um if i had known that i was autistic but when i was diagnosed as an adult it was positive for me because i had like more strength to deal with it thank you so much for sharing and that's really difficult um and i often have a kind of internal struggle with myself of what would my life be like if i had been labeled autistic because i often think that some of the very things that i used to regulate and to be able to engage in school were the things that people would have set goals to change about me like being able to sit in the cafeteria at least three days a week for 20 minutes and initiate two age-appropriate conversations you know those things can so easily become the goal and that's what really builds that mask up over time i think so um we are exactly at time i want to thank all of our panelists again for fully sharing their stories we know there are so many more questions than have been answered but the people behind the scenes are actually putting them all into a word document i believe and um we will be able to follow up in some way i think i could be lying there but i think so um so i'm going to hand it over to nicole now and just one more time thank you panelists so much thank you and i want to echo that um again thank you all so much your stories are so powerful and i know it left everybody with a lot of insight [Music]

Channel: UC Davis MIND Institute

Views: 88,070

Keywords: UC Davis MIND Institute, UC Davis Health System, Uc Davis Health, Autism, Women on the Spectrum, ADHD, Nicole Sparapani, Jacquelyn Fede, Kristen Godfrey, Lisa Malins, Erica Mineo, Chloe Rankin, Life on the Spectrum

Id: o6NFgyOVG-4

Length: 100min 50sec (6050 seconds)

Published: Tue Aug 11 2020