Transition to Adulthood – Autistic Burnout and the Costs of Coping and Passing

all right welcome everybody i'm david eaton i'm one of the nurse practitioners at seattle children's autism center i've helped out jim mancini who's the usual host of the autism 200 lectures uh occasionally when he's out he's out on vacation right now and so i'm filling in for him tonight um a few kind of uh housekeeping kind of things before we get started we are streaming live on facebook live and then that'll kind of that video will stay on facebook it kind of immediately gets kind of uh you can just review it later at a later date so if any of you are either on facebook or here in person or asking questions just kind of keep that in mind you know no personal information at least that you don't want out there so kind of de-identifying questions and not too much specifics that you would feel you know uncomfortable with having in any sort of social media setting so keep that in mind if you're asking questions but we don't want that to discourage questions so definitely feel free to ask away um and um let's see oh uh autism we have our autism 200 tonight somebody earlier was just asking a minute ago what is autism 200 and the idea is that you know from a college perspective your introduction classes are like autism or 100 level courses and then kind of the second level of kind of you know after your first year of introduction to different college courses your second year of college courses are like 200 level courses so these autism 200 series lectures are different kind of sub topics in autism it's not a general autism discussion tonight and each month when we have our autism 200 it's not a general autism discussion it's a real specific topic that we try and get into a lot more detail about so these summertime lectures this month and next month in august the last several years in the summer we've focused on transitioning into the adult years and so adult-related topics has been our focus in these summer lectures so without further ado i'll read up kind of a little introduction information tonight we have dora raymaker she's a phd researcher at the university at portland state university almost got it wrong she is researchers at the regional research institute and is the co-director of the academic autism spectrum partnership in research and education so the acronym for that is aspire with two a's at the begin at the beginning i think you talk about that in the slides you'll see more information about aspire as we go she's also the associate editor of the journal of autism and adulthood an organization for autism research scientific council and a member let's see oh she's a member of that council and she is an autistic person herself dr raymaker's research interests include community engaged practice systems thinking measurement adaptation and dynamics at intersection of science at the intersection of science at the intersection of science society and public policy there we go there's the intersection in inner application dr raymaker's conducts interventions and services research and collaboration with disability and mental health communities and the goal of that is to improve health well-being employment huge topic there self-determination and reduce stigma in the autism community in the remaining three in the rema tonight dr remaker will oh sorry uh in the her remaining time that she has dr raymaker writes fiction uh with neurodivergent heroes including science fiction mystery novel called uh hoshi and the red city circuit is that on your website if people yeah go check out her website if you're going to find out more about that part tonight we're going to be talking about autistic burnout the title is my physical body and mind started shutting down and without further ado to introduce that topic to you all and talk about it we all have dr raymaker come on up what's up so thank you so much for having me um as as i stated i'm faculty at portland state university's regional research institute for human services in the school of social work and although i conduct research with clinical populations specifically with autistic mental health and developmental disability populations i'm a system science not a clinician just just so you you know i won't know the questions about those those clinical details although there are clinicians on my research team who are a part of this work i conduct social services intervention research so i look at ways that social service systems can change to better serve individuals and communities and all of my work is done in collaboration with people from the communities that are being affected by this work so sometimes like in the case of aspire which is responsible for the burnout research i'm going to talk to you about tonight i'm also a member of the community too not always but i am i am in this case so and as you can see from this baby picture i've i've kind of been a long time bit of a subversive civil rights human rights advocate and my my ongoing goal is always science for social change i think it is possible so i want to tell you a little more about aspire before i get into the burnout discussion because this research was really developed and conducted by aspire even though i'm here representing it so aspire is a research group that i co-founded with christina nicoleta she's a physician researcher and a parent um 13 years ago and she'd been following me on this autistic parents list she's she's the parent and i was just there kind of trying to help parents to better understand their children and she decided she wanted to meet me and being the really really wise person she is she realized that an invitation to unstructured social time was probably not going to work so well so she created this autism journal club to lure me into meeting with her and we read maybe about three research papers before issues became really overwhelming so it was autism research that was not useful or relevant to our lives uh faulty research designs because the researchers didn't understand enough about what it was like to be autistic research that stigmatized stereotyped or further marginalized autistic people and research that even caused harm so christina was at the time doing this community-based participatory research with the african-american and latina communities and she realized that one could kind of substitute african-american for autistic in these conversations and the issues in research would really be the same so we decided to stop complaining and do something about it so community-based participatory research which is the research that she was using in her violence and depression projects with these other communities was invented largely to address exactly these types of problems cbpr is an emancipatory approach to research and inquiry there are a lot of different and related ways of conducting community engaged research cbpr is just one of them that developed mostly in public health and it's very very well known and well accepted within the field of public health at this point cbpr takes an equitable approach to research so the idea is that community members serve as co-researchers with the academics in all phases of the work that includes deciding what to study how to study it developing the research materials and collecting data and all the way through to the interpretation and the dissemination of findings the lived experience and community knowledge of the non-academic partners is valued equally to academic expertise it's a different kind of knowledge but it is of equal value and autistic adult and other community members from aspire team were involved in all stages of the autistic burnout work i'm going to talk with you about today so this this is all of all of the team's research so 12 years later here we are aspire is a team of autistic people academics family members health care providers and disability service professionals some of us like myself are in overlapping roles we work in partnership with a number of academic and community organizations and we're always happy to collaborate with more and well 12 years and multiple nih funded projects we have a lot of learning behind us and i'm really incredibly proud of of what we've done so currently we have three main active areas of research and i'm going to talk to you today about the autistic burnout study which is exploratory research to understand and define autistic burnout and to begin working toward how to measure it but we're also working on autism and professional employment particularly we're looking more broadly than just information technology fields and we've completed an exploratory study to understand things that help people be successful in employment and have just received and very excited new funding to begin intervention development so we're this first little piece is to specifically target toward workplace culture change to make workplace cultures more accepting to autistic professionals um and then the area that we've been working on the longest this whole time is healthcare for autistic adults and the aspire healthcare toolkit for primary healthcare is available free online at autism and health.org and we've also started working on adapting some of that for use in emergency departments and hospitals and in the q a later i'm absolutely happy to talk about all of these studies and all of these topics they're all relevant to transitions and adulthood and i'm proud of them all so all right so onto the burnout study so now that all that background and framing is done first i'm going to cover what is autistic burnout and why does it need research and then briefly i'll explain the methods of the study and then i'll get into kind of the meat of what we've learned so far about autistic burnout from the study and the implications and recommendations for other autistic people families and clinicians based on what we know so far and then lastly there should be plenty of time for questions and discussion like i say i'm happy to both discuss the burnout work and any of aspire's other work so what is autistic burnout and why does it need research the phrase autistic burnout is used a lot in the autistic community that's the community of autistic and young adults and and has been used by us for many many years and it's applied to this feeling of utter exhaustion and loss of ability that may share some similarities with professional burnout only it's like applied to every area of daily life instead of just to your job and some people also refer to it or describe it as autistic regression although that term is a bit problematic particularly when you're talking about adults regardless of what it's called autistic adults report times in their lives including during childhood adolescence particularly around transition points where they experience exhaustion so great that they can no longer cope as before and lose skills or functions they previously had act or feel more autistic lose jobs can't maintain school can't maintain relationships um mental and physical health sometimes develop chronic health conditions permanent disability or become suicidal and so something is clearly happening here but what so there are a lot of unanswered questions about these experiences for example is there a clear definition of autistic burnout if so is it different from these other kinds of burnout like professional burnout is it different from depression and most importantly for doing something to stop it why does it happen and how can it be relieved or prevented so as i say autistic peer people have experienced it and have some sense for some of these answers so we've discussed our experiences pretty extensively on social media and in community spaces and shared thoughts and strategies for how to recognize it prevent it or cope with it we've talked about it as a source of distress as resulting in these poor life outcomes we often connect it to extreme stress or stressful life changes as well as to the stress of masking which is having to behave or pass as a non-autistic person or a non-disabled person in order to meet external expectations understanding and relieving or preventing autistic burnout is an exceptionally high priority for autistic adults browsing autistic burnout on twitter will give you a taste for uh for that urgency as well as some examples for the kinds of conversations that go on in the community about it but knowing one's own experience of autistic burnout and sharing strategies isn't necessarily enough to understand what to do about it either systematically or in response to an individual need so here's one person's tweet i told my therapist i think i'm having autistic burnout she agreed and that's as far as we got what helps help me i'm begging you please despite this urgency though the published research on autism and burnout is all on family teacher and caregiver burnout none is on the burnout of autistic people ourselves or on people with disabilities in general none of it is about uh and a lot of it is also known there's a lot known about professional burnout including in populations that also have high rates of masking and suicidality like physicians for physicians masking in their case they have to hide their feelings about the human suffering and trauma that they see daily and remain outwardly emotionally grounded and compassionate toward toward patients and families um is connected to increased burnout and that burnout is connected to increased physician suicide so this is you know stuff we know um and it's very important to know this when developing interventions to reduce burnout mental health distress and suicide for physicians but there's been no scientific exploration yet into whether similar mechanisms may be happening for autistic adults which have a huge rate of suicide despite some similar risk factors like the increased need for masking so understanding where autistic burnout fits within this existing burnout literature could be really important in addressing it so more concretely we don't have enough information yet to answer that tweeter's question to their therapist and to the world of what helps we have to start somewhere so this is where my team started so this is the aspire autistic burnout study so the aims of our research were just to first characterize autistic burnout what is it what does it look like and to qualitatively understand people's experience of it and their ideas for strategies to prevent it or to recover from it and then using that information and the existing literature on burnout were applicable to develop and begin validating a measure of autistic burnout we see these as our first steps um because before we do any more applied intervention or services work we need to know if anything that we're doing to try to fix the problem has actually worked so we need a way to kind of figure out what to do and detect if we've done it so for that first aim to just try and define and understand the characteristics of autistic burnout we took three sources of data this is my little pointer that i know facebook can't see the three sources of data describing people's lived experiences with autistic burnout and we analyzed them qualitatively we then are using what we learned from that analysis to create and pilot test this measure and we're going to test it with about 50 autistic adults and then we'll hopefully be able to use the findings from all parts of the study both to begin disseminating information and recommendations like through this talk here and also to use the pilot data from this study and the new measure to support future research regarding what can be done to better support autistic people in avoiding or recovering from burnout i asked gary if i should avoid the science and he told me no no some small amount of science is good so here you go so our data sources we had um it came from these three so the first one was nine of from our skilled employment interviews where people discussed autistic burnout just spontaneously even though we didn't ask them about that and that was from 45 autistic adults who had professional training it was a national sample with community-based recruiting and then we did 10 new interviews that were focused very specifically on autistic burnout again a national sample community based recruitment and we purposefully sampled to fit some demographics that weren't covered in the employment interviews and for that interview we started the bulk of it was just to tell me tell me your story like what happened when you experienced burnout what did it feel like what were the consequences on your life did you get out of it if so how those sort of a a narrative story about people's experiences and then we just ask them flat out how would you define it how would you what are the characters what are the three things that that would have to be present for you to know that this is autistic burnout and then we we asked them again flat out what strategies or advice would you give other autistic people and what strategies or advice would you give family members or other people in in their lives and then our third source was 19 key public online media sources so this was blogs videos twitter autistic burnout and some instagram resources that were compiled by our autistic community partners so we asked the community what do we have to look at and that list of 19 and then we also followed threads off of those blogs which i don't have a tidy count of yet uh analysis so we did a thematic analysis which means that we read everything and looked across all of our data sources for recurrent strong and pervasive ideas that were just coming up over and over and over again and we're looking at ideas not just categories and we analyzed at both semantic and latin levels so that means that we took people's word at face value but we also inferred some underlying meanings that maybe weren't stated explicitly based on the context of their story and broader social context we viewed it as a critical paradigm so reality as represented by these interviews we saw as a product of an interaction between a participant and the researcher and it's positioned within the broader context of the world for verification we've we have multiple coders who are working on it we meet regularly to discuss what we've found we have member checking so our aspire community partners have been looking at this and saying yeah yeah that rings true or no i don't think so and triangulation with other data sources that are out there community based participatory research yeah so uh the current status we have completed all of our data collection we are mostly done with the analysis we're like 90 done with the analysis and we're starting you know the dissemination piece we have not yet created uh the measure so that will be yeah we will we will need volunteers when we get to this stage yes and and i you can um you can if anybody wants to participate in aspire's research studies you can email me and we have we actually keep a little list of people who might be interested it's that it's on the last slide and also after the talk if you want to have business cards and like ways and the last slide will be left up during the q a so you can photograph it or write it down there as well now also i have a my my amazing research assistant is here so you can also give it to her okay so so what have we learned so far um so here's just who we heard from just to describe and frame the findings so we heard from people all over the country the oranges the burnout interviews and the green employment we tried to sample in the burnout interviews for some demographics that weren't represented in the employment interviews particularly we wanted a lower educational attainment and we also needed more males it's actually really hard to get males to participate in research so even though there's a gender imbalance in autism we can always use male research participants both sets of interviews contained a mix of people who used alternative methods to speech at times and who used disability services and both had people from a really wide range of ages um we don't have any demographic data at this time on the social media authors but um but we looked at those 19 primary sources and their threads so what i'm about to go through for our findings is combined findings from analysis of all three of those sources yeah sorry alternative and augmentative communication so alternative forms of communication to speech so like writing or letterboards or typed text to speech anything that's not blah blah blah so i i wanted to start this section with one person's description of what the experience of autistic burnout is like this is from kieran um i'm not sure if i'm saying that right because we've only read it on their public blog the autistic advocate from 2018 and it's one person's description but it's also a very good representative example of the experiences that people described in our interviews so our qualitative findings will begin to unpack this so this combination of stress masking social isolation loss of an important support person along with the overwhelming confusion of what was wrong with me why i couldn't really connect with anyone why people singled me out or played tricks or used me of what the hell was wrong with me and why i just kept hitting this wall over and over again was what led me to crash and burn out my physical body and mind started shutting down i could feel each system in my body closing off as gravity got heavier than it had ever been i didn't know what to do did not understand what was happening to me i had no way to communicate this it was like a switch had gone off my verbal ability to convey what was going on in my mind and body was gone i did not want to die i've never wanted to die i needed to step out i needed to remove myself from the environment and take myself elsewhere i needed to escape but the only way i knew how to do that was to die so i tried so um so a number of these components or features of autistic burnout in our data were echoed in that experience that i just read so almost everyone talked about a loss of skills including cognitive skills executive function skills so this is sequencing organizing understanding what take steps to take memory speech and communication general ability to cope overall ability to do things that one was once able to do like instrumental activities of daily living so going to the grocery store cleaning the house etc many people talked about increased sensitivity so especially to sensory stimulus one participant related having to quit their job as a cna because they became hypersensitive to the sound of the oxygen machine sensory overload increased sensitivity to change or social interaction or social stimulus participants reported increased autistic behaviors such as more stimming and more difficulties with speech and they reported more frequent meltdowns and shutdowns and also just this chronic exhaustion a weariness to keep trying this is a qualitative study and it's not designed to find statistical causality but the data did pervasively describe a specific list of reasons behind autistic burnout that people talked about and most heavily was this idea of external expectations chronically outweighing the person's ability to meet them and related because it's one strategy for meeting mainstream social expectations is this chronic masking or repressing one's autistic behavior in order to pass as non-disabled or non-autistic also change stress from change stress anything that would require additional effort to cope with kind of like flipped that switch and passed over the sort of threshold of how much effort could be done into a collapse and another pervasive theme related causes is this inability to recover quickly enough from the strains to meet the expectations constantly mass cope with stress change the unexpected so these themes are like rarely spoken of in isolation from each other but sort of in feedback with each other because as one thing gets compromised it makes another thing more difficult as you have to do one thing more it's more effort so i'm you know i'm a systems person so i'm always making dynamic models and this is not a this is not a finished or a final model and i'm not happy with it yet but it's just a start of playing with possible dynamics and the reason why i like looking at dynamics models is because if we can understand the structure of what's going on with something it often suggests where we can make a change to that structure that will then change the overall behavior of what's going on so i'm just going to quickly run through these loops one at a time in terms of what people are describing so i'm first going to just look at this little this little top loop so starting with the ability to cope and mask the more ability you have to to cope and mask the more people will expect of you and then the more you have to continue to cope and mask now i'm going to follow this medium sized one and i'm going to start here at resources for coping and masking so the more the more resources that you have to do this coping and masking the more you're going to get social financial rewards a job social acceptance those types of things the more you're going to be expected to be able to do that the more you have to use that ability to cope and mask but using the ability is going to drain your resources for having it okay now i'm going to go around the big one so starting here like the more you use your ability to cope and mask the more it's going to exhaust you the more exhausted you are the less energy you have the less energy you have the less resources you have to cope and mask the less resources you have you know they slip here this is where the burnout happens your social financial rewards disappear and everything comes crashing down so that's that's a a thought it's like i say this is this is my early thoughts you're getting my very early thoughts on this research no it's a plus because um the this is like yeah so the the question i i probably shouldn't have put the pluses and minuses in but i kind of had to do it for my own thinking a plus means that an increase or a decrease between the two follows so if this goes down this also goes down if this goes up this also goes up so it's a it's an it's an exponential increase whereas the minus means it balances so if this goes up this goes down yeah these are balancing feedback loops so it's a it's going to create what the behavior will look like is that you'll you'll do more and more and more and then reach a point where you just can't do any more and it levels out so and uh the increasing loop it's just going to go exponentially up so this these all get checked and balanced and that is a beautiful segue into the the other side of this which is that this type of dynamic actually leads to this type of behavior it's called a a growth and collapse type behavior where a system grows faster than the available resources can keep up with it and then it crashes and burns so that's sort of you know if you look at you know your your ability to cope and mask as being on this line that's your ability to cope and mask and that's where the you know burnout comes in and you can't anymore and you lose skills and you act more autistic it's again just playing playing with ideas but i i like this stuff because if you can start to understand what's really going on in dynamics then you can say something like okay wait a minute maybe we need to have less masking or maybe we need to lower expectations or maybe we need to add some support piece into this or change the structure so that it doesn't do this anymore anyway so impacts on life that was a little abstract so that was okay going back into a more concrete ways people said this impacted their lives they lost their job they lost their social standing they lost their sense of belonging in the community they found that others didn't understand like you could do this yesterday why can't you do it today and that created problems there was reduced self-esteem and self-efficacy so self-efficacy is like your confidence that you can actually do a thing self-esteem is self-worth there was increased depression anxiety mental health outcomes and self-injury and suicidality so what people described how it worked they talked about timing at multiple points in life maybe childhood not quite sure but most people's first story of autistic burnout actually happened around puberty or post-puberty so transition age or just before and then at other points of increased dependence increased independence sorry so like starting high school starting college starting a new job a new relationship um sometimes it was good things um so then maybe there's a period of stability there's sort of like a age 20ish range 30 where people seem to have a lot of energy and be able to maintain but then at points of increased stress if something happens that all burns or also aging the older people got the less energy they had to kind of keep up with stuff and there was a sense that these things happened more often as they got older people described pretty much uniformly a collapse and retreat to recover and often especially later in life they talked about an in complete recovery so they would recover from that acute burnout but they never really got back all of the skills that they felt they had before it had happened people talked about types are there types of it i don't know again this is early research but some people talked about kind of low level constant burnout that they were in all the time um some people talked about really intense acute moments of it where it just blasted their whole life and then some people kind of talked about like a social burnout like maybe that piece gets burned out but the other parts don't so we have a burnout a professional burnout researcher on our team so we've been looking at like is this the same thing or is this different professional burnout is characterized by exhaustion depersonalization which is like distancing yourself from your job and your work and like kind of not caring about the job you're doing anymore and reduce self-efficacy so that's you know again reduced feelings that you confidence that you can do your job um there's a lot of evidence in our data for the exhaustion and reduced self-efficacy there's virtually none for depersonalization so we it would have been nice if there was a perfect overlap but i'm not sure that there is so we've also looked at autistic burnout versus depression we have a psychiatrist on our team so we've been looking at this kind of carefully there's some overlap like feelings of worthlessness the exhaustion again it's probably insufficient overlap to be the same it didn't include for example the slowed or speeded movement or or the those types of like depression-related sleep disturbances it notably didn't include anhedonia which is sort of that not caring or not feeling if anything there was a lot of frustration people expressed because they continued to care feel and want but they felt incapable of taking any action on that because they were just so tired and couldn't do it and some participants who had a diagnosis of depression actually took care to differentiate it from their burnout when they spoke to us so probably not the same our research team is still a little bit away from a formal definition but the people we've talked with and the stories that i've shared online have summarized autistic burnout pretty clearly so i'm just going to give you three responses to the question in our interview of how would you define autistic burnout so this first is very operational and detailed so autistic burnout is a state of physical and mental fatigue heightened stress and diminished capacity to manage life skills sensory input and or social interactions which comes from years of being severely over taxed by the strain of trying to live up to demands that are out of sync with our needs so another participant gave it to us in an analogy that i think they were hoping non-autistic people might be able to relate to it's like promoting a neurotypical person beyond their own skill level until they flop only times 100 and sometimes more and lastly really succinctly autistic burnout is having all your internal resources exhausted beyond measure and being left with no cleanup crew so what's it mean and what can we do about it um what helps what is the answer to that tweet so i was invited here to talk with you all i'm assuming because i'm a scientist and conducting research with a team of academic and clinical experts which gives a certain amount of authority to the information and i'm not going to knock science obviously that's that's what i do and i also think it's very necessary to examine data with a critical eye and a systematic process because it's all too easy to jump to misleading conclusions otherwise but autistic burnout is also a problem that autistic people have been dealing with constantly in their lives and that's a kind of expertise too there's a vast amount of community wisdom that's been built up as we talk with each other about our experiences and try to communicate about them more broadly with others so one example is this infographic from carla fisher's asd page and it's got some similar stuff to what we found if it's hard to read i'll just run through it quickly so what is it late onset loss of functionality due to sustained monumental efforts happens too many young asd adults and many more all the way up into 50 or 60 years i would argue probably longer often directly related to failing at fitting in with neurotypical social skills despite faking it all the time to make it so carla says that an asd adult needs to know basic polite skills but they also need to know acceptance for who they are they need protection they need friends who get them um education on awareness and advocacy mentorship and vocational training in a strength area so you can do something that you're good at it doesn't require tons of effort carla says to never assume social skills learned in a classroom will work outside the classroom she says never underestimate how hard it is to be someone you are not neurologically meant to be she says never assume that nt social skills are the only way to success and or integration in society she says never underes never underestimate the importance of like people or friends for social interactions and practicing asd social skills so hanging out with each other and never believe the books have all the answers ask about autistic burnout on forums where there are autistic adults the resources for understanding and dealing with autistic burnout are also very rapidly evolving in the community for example this new resource on strategies for avoiding or coping with burnout was published less than a month ago with the queen of the drowned blog autism a women's network put out the resource on on the right uh which is likely too small to see so i brought a copy that i could read um and again you're going to hear a lot of the same stuff so signs lack of motivation hard to care about goals when everyday life is overwhelming loss of executive functioning abilities difficulty with self-care easier to reach overload or meltdown loss of speech selective mutism lethargy exhaustion illness digestive issues memory loss inability to maintain masks or use social skills overall singing more autistic may have a period of high energy before collapse this resource has causes which again we're going to sound like a lot of what we found in our more sciency stuff passing as neurotypical or suppressing autistic traits doing too much too much stress aging needing more downtime having less energy changes good or bad sleep deprivation poor nutrition dehydration illness sensory emotional overload and then the strategies that that resource lists are time scheduling breaks managing your your daily resources taking a leave of absence stimming more having a sensory diet exercise massage reminders and supports routines getting into a better environment or job boundaries and saying no dropping the mask facade spending time alone being quiet creative projects passions and pursuing special interests and paying attention to the reactions of your own body and mind um so much of the content of these resources is supported in our research which gives me a kind of funny sense of deja vu because back when aspire first started and wanted to work on improving health care for autistic adults nobody would fund us until we had shown that autistic adults did indeed have worse health care than other adults which to the autistic adults and family members in this room i'm sure it is kind of ridiculous that that was even a question but okay so we went out we did a study that asked if autistic adults had worse health care than others and oh my goodness they did but honestly the data from that study has actually really helped push forward substantial effort to improve improve health care um well outside of of the little you know the stuff that we work on um so although the strategies i'm going to go run through next are based on our scientific findings rather than these community resources i i really want to stress they're very consistent with the work that is being done outside of formal research by autistic adults with lived experience and not to throw that out because it's not not science all right so here's what's in our data so far much of which i said is echoed in those community sources since we only spoke to people who experienced burnout our focus was on what helped people recover more so than prevention perhaps not surprisingly time off from school job and life helped as did reduced expectations from both external sources and from oneself being more self-forgiving um time spent stimming or engaging in special interests for example one participant talked about taking long dancing walks with their favorite music in a comfort item sensory or social withdrawal although time spent in social interactions with other autistic people or with people who were understanding and empathetic and eager to engage in the person's special interest also helped in general just being able to take off the mask and stop that effort of suppressing autistic behavior was helpful to people's recovery and lastly in addition to all of these strategies just time like you don't do this and feel better it takes time to recover our research uh participants and online sources also had recommendations for things that family friends and other important people can do to help recovery or to potentially reduce the risk of it happening i sound like a broken record at this point about the reduced external expectations but it's probably clear why abilities outpacing expectations is that theme across everything also other people can accept the autistic person without the mask having people around who are who are accepting and who can provide emotional support and empathic connections without demanding even more were very important in many of the narratives of recovery really really important physical support was helpful for example just helping with those things like grocery shopping or cleaning the house to give the person a brief little break and lastly providing disability accommodations in order to just relieve the amount of extra effort and energy that the person is trying is spending just trying to function in an environment that isn't meeting their needs expanding out into kind of broader world beyond the individual experiencing the burnout in their immediate circle there are some potential wider considerations regarding what to do the perceived and actual need to mask and cope with a world that is not set up for one's way of thinking and sensing is driven in part by discrimination and stigma around autistic behavior so anti-discrimination and anti-stigma work might be a broader leverage point therapy and other structures with explicit normalization goals may need to be rethought a little bit on a brighter note system level changes that normalize disability might help reduce overall risk of burnout for example just being more visible as people with disabilities in the community and community settings like job and schools pushes forward this idea that disability is natural and okay regardless of where system shifts might have the most leverage professional clinical family or self-advocate communities everybody could just benefit from i think a deeper understanding of and just discussing this bringing this out into the open as i know this is largely a child focus or transition age focused lecture series i always feel a little bit nervous speaking to child focused audiences because most of my work is with adults but there are some very clear transition age considerations that emerged from our data that i think are important so many of the adults we talked to or whose stories we read experienced their first autistic burnout at transition age and this may be a particularly vulnerable time because of the increase in expectations as well as the typical but also very stressful amount of developmental and environmental changes that just happened to everyone around that time so in the stories that we analyzed people related mostly not having any idea what was happening to them that that first time and it was very scary for some and some of them it led to significant mental health crisis and even hospitalization and in multiple cases people related that the burnout was what led to them getting an asd diagnosis in the first place so if there was a silver lining in some of this a lot of people were saying you know the good part of my burnout was that i finally got the asd diagnosis and understood what was going on with me these are just two little narratives from the transition age stuff so one person said it was intellectually gifted but emotionally and socially way behind my age i burned out completely at age 14 from stress socializing issues in the start of an erratic puberty only now do i see it as burnout and another story it actually started in middle school my sensory issues got a lot worse than i started socially withdrawing like hanging out in my room and going into shutdown and then my parents were really concerned because they thought i was depressed and for that instance of burnout afterwards i never got to the point where i was before like i couldn't deal with sensory issues the same way i went from having no diagnosis of autism to having a diagnosis of autism so it was a significant point in my life i think that instance of burnout was caused by the social differences and interaction of a teenager versus pre-adolescent years so just some things to to think about younger people all right so as i put together this talk i realized that telling people to reduce expectations reduce expectations burn out his cause by redu inability to meet expectations needs to be taken very very much in the context of the types of expectations that people described in their stories i feel this is really critical to add because all too often there are reduced expectations for autistic people and others with disabilities that lead also to reduced opportunities and a cascade of other failures leading to reduced and poor life outcomes and which can be very discriminatory so in our data expectations were never things like my intelligence or my ability to succeed in my chosen field of interest in employment or taking care of my children indeed finding good fits with school work activities family and community and obtaining reasonable accommodations to support disability and reduce that unsustainable effort of masking were often named as ways to prevent or help people recover from burnout so the expectations in our data were almost always the expectations to do all of the things that non-autistic people can do in the same way that they do them so just in other words do expect us to be able to achieve our dreams just don't expect us to always achieve them in the same way that a non-autistic person would i asked the aspire team for key takeaway points that they felt i should leave you with especially the family members and professionals from our work and this is what they said so these points are taken from partners who identify variously as autistic family members or academics and also clinicians so again the more people need to mask the more likely they are to experience burnout educate yourself about disability rights and cultivate positive autistic or disability identity teach young people to pace themselves and to set flexible boundaries for themselves so that as resources change they can flex with it focus on autistic strengths and perseverations to reduce the risk of burnout for example choose activities or employment that are in alignment with special interest and i would add to you know seeking out people who are your own kind whether they are autistic or not be sensitive to the possibility that decreases in function so when someone can do something at one point in time but is unable to do the same thing at another time this may be a sign of autistic burnout okay because i have to say it the study has some limitations um mainly you know most importantly with a very small qualitative study with a convenience sample and the burnout specific interviews are missing some very important demographics it was also designed to get an in-depth understanding from experts it was not intended to generalize to a population this is preliminary exploratory work and the analysis and interpretation presented here is actually still developing and has not been finalized it's close enough to the end so i feel good about presenting it but there you know when you read the final paper it may be a bit different the next steps where do we go from here more research is needed measure development increased understanding of the causes and associations i think a greater understanding of role in suicidality and then after understanding we need things that are going to relieve or prevent it more conversation is needed autistic people have been talking about this experience amongst ourselves for a really long time and i think it's time to broaden that discussion outside the community so it can gain more potential for action and then you know just consider if there's something you can do to help prevent autistic burnout in your own or someone else's life so before we go into questions i want to give a big thanks to the aspire team for all their work as well as to our research participants whose generosity and sharing their experiences is critical to everything i'm also going to make a shameless plug for uh for new this new journal autism and adulthood which i'm the assistant editor for we have autistic people actually i have so i have three copies the last three copies of the preview issue and then a bunch of little flyers if if you want them afterwards so we have autistic people involved on the editorial board as reviewers and as authors and we're looking for article submissions including insights from autistic and other non-scientist community members and also i don't know you might find us useful and now i guess i'm i'm happy to take questions on the autistic burnout research and also i'm happy to discuss community engaged approaches to research or collaborating with autistic adults and young adults or any of aspire's other work with employment healthcare it's your turn great thank you door for round of applause thank you very much dora um we'll take uh some questions in the audience here um while also people that have questions uh via facebook live start typing them away we're taking them down and we'll get to those questions as we tabulate some of those questions anybody in the audience here that has a question i'll bring you the microphone i see one on the back i'll come up to you and we'll have plenty of time for various questions hey uh do you believe opportunity cost comes into play um when autistics experience burnout especially the more prolonged episodes or pivotal times is it where there's takes longer to recover do you think there's opportunity cost and that they're not able to invest as much of themselves or you know at the at the same level or at these in these opportune windows can can you define opportunity cost for me opportunity cost would would be like if as an example if i had a hundred dollars versus if i had 10 i'd be able to invest more of it and then you know get more ideally get more equity back be able to invest more than if i had 10 i'd only be able to invest this much and only be able to maybe recoup or profit this much and i'm you know playing with a much smaller reserve or you know is the idea that if you have less of a resource investing any piece of it is actually a bigger commitment than if you have more of the resource um yeah like if basically if you're held back at any point in any way from something that would be the cost of opportunity you would you would lose some of what would have been or entirely all of an opportunity that someone with more resources would have had actually um to cope and mask myself or do i use my resources and getting things done is that what you're talking about or yeah you'd have to take bonds from one's career or you know um just be that much more you couldn't invest in areas of your life you know having to focus on you know self-care and recovery i can answer i mean i'm not gonna answer from the research at this moment i'm gonna just sort of answer from my own experience which is very much yes like i make terrible choices all the time because i've got you know i've got maybe the same amount as everybody but this much is going to disability management and they don't have that going on so i mean i have a kind of underlying idea that this autistic burnout may actually be a broader disability burnout phenomena um i know that's not what we looked at but but i would say at least for myself yeah and and i do think that the economic analogy if you're thinking of of resources as a quantifiable thing that you can put into a model those resources could be your spoons you know i i the spoon theory for anyone who doesn't know it is is this idea that you know when you live with a disability you wake up with a certain amount of spoons and you have to use a bunch of those spoons just you know to do these basic necessities and then you're left with like two spoons and you have to figure out what to do with them whereas most people who don't have to do all this disability management they have all those spoons throughout the whole day that they can use as they will so that's i mean i think it it gets into that kind of idea so i mean i would say yeah i think so so actually circling back and making it an economic issue did you do any research in terms of people from people from lower income households like um i was a full-time student and working and i crashed and burned it was horrible i could not keep up everything stopped so has there been any uh information collection as far as income and if you know certain people with privilege potentially burn out less i mean i'm not saying that people of higher privilege don't burn out i'm just saying i'm asking if there was any differentiation there so this the sample wasn't big enough or quantitative enough to really to do an analysis that would differentiate i can say so for the employment interviews we did ask about um about income and even though we were talking to professionals it was still pretty low income group i mean it's this is in the realm of you know health disparities and you know when you you're marginalized in one area it cascades all the way through so in general it's always been a lower a lower income sample than the general population would be uh we didn't ask that question of the people we did the burnout interviews of so i don't i don't have a sense for that um the so the the employment people that we talked to where we do know that some people who had higher socioeconomic status actually had worse burnout problems because what they were struggling to maintain had more riding on it like the moment you get that higher paying job and you get that mortgage and you get that stuff but then you know the people who were from lower incomes also had different stresses so i think i don't know it would take more work to really answer just qualitatively it kind of is bad no matter what circumstance you're in because there's always some some kind of struggle to hold pieces together i actually have two questions uh with the dynamics system did you guys look at having other illnesses and disabilities and physical problems outside the spectrum contributing as a stressor because i know i have a constellation of things that definitely take a lot of spoons and then that makes dealing with the autism worse and then that makes dealing with those worse and it didn't seem like there's i don't know if maybe that was part of the social and financial rewards it wasn't that wasn't in the model but it wasn't i mean that model is an oversimplification that's what a model is kind of by definition is like we're going to take out all the details that make this real life so that we can try to understand what's even going on here those system dynamics models like that actually can get really huge with like hundreds of little bubbles in them and if i were to make you know more complex ones which actually i hope to because i'm a dork and i love system dynamics models um but i uh i that would absolutely be a bubble for that because it was in the interviews like people did talk about that they did talk about having to manage other disabilities and mental health conditions making it much harder to prevent a burnout and then also the burnout making it much harder to take care of this so that those feedbacks were absolutely in what people the stories that people told us okay yeah and the other thing was you're talking about when you were testing things and they had problems with executive function and things like that did you do any official like neuropsychology testing like the color word thing or recall okay no these these were quali these were just interviews so so we sat down with a person we had a list of structured questions and so the first question was was something along the lines of like okay so so you said that you've had an experience of autistic burnout if you've had more than one we can talk about more than one but you know start with the one that that seems the most important to you and just tell me the story of what happened like how did how did the burnout happen how did it make you feel like so it was really you know kind of structured and then they'd you know we'd have a conversation and then and then the next question was so how would you define autistic for now so it was really it was much more what you do is you have a conversation that's structured in order to get at the kind of information that you're interested in which is what is what what is people's experience of this thing and then you analyze that data so um and it's it's a kind of it's a rigorous scientific way that you analyze it but it's also relatively subjective it's kind of like when you're doing english class and you're kind of like summarizing key points that are in essays that you've read that's sort of how the analysis goes it's got a you know it's got a rigorous structure to it but one comp is it in there no no yes yes the the uh uh journal our journal that uh dr raymaker was referencing is now in the um comment section of the facebook live just for for all you people watching uh any other questions in the room here before we jump into some facebook live questions let's see if i can i'm going to jump over you and then there we go going back to the spoon analogy is there any way to start the day with more spoons like exercise anti-anxiety medication in other words could you build up your reserves so you can go longer and you don't get as exhausted as soon i don't know i mean i think that i mean i don't i don't have an official clinical answer to that i mean i have ways that i store up my spoons and i just store up a lot of spoons for this talk and i don't know that my ways of storing up spoons would work for your ways of storing up spoons but hey yes but it's also huge there's a lot of trial and error i think i actually um one of the things that was in the the big flyer that we can't read very well but um it's a sensory diet um so is it was it this flyer yeah yeah do you want do you want to read it redder because i can well i know it's on there i've seen it before okay um but yeah sensory diet so um and like just protecting yourself sensory wise um can help you um conserve spoons like for me if i like wear my sunglasses and my earplugs and my hat when i go outside i'm not as drained and then i have more energy to do something else and some other things like that you can do to increase spoons are like other sensory diet stuff like for me proprioception things like um like bouncing up and down on a ball you know like those exercise balls it like builds me up gives me some energy um but that's definitely something to to look into if you want to help increase your energy i i my work desk has one of those balls and people are always kind of like don't understand in video conferences why they see me doing this so i just wanted to also share that the um the slide you put up from the autism women's network we were able to get that link so that link is also available within the facebook comments thank you so much i just want to thank you for centering autistic experience as the experts in your research i think that that's so important and i also like that you're shifting the intervention spotlight a little bit externally and saying hey since the autistic experience is so individualized it's so different why are we trying why are interventions so formulaic and it should we should look outside of the individual and look at what's happening around them and maybe normalize some of these spoon refilling activities so that they are easier to access and and we can cope a little bit better and i also cannot help but think about how this flood of feedback from autistics kind of flies in the face of what our current standard of intervention is especially for young people and especially what people have access to through insurance it's really it's behavioral training at this point and i think that that that doesn't align with this goal of reducing the expectation to be neurotypical or to present as neurotypical so i hope that this shifts the conversation a little bit more toward how we can um yeah change the way that people have access to therapies and to interventions that um that are a little more well-rounded in their approach so thank you i i hope so too and i also feel i feel strongly and also the rest of the community partners and aspire feels really strongly about this because we've had discussions about it that service interventions almost often put the additional burden of doing something back on the disabled person or back on the autistic person so we're i know that i personally am really interested that's why the employment research i'm kind of looking at workplace culture change which is something that we do know something about and have used with other populations like veterans um is to like get that like let's not put one more burden to do a thing on us but shift that burden a little bit to the possibly more you know quote able environment um so i i hope so i hope that shift continues i've seen you know it's i've been i've been at this for 12 years now and it has changed faster than i ever dreamed for the better at the start so i think there's hope so i just like to say thank you um i just this is the first time that i've seen something presented in such a precise and accurate manner that describes what i and i'm sure a lot of other people go through um all the time and this research to me is extremely important i hope you continue on with it thank you and thank you for showing up like this is like the best room i've ever talked to like it's all a room of my of my own people so it's it's nice it's nice to it's nice to have your questions and and thoughts i like your thoughts too i think we're running low on the on the facebook live questions which is fine um but so any other more questions in the room we can keep this going this is a good discussion i think but i have one question um so hello thank you so much for being here um as a parent of a child with autism and because i care for autistic people beyond my son and the community looking at ways to relieve and prevent burnout i hope to hear a little bit now and i've heard a lot already but um if we can keep that research going so so people like me can have things at our fingertips um to to help relieve some of that and prevent it for our loved ones thank you thank you that was i i love hearing that and i hope we can i hope that we can continue this too you know this is this is the very start and this is the part where we're having to prove to the the larger you know funders like the nih that yes this is a thing and yes this is a problem and sometimes you have to back up and do this kind of really preliminary work just to say okay no this is really something we have to address kind of like what happened with the healthcare study where like we're not going to fund you because we don't know that autistic people have worse health care so um so that's kind of the stage we're at with this research right now but i also think that you can benefit i mean obviously right away from the discussion that's going on within the community and within this room and you don't have to wait for the research i mean research is frustrating there's a lot of good about research i do research for a reason but it's also really slow and there are more immediate answers out there in the wisdom of the community in this room hi so we have one question from facebook this is from jen and she's wondering what do you say to people when they say oh you just need to take a break there's there's always respite um for her respite isn't always the answer or available is this a she is a respite from her child or respite or her child needs i i'm sorry i will ask her i'm not because i can't necessarily answer it from a parent's point of view we'll come back to that in a second we'll get that get that clarification have another one in the room here hi hi um i'm a child and family therapist so provider and also a parent and i was curious i know you said research takes a while but how soon can providers expect to see the scale or measure to use for autistic burnout i'm i'm thinking of many child and family therapists would would look at someone experiencing autistic burnout and think it's depression and if the autistic person didn't wasn't able to label it in the way that so many other folks can and then the interventions would lead towards things that wouldn't necessarily be helpful so i'm just curious how soon we might see something that we could use in a clinical setting so i let's assume that everything goes great with the pilot like let's assume that we have an awesome pilot and the constructs hold together and it looks like it could potentially be a valid measure i if everything goes smoothly then there should be a paper out on that i would say mid next year so the research itself the grant that's funding this work is up in october and you're never really done with the grant ads but we should pretty shortly after that be able to start compiling stuff and then you know you never know how long it's going to take for something to the paper to get written in for it to get published but but uh i i i'm lucky enough that i i currently have gotten a grant that's going to protect a lot of my time so i'm hoping i can use that to actually get these papers out in a timely manner what's going to come out first though which may also be helpful is that this fall i'm hoping to get the paper on this workout so this work like what i just reported on here the qualitative piece we're really really close to done with this analysis and as soon as we're done we're hoping to get a paper out so there there'll be probably two papers from this one is just on this so that you can use that to show people like here's a thing and here's how they're characterizing it and then the measure will come you know some sometime later but you probably won't need to wait a year i mean if it's terrible if the measure bombs and we need to go back to the drawing board it's it's it's science we don't really know the answers to anything until we get until we see the data so kind of back um to jen's question about um needing respite so she is the parent of a child with high with high needs and another person has also commented as well that they also have a son who is severely autistic and she has mentioned throughout the comments that um she is experiencing burnout with caring for her son so when people are telling her that she you know should just take a break and respite as they cure what is there some she's looking for some sort of guidance on how to answer those um questions or those responses and i don't know if there's i'm kind of looking around so i'm i'm like i'm wishing right now that i could teleport the um you know the burnout expert who's on my team into this room to answer that question because that's what she does um i don't i don't particularly have expectation i mean i'm a i'm a system scientist and and this is that that is caregiver burnout is outside the scope of this and caregiver burnout also has a lot of work that's been done on it so i think there might be some resources out there when i was you know preparing the the grant proposal for this work i did a big lit search on autism and burnout and every possible combination that you could come up with on autism and burnout and got back i'm not going to say like thousands upon thousands of articles but there were a pretty substantial amount of articles that came back on caregiver burnout teacher burnout provider disability provider burnout parent parent family burnout so i know that that it is a thing and there are resources out there i know that's not a very helpful answer but it's a little bit outside the scope of what i do say something i'm a family advocate at the autism center and i work with parents to help them find respite so i can connect with jen later because really tonight is about autism burnout and jen may have misunderstood that and i'm happy to chat with people online about local respite opportunities for parents um who many who suffer stress levels like that of combat soldiers like many of you in this room who have suffered stress and not not because of you we love you um and i'm sorry that you know it's just something raising a kid with severe autism is stressful but it doesn't mean we don't love our children dearly um the other thing i wanted to say is um and this is a difficult question but i'm going to ask it just because i want to i want to it's kind of we're at this interesting time in this really groundbreaking research that if we talk about the remedy to this how we can relieve and prevent it some might say that could be the reduction in therapies and um and not not such a bad thing right because sometimes therapy can cause stress just be different and i would say as a parent of a severely affected child the therapies have saved him in some ways he can cross the street safely he can ask for what he wants but i always have to grapple as a parent did that cause him more stress than the ability that gave him so we as parents have to ask these questions did the stress level caused by the therapy did it pay off in the in the skill he got so as scientists and providers think about it parents also have to weigh that out and have tools to weigh it out well and we have to weigh it out too there was a an interesting piece of one of the interviews where the the person was talking about learning learning um like when it was necessary to mask and when it wasn't as an important part of kind of her equilibrium process and you know the interview went on about like you know wouldn't it be good not to mask and and like well but you have to sometimes and i mean i think that neurotypical people also have to mask sometimes like i don't think this is necessarily a like black and white either or um i think there are some times when it's kind of not safe to be yourself even if it has nothing to do with autism so so i don't like i wouldn't say like this is just terrible don't ever do it and sometimes you really don't have a choice about what life is throwing at you too but i think that you don't need to do that all the time in every you know if you can get a job where the job doesn't care if you sometimes work under your desk then it's true story from my life [Laughter] then that's good you know that's that's not a time when you absolutely have to the way you might absolutely have to to safely cross the street so yeah yeah well i think that was one of the things that the person was talking about in the interview was yeah i think that i think that piece of the interview might have been the advice for other autistic people portion if i'm remembering correctly and that was her her thing of like we need to kind of get a better grasp on learning how to teach each other when it's important to put the mask up and when it's not like it was kind of that that um determination skill of when to use it and when not to that that she was talking about which i think a world where we do less of it but we live in this world so as we shift the system we have to make hard decisions about where the spoons go first off thank you for actually listening to peop to us but to people about when they say no this is not depression it's different having both i have been arguing with so many doctors for years now that know what's happening now is not my depression i know what that feels like but going on from that with things that maybe help get the burnout better has anyone had with everyone going oh well it's depression has anyone had any success with the typical things they tell you for depression well even if you don't feel like it you need to go out and exercise or just get up and do things anyway has anyone had success with that or has that been counterproductive nice don't don't take this as hard science my sense for that and i'll kind of in a large part coming from my own personal experience is no but it's my experience because you know in depression it's like it's like you have to kind of get yourself out of snap yourself out of a funk right which is really different from a legitimate exhaustion which is like no i might like i really am worn down to a nub like and adding one more thing isn't gonna snap you out of it it's just gonna wear you down past the knob yeah and i i don't again don't take this as scientific or clinical this is kind of me just having a normal conversation it's just nice to have someone else go yeah but i can say in the interviews nobody said that like nobody gave there are things like exercise and doing things that helped but it was in the context of because it's my special interest because it's a stem because it helps my sensory diet like people were doing the things because they were connected to the things that fed them the things that gave them energy instead of the things that took it away thank you pure exercise um with no change in dieting no change in anything would definitely deplete your energy levels but like i was 103 pounds like two years ago and then i kind of go through these little spurts 200 130 whatever but um you need to change your diet as well to maintain that energy level to you so it's so many little factors that you need to correspondingly move around um i feel and so it's like one change yeah but then you might have to change something else as well so yeah like exercise has worked for me but it also you need i need to do a bunch of other things to maintain that energy level otherwise i will burn out really quickly i i exercise a lot and it helps me but it's also a stem i totally agree with what you said and and uh this is something i like to talk about a lot um like i've i've been through burnout and like feeling depressed and thinking i was depressed and going through the treatment for that and i found that all of the like positive affirmations and like coping skills that you learn for depression were things that i already knew and i was already doing and like i could try doing those until i was blue in the face and it just wouldn't really decrease my exhaustion or make me feel better and what i found that has helped a lot is letting myself delve into special interests and things that i'm passionate about um that's i mean now i feel like zero depression and i've just been writing and just doing whatever interests me which i wasn't letting myself do before um and uh also like sensory stuff too just like i think those are really the things to focus on for for us being autistic um rather than like putting a positive sticky note affirmation on your mirror like that only goes so far maybe that goes into the social expectations thing because everyone gives you this list of here's the things to do and you're like i already know all of that it's not working then that those things i can say are supported in our science so like when people are talking about how did you get out of the burnout and they're like like that's what they're talking about is special interest sensory diet stimming hanging out with other autistic people hanging out with people who accept them and like those all of those things are are in the those are in the data yeah uh so i again i like to circle back to things um we were on the topic of therapy and i just wanted to let people know that the therapy i received taught me that i could never take off my mask and it contributed significantly to my burnout especially considering that until three years ago i didn't know that i was autistic i didn't know that i had sensory needs and it wasn't until i was meeting those needs that i was actually able to attend college for the first time at the age of 29 um so it's very important to teach people that they have autonomy that they don't always have to mask that they are allowed to stim because it is crucial to our development as human beings and that's all i wanted to add on that subject and non-autistic people stim too it's just socially acceptable when they do it now if you ever tap your pencil or you know jiggle your leg i think we have time for maybe one more question or so um as we start to wrap up yeah great and then well as we disconnect from facebook live then dora is around also maybe if there are people that don't have kind of questions they want to put out there hi um i wanted to say thank you this is this is a revelation to me i was uh diagnosed with autism about six months ago um after an episode of of what i now realize was really intense burnout um and so since i now know this about myself i'm having to reevaluate a lot of different things um and i was wondering if if you could say a little bit more about the expectations and lowering the expectations there was a slide the caution that it does not mean reducing expectations about achieving goals but is is that realistic i mean am i going to be able to accomplish the things i thought i could accomplish in my life when i thought that i was holistic it seems like there's a fine line between expectations and hope and i'm wondering how do you reduce expectations without reducing hope yeah i i don't i mean i can't answer that without knowing the future obviously um i i don't know i mean i i expect a lot out of i have a kind of aggressive hardcore career going on but i also don't expect to do any part of it the way that a lot of other people would and i also had to release a lot of expectations of what someone in my position should do like i barely ever travel you know if i actually want to get be top researcher in the world on any of this stuff it's it's probably never going to happen and i've learned to kind of accept that that doesn't mean that i can't have an impact and i certainly you know i have my bouncy ball at home everybody knows that i'm autistic i work i work in the school of social work where it's an environment when i first started working in that department as a research assistant i i was actually working with somebody who also had a disability and she changed all of the lights in her room without even asking me to like get rid of the fluorescent bad lights and so like i kind of knew that i had walked into an environment that was good so i think there are ways that we can navigate and find spaces where we can find our dreams part of this slide was a a reaction to a lot of people get told oh your child's autistic that means they're never going to amount to anything in life and i wanted to make sure that that wasn't what we were talking about um i i yeah there was another thread i was going to say about that i kind of lost it for a sec give yourself time and patience to re-navigate that i didn't and i you know now i'm on facebook live so i'm all very self-conscious about what i say and what i disclose here um but i i mean i would not have gotten into research if i hadn't also had a significant burnout um that led to a diagnosis that led to loss of job that led to a lot of stuff and i remember even my special interests hurting for a while it was so bad and i have a lot of bits of privilege too and was able to re-navigate myself into this situation that is actually very carefully designed to reduce my risk of burnout right i am in absolute control of my schedule i am in absolute control of my physical environment i get to choose who i work with i you know so it was very kind of carefully constructed to not require that asking stuff i still feel like there was something i wanted to say but if i if i think of it later i'll oh but be forgiving with yourself while recovering because it it's yeah just do we have one final question from facebook this is from mike so i'm going to read his question exactly i am 28 years old and i was diagnosed in 2016 and i have begun to disassociate whenever i mask i also burn out more easily i am perfectly fine in my comfort zone but once i need to mask it's as if i'm taking control of the mask in the third person in order to exist in the real world is there any research that notes the lack of self in a masking not that i know of but i love that question and i hope that it well i'm glad that it's getting recorded because i'd like to return to that i think that's a very good question and um i can i can ask the the burnout people on on my team because there might be something that's been done in other populations around that i think it's i think that's an interesting and important question that i don't have the answer to but i'm glad you asked it yeah um so would it be we have included within the um link at the end your contact information that you had to your website and your email address uh so we will um mike if you're listening if you could please um connect with dora there that would be fantastic and hopefully more to come on that research i think you all can there you go now it's on i know well asked for a round of applause last time and that maybe is a maybe negative sensory experience but maybe we'll do the i like this this is a good so everybody give a nice little wave for dr rainmaker and thank you so much for coming um and we'll hopefully see you next month have a great another great autism 200 series and the sun's still out out there hopefully maybe the rain's gone cross your fingers when you get out there and have a great evening thanks

Channel: Seattle Children's

Views: 151,833

Keywords: Autism, ASD, ASD adulthood, ASD burnout, ASD coping, ASD spectrum, ASD mind, ASD mental health, Seattle Children's, Seattle Children's Autism, Seattle Children's ASD

Id: KRmKuUkz1Ww

Length: 91min 55sec (5515 seconds)

Published: Fri Sep 04 2020

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