AUTISTIC BURNOUT: In Conversation with Transforming Autism - Dora Raymaker

Summary

The discussion delves into the phenomenon of autistic burnout, a syndrome resulting from chronic stress and a mismatch of expectations and abilities, without adequate support. It manifests as long-term exhaustion, loss of function, and reduced tolerance to stimulus. The research, conducted through qualitative studies and community engagement, highlights the impact of autistic burnout on health, independence, and quality of life. It emphasizes the importance of acceptance, social support, understanding autistic needs, and self-advocacy in preventing and recovering from burnout. The conversation underscores the significance of raising awareness and promoting a supportive environment to mitigate this pressing issue within the autistic community.

Takeaways

• 📚 Autistic burnout is a recognized syndrome within the autistic community, stemming from chronic life stress and a mismatch between expectations and abilities without adequate support.
• 💡 The syndrome is characterized by long-term exhaustion, loss of function, and reduced tolerance to stimuli, typically experienced over three or more months.
• 🧠 Research into autistic burnout was conducted through qualitative studies, involving interviews with autistic adults who self-identified as having experienced burnout.
• 🌟 The causes of autistic burnout are multifaceted, including life stressors, masking (hiding autistic traits), societal expectations, and disability management challenges.
• 🤦‍♂️ Autistic burnout can lead to severe outcomes such as loss of work, independence, and in extreme cases, suicidal behavior.
• 👥 The feeling of being dismissed or not understood by neurotypical individuals exacerbates the impact of burnout on autistic individuals.
• 🤗 Acceptance and social support are crucial in helping individuals recover from and potentially prevent autistic burnout.
• 💪 Self-advocacy, understanding autistic needs, and utilizing autistic strengths can help mitigate the effects of burnout and empower individuals.
• 📈 Early diagnosis and self-knowledge can aid in recognizing the signs of burnout and implementing strategies to address it.
• 👨‍👩‍👧 Parents of autistic children can support their kids by accepting them, fostering self-understanding, and advocating for a more inclusive and supportive environment.

Q & A

What is the definition of autistic burnout?

Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term exhaustion, loss of function, and reduced tolerance to stimulus, typically experienced for three or more months.

What are the main areas of findings from the research on autistic burnout?

The main areas of findings focus on four research questions: whether autistic burnout is a distinct issue, what characterizes and defines it, what causes it, and how it impacts people's lives and what might relieve or prevent it.

How was the research on autistic burnout conducted?

The research was a qualitative study involving interviews with autistic adults who self-identified as having experienced autistic burnout, examination of public internet sources where the community has been discussing the issue, and analysis of themes across the sources to understand the phenomenon better.

What are the three themes under the characteristics of autistic burnout?

The three themes are chronic exhaustion, loss of skills, and reduced tolerance to sensory input. These themes reflect the intense fatigue,退化 of previously acquired skills, and heightened sensitivity to sensory stimuli experienced by individuals going through autistic burnout.

What are some life stressors that contribute to autistic burnout?

Life stressors include transitions such as starting a new job or going to college, mental health crises, expectations from family, society, school, or work, masking or hiding autistic traits, and disability management which refers to the challenges of living in a world not set up to accommodate one's functional needs.

What are the impacts of autistic burnout on individuals?

The impacts include effects on mental and physical health, reduced capacity for independent living, decreased quality of life, and negative self-image due to lack of empathy from neurotypical people. These impacts can be profound and lead to serious consequences such as depression, anxiety, and suicidal behavior.

How can acceptance and social support help in preventing or recovering from autistic burnout?

Acceptance and social support validate the experiences of individuals with autistic burnout, reduce feelings of isolation, and provide a safe space for them to express their struggles without judgment. This support can come in the form of one-on-one assistance, community resources, and peer connections, all of which contribute to a healthier recovery process and prevention strategies.

What are some strategies for self-advocacy and self-knowledge to avoid or mitigate autistic burnout?

Strategies include setting boundaries, asking for help, maintaining good health, recognizing patterns in one's life, and using that understanding to make strategic decisions. Early recognition of burnout signs can lead to timely interventions, and self-acceptance can reduce the pressure to conform to neurotypical expectations.

How can parents of autistic children help prevent future burnout?

Parents can provide acceptance, accommodate the child's needs, help the child understand their strengths and challenges, listen and believe them when they express overwhelm, and foster a strong sense of self-esteem. This support and understanding can empower the child to develop self-advocacy skills and resilience.

What is the significance of having an autism diagnosis in relation to autistic burnout?

An autism diagnosis can provide self-understanding and access to disability accommodations which may help in preventing or managing burnout. It also allows individuals to connect with others who have similar experiences, normalizing their feelings and providing a sense of community and belonging.

How does the research on autistic burnout contribute to the broader understanding of autism and mental health?

The research highlights the unique challenges faced by autistic individuals, particularly in managing stress and expectations. It underscores the importance of recognizing autistic burnout as a distinct issue and addresses the need for societal and environmental accommodations to support autistic individuals' mental health and well-being.

Outlines

00:00

🧠 Introduction to Autistic Burnout

This paragraph introduces Dora Rae Maker, a researcher and professor at Portland State University, who is autistic herself. She discusses the concept of autistic burnout, a phenomenon that has been a significant topic among autistic adults for years. Autistic burnout is described as a response to chronic life stress and a mismatch between expectations and abilities without adequate support. It is characterized by long-term exhaustion, loss of function, and reduced tolerance to stimulus. The academic Autism Spectrum Partnership in Research and Education (ASPIRE) conducted research to define and understand this issue better, highlighting its severe outcomes such as loss of work, independence, and suicidal behavior.

05:02

📚 Research Findings on Autistic Burnout

In this paragraph, Dora Rae Maker shares the findings from her research on autistic burnout. The study involved qualitative research methods, including interviews with autistic adults who had experienced burnout. The research aimed to understand the characteristics, causes, and impacts of autistic burnout. Three main themes emerged: chronic exhaustion, loss of skills, and reduced tolerance to sensory input. These themes were integral in defining autistic burnout and understanding its profound effects on individuals. The research also explored the causes or attributes of burnout as reported by the participants, which included life stressors, masking, expectations, and disability management. The findings underscore the importance of further research and understanding to address this issue within the autistic community.

10:02

🌟 Impacts and Experiences of Autistic Burnout

This paragraph delves into the impacts of autistic burnout on individuals, as identified by the research. The impacts were categorized into five main themes: mental and physical health deterioration, reduced capacity for independent living, negative self-image due to lack of empathy from neurotypical individuals, and the exacerbation of secondary mental health conditions. The experiences of burnout were often centered around high-stress moments or significant life transitions. The paragraph emphasizes the seriousness of autistic burnout and its potential long-term effects on an individual's well-being and quality of life.

15:02

🛠️ Strategies for Prevention and Recovery from Autistic Burnout

The paragraph discusses various strategies that can help prevent or aid in the recovery from autistic burnout. These strategies include acceptance and social support, attending to autistic needs, formal supports like disability accommodations, self-advocacy, and self-knowledge. The importance of understanding and accepting oneself as autistic, setting boundaries, and having the ability to ask for help are highlighted. The paragraph underscores the significance of community support and the role of early recognition in mitigating the effects of burnout.

20:02

💡 Supporting Autistic Individuals and Future Considerations

In the final paragraph, Dora Rae Maker offers advice for supporting autistic individuals who may be experiencing or are at risk of autistic burnout. She emphasizes the importance of acceptance, understanding, and empathy. The paragraph also discusses the role of parents in helping their autistic children develop self-understanding and self-advocacy skills. By fostering a supportive environment and promoting self-esteem, children can be better equipped to handle challenges and reduce the risk of burnout in the future.

Keywords

💡Autistic Burnout

Autistic Burnout is a syndrome that arises from chronic life stress and a mismatch between expectations and abilities without adequate support. It is characterized by long-term exhaustion, loss of function, and reduced tolerance to stimulus. In the context of the video, it is a significant issue discussed among autistic adults, leading to severe outcomes such as loss of work, independence, and suicidal behavior.

💡Chronic Life Stress

Chronic life stress refers to the ongoing and long-term stressors that an individual faces, which can be both universal and autism-specific. In the video, it is a contributing factor to autistic burnout, where the constant stress takes a toll on the individual's mental and physical health, leading to exhaustion and a decline in functioning.

💡Mismatch of Expectations and Abilities

The mismatch of expectations and abilities refers to the discrepancy between what is expected of an individual and their actual capabilities, particularly in the context of autism. In the video, this mismatch is a key element leading to autistic burnout, as autistic individuals may be expected to perform tasks or meet standards that are not aligned with their functional needs, causing undue stress and burnout.

💡Qualitative Study

A qualitative study is a research method that focuses on understanding people's experiences, behaviors, and social phenomena through in-depth interviews, observations, and analysis of themes. In the video, the researchers conducted qualitative studies by interviewing autistic adults and examining public internet sources to explore and define the concept of autistic burnout.

💡Community Support

Community support refers to the assistance and understanding provided by a group of individuals who share common experiences or challenges. In the video, community support is emphasized as a crucial factor in both preventing and recovering from autistic burnout, as it offers acceptance, validation, and practical help to autistic individuals.

💡Self-Advocacy

Self-advocacy is the act of standing up for one's own rights, needs, and well-being, especially in the context of individuals with disabilities or unique challenges. In the video, self-advocacy is highlighted as an important strategy for autistic individuals to prevent or recover from burnout by setting boundaries, asking for help, and ensuring their needs are met.

💡Sensory Overload

Sensory overload occurs when an individual experiences an excessive amount of sensory input, which can be particularly challenging for autistic individuals who often have heightened sensitivities to stimuli. In the video, reduced tolerance to sensory input is one of the key characteristics of autistic burnout, making everyday environments and social interactions extremely difficult and taxing.

💡Disability Accommodations

Disability accommodations are adjustments or modifications made to environments, tasks, or schedules to support individuals with disabilities in achieving equal opportunities and access. In the video, disability accommodations are mentioned as a potential strategy to alleviate the pressures of autistic burnout by providing flexible work schedules, additional breaks, and instrumental support.

💡Mental Health

Mental health refers to an individual's psychological and emotional well-being, which can be significantly impacted by experiences such as burnout. In the video, the impacts of autistic burnout on mental health are discussed, with outcomes including depression, anxiety, and secondary mental health conditions arising from the state of burnout.

💡Self-Understanding

Self-understanding is the awareness and knowledge of one's own characteristics, needs, and experiences. In the video, it is emphasized that self-understanding is vital for autistic individuals to recognize the signs of burnout early and to implement strategies to prevent or mitigate its effects, as well as to advocate for their own needs effectively.

Highlights

Definition of Autistic Burnout

Chronic stress and mismatch of expectations as causes

Symptoms include exhaustion, loss of function, and reduced tolerance

Qualitative research methodology

Interviews with autistic adults from diverse backgrounds

Public internet sources as research material

Themes of chronic exhaustion, loss of skills, and sensory sensitivity

Life stressors and barriers to support as contributing factors

Impacts on mental and physical health

Effects on independent living and quality of life

Lack of empathy from neurotypical individuals as an impact

Acceptance and social support as recovery strategies

Importance of attending to autistic needs and unmasking

Formal supports like disability accommodations and mental health services

Self-advocacy and self-knowledge for prevention and recovery

Early recognition of burnout as crucial for intervention

Support for avoiding and recovering from burnout

Transcripts

dora rae maker is an assistant research

professor at portland state university

in oregon

autistic herself she's one of the very

few researchers into the phenomenon of

autistic burnout

dora for the benefit of anybody who

doesn't know

can you outline what autistic burnout is

and and

how it's experienced by somebody who

goes through it

yeah so uh autistic burnout is an issue

that's been a really big part of

discussion among autistic adults in the

community for many years

and it gives people a lot of the stress

and they report it leading to really bad

outcomes like lost work lost

independence and even suicidal behavior

but it hasn't really been researched so

the academic autism spectrum partnership

in research and education aspire which

is my research group that i

that i co-direct um we did some research

and we came up with this as a definition

so the definition that we came up with

is autistic burnout is a syndrome

conceptualized as resulting from chronic

life stress

and a mismatch of expectations and

abilities

without adequate supports and it's

characterized by a pervasive

long term and by that i mean typically

three or more months

of exhaustion loss of function

and reduced tolerance to stimulus and

i'll talk

more about how we came up with that

definition and how people are

experiencing it as

as we go along so you really

it's really i guess for the person who's

experiencing it

it feels very much like all their energy

is depleted

they can't carry on with what they were

with what they were doing previously

would that be a fair summary yes

so tell us about the research itself

yes excuse me

so with the the research it was a

qualitative study

so it was uh looking at people's stories

and experiences their words

we did 10 interviews with autistic

adults in the united states from a

relatively wide

demographic backgrounds and all you know

different geographies

who had self-identified as having

experienced autistic burnout and

we didn't define it because we wanted

people to define it for us

so that we just said autistic burnout um

and then we also included nine

interviews from a skilled employment

project

where people had brought it up

spontaneously

and then we also examined 19 public

internet sources

because like i say the community has

been talking about this

for years this is not some new thing

that's just happened

um and we recruited people uh it was a

us-based study

we publicized on social media we did

word of mouth

and we used community connections you

know people talk to their support groups

that kind of thing and then we analyze

the data by like looking at the themes

across the sources so we kind of took

what people said at face value but we

also considered a little bit of deeper

social context and we looked for what

like what people were saying really

strongly

and throughout all of the stories and

that that's what you're kind of looking

at is this weight of

of meaning that people are saying over

and over again and you you interview

until you reach

theme saturation which is when people

start you start hearing the same stories

over and over and over again

and then that that emerges into your

theme so it's a very exploratory

qualitative way

of understanding something that hasn't

really been

looked at before

and so i guess that doing that research

actually helped you to come to the

definition that you that you shared at

the beginning

what were the main findings of the

research so the findings

focused on four research questions so

one the first one

is is autistic burnout a distinct thing

from any other distress people might be

having and if so what characterizes and

how might it be defined so that's

that's where the definition came from

and i i gave you the definition at the

beginning but as we continue talking i

think that's going to unpack a little

bit more into what people were saying

so the second question was what do

people attribute

autistic burnout to what are they saying

cause did in their lives

the third question is how did it impact

people's lives

and then the last question that we were

really focused on in the findings was

what did people do that might relieve it

or that they felt could have prevented

it

so those are the the main areas of

findings so for the characteristics

um the first there were three themes

under that that were

go you'll you'll see these referencing

back into the the definition so

the first was chronic exhaustion which

was just a

overall like you you were just

you had nothing left and and i've i've

got some quotes from people

to to share so that people can

understand what this really felt like

and the the quote for that um

which is also ended up being the title

of the paper we just had published on

the study so there's there's a research

paper and

which has a lay summary if people want

some more information on this

um and somebody said that it was like

having all of your internal resources

exhausted beyond measure

and being left with no cleanup crew

so the second characteristic was this

loss of skills

which was things that you used to be

able to do

which could be you know doing your

laundry

or doing your job or

it could also be talking or being able

to

have a social interaction with someone

um so there was this loss of

of skills um lost uh difficulty

remembering things

they were cognitive level sensory levels

so there was like this

kind of a lot of loss of skills and

this is again a quote from one of our

participants said

the way i describe the way i define

burnout is a regression of skills

for me the really really scary part of

burnout is you don't know whether or not

you're going to get those skills back to

the point you had them

where you were before the burnout

and then our third characteristic that

people talked about was this reduced

tolerance to sensory input

which is a definitely something that

differentiates it

from it

job burnout or work related burnout and

um and also depression and some other

things

is this this sensory input piece

and that was uh

so the quote about that is

many routine noises have become quite

painful

therefore very difficult and taxing to

access public spaces shopping errands

parks and social gatherings

many artificial scents have started to

make me mad and i've had to make a

handful of foods off limits due to

texture

and this was people were comparing this

and saying that prior to their burnout

they were able to

tolerate a lot more sensory

input than they were after you know

during the burnout and sometimes even

after

did you get a sense from the research of

uh

what the causes of autistic burnout what

leads to it

yeah so i can't that the term cause

is it's a you know tricky in research

and i can't really talk about what

causes autistic burnout because the

study wasn't set up to answer that

question

but i can very much talk about what the

attributes were

what participants said was um

causing that which is you'll see this is

also became part of our definition

there's a diagram i sent you um that i'm

gonna

kind of walk through because this is

what people

people talked about over and over again

is happening and and this i can say not

everybody listed every single thing in

here

but it was again that weight of

theme saturation people were saying the

same thing over and over so on one side

what people talked about was life

stressors

and these some of them are stressors

that

can happen to anyone like you know

transitions a mental health crisis going

to

college just starting a new job but some

of them were a little bit more specific

to to autism so one of those stresses

was definitely masking so pretend

trying to hide your autistic traits

trying to hide if you were having a hard

time with something

trying to pretend to to be

normal whatever that is another stress

was expectations from from family

society school

work expectations to do things

again in very normalized ways

or to meet an expectation a

developmental expectation that couldn't

be met

and then there was disability management

so we we used that term to

to talk about um you know the functional

functional impairments or functional

issues

of uh like just having to manage the

fact that you can't do the things that

the world was set up to do right so i

mean i come from a very socio-ecological

model of disability where disability

occurs because there's a

mismatch between a person and their

environment

so what's going on here is you're having

to manage

living in this world that isn't set up

to accommodate

your functional needs um so all of that

is creating this constant like

cumulative load

on what you're having to deal with every

day

and then on the other side is a whole

bunch of barriers to getting support for

that

so uh one of the really big important

things that came out of this was that

being guest lit or dismissed was a huge

part of it people would say you know i'm

not

i'm really struggling here i can't do

this i can't keep up i need a break and

and people just say oh no you know

everybody feels that way

or well you're just being lazy or you

know those types of things

really um made it difficult for people

to take

a break or to take the time they needed

to relieve some of those pressures

um there was also you know we are

because we're marginalized a lot in

society

um there's a lot of history of abuse

and the types of things that can make it

really hard for people to have good

boundaries

or to feel like they can speak up for

themselves because they've been crushed

so many times

so uh there are also people who are

afraid to speak up i can't tell my boss

i need a break or i'll get fired i can't

you know tell my parents because they

just get mad at me

or people had never really learned those

skills

uh there was the inability to take a

break and then

sort of a lack of external resources or

support or services

like needing somebody to come in and

just clean up the house

but you can't access that service

because you're not considered disabled

enough

those types of things so that's like the

inability to obtain relief

so you've got this huge load that's

building and then every avenue in trying

to relieve that load starts getting

cut off and at that point the world's

expectations completely outweigh

your ability to ever meet them and the

result

was the autistic burnout and that's

that's what people talk to us about

it makes sense and i guess i'm wondering

is there any

did you detect any that any particular

groups were more susceptible i'm

thinking particularly of

maybe people who aren't or haven't been

diagnosed

as autistic until later in their life

because they will have been

um less able to have a sense that they

it'd be a good idea to slow down because

because they don't know that they're

autistic

and they think well i just need to try

harder and match what other people are

doing

so so some people did say that they felt

an earlier diagnosis

would have provided them with

self-understanding and the ability to

get disability accommodations

to help avoid it but there really were

also a number of people in our study who

had been diagnosed as children and they

had the same experiences of burnout

so i think my guess on that

is that those dynamics that i described

for how this happens can occur whether

one has a diagnosis or not

um although there are some tools a

diagnosis could help with

i think more research would have to be

done to really understand those

differences

uh but i will when you're when you're

asking me about

anyone who's particularly more

susceptible to it

when people related stories of when

their

burnouts occurred the first burnouts

were usually

identified at early transition points so

puberty or graduating from high school

or going to college for the first time

so i think that there are points

i don't know like that our study pointed

out to particular subgroups of people

and again it was qualitative it wasn't

set up to count numbers or do statistics

there's limits on that but but just from

the stories it wasn't

it didn't feel like there were people

with particular demographic

characteristics

who had these experiences more it was

more that the experiences tended to

center around high stress moments which

of course makes sense

because those are the times when when

expectations

ratchet up or when there's big changes

plus expectations ratcheting up and um

so yeah i think that that may be worth

noting but in terms of impacts so the

themes that we found for that the the

big main themes there were

five of them so the first was that there

were a lot of

impacts on health so this was mental and

physical health this was

um people

became became depressed or anxious or

had secondary

mental health conditions that occurred

because

of the state of burnout or they had

trouble taking care of themselves and

their physical health started to suffer

the second big impact was their capacity

for

independent living really

it took a toll on that so this is like

their ability to perform

instrumental activities of daily living

taking care of

taking a shower getting food

maintaining their employment sustaining

their employment sustaining important

relationships all of that

it had a big impact on their quality of

life not being able to do things that

they had previously enjoyed not being

able to

maintain the things that people need to

do

and then interestingly there was also

people talked a lot about the impact of

lack of empathy from neurotypical people

or non-autistic people

um that they were going through this

terrible terrible thing

and other people were brushing them off

or not

relating to it or telling them oh

everybody does this just

you know up and deal and that

impact had a really profound effect on

people's

self-image and um their mental health

so that was an interesting

extra impact that people might not

really be thinking about

um with this so i just have a

i guess it was the four those four

themes and i i have a quote here

of kind of an overall what that impact

was like

so this person said my situation became

way too much

after i quit my job i found it

increasingly difficult to speak to

people i didn't know and became very

depressed

i was unable to work for several years

after this experience and attempted

suicide

spent time in the mental hospital before

being able to get my life back

in order so that the impacts of this

art can be quite serious based on

what we're we're talking about so

so now let's talk about how to how to

make this not happen

another build for a case for why we

really need this to not happen

um so you had asked what people could do

to avoid it

as a starting point and people in our

study talked about

things that they thought could have

helped avoid it but they obviously

hadn't avoided it or they wouldn't have

yeah in our study um but

um many of those things were actually

the same things that people

said helped them recover from it so okay

maybe we can

talk a little bit about that the first

big theme in that is around acceptance

and social support

so people talked about getting

individual one-on-one support

from other people um and they also

talked about

community support having a

community and um in particular peers

people who had

been through this before talking to

other autistic people who had had

similar experiences

if only to just validate what they were

feeling

um but that individual support and

community support was also

it was very centered around acceptance

like

not making people feel bad for being in

the state or for not being able to do

something or for not being able to do

something

in a seemingly neurotypical way so there

was sort of there was a

a big kind of support and acceptance

from in a social sense um the second

point is

being autistic so um people talked about

first of all attending to autistic needs

you know stimming and

do doing your special like spending time

with your special interests

um doing the things you need to do to

keep yourself

regulated even if it looks weird um

unmasking being yourself and using

autistic strengths so

doing the things that you're actually

really good at instead of fighting

against your own nature

to try to do things that are in ways

things in ways that other people

expect um and again that's also related

to that whole acceptance piece you can

imagine that when you're told that

the way you are is wrong and bad that's

going to

make it lead to some of that

load that you're having to carry around

so the third

thing was formal supports so disability

accommodations

being able to have flexible work

schedules being able to take more breaks

being able to do things in your ways

instrumental support someone to come in

and do the dishes someone to come in

and clean your house and mental health

support

so there were all of those secondary

mental health conditions that followed

so getting help for that

also helped relieve some of the burnout

um reduced load so time off

breaks social withdrawal um reduced

activities

those are and these are things that

people talked about helping

get over it but there were also things

that people talked about

potentially having helped prevent it

like if i had

asked for more breaks if i had you know

if i hadn't

had to do quite so much if i had

time to work on my special interests

more

if i had been able to stim at work um

so there there was that's where that

like prevention

uh relief thing

uh dovetails so

uh i'm almost done with them there were

luckily a lot of

a lot of good ideas in here um the next

was self-advocacy

and health so this was about learning to

set boundaries

learning to ask for help keeping

yourself healthy

because you have more energy when you're

eating well

those things all of that self-advocacy

stuff

how to how to feel okay going to your

boss and saying hey

i need this week i need an extra day off

um or your teacher or

or your your mom i just can't do chores

today

and then the last big strategy category

was around self-knowledge

and this a lot of people said that early

recognition

of the burnout could have helped it

either be avoided or not be as bad so

there were people who were like well i

had no idea what was happening to me

and there were people who actually got

their asd diagnosis

because of a burnout

and they talked in retrospect about how

if they had been more aware that

autistic burnout was a thing or that

could happen

they might have noticed when they were

starting to feel the edges of it

and been able to implement some of these

strategies to

either avoid it or make it not as bad

this was a place where they said having

a diagnosis

was helpful yeah you could find peers it

was self-understanding it was

self-knowledge

people talked about understanding the

patterns in their lives and using that

to make

strategic decisions so for example

knowing like

well when i start feeling this way it

means there's too much on my plate and i

need to

or when i start you know if i start

talking

too much and really feeling up very

agitated then

i know that i need to like i'm getting

overstimulated and i need to go chill

out so

so all of that self-awareness and

self-understanding

was was the last kind of big

point um and this is

all of these are written up in detail

with people's quotes

in the paper we just have published but

it's also you'll find it again

a lot in the community resources

now that's great and and you did the

whole thing about

having a diagnosis or knowing that

you're autistic

it sort of takes away that sense of

confusion

that sense of well i just need to pull

myself together and be like everybody

else

um and it really increases the potential

to to accept ourselves

um because it sounds like a massive part

of what you're saying about how this can

be avoided and how it can be recovered

from

is just to say i am who i am and to

accept

myself and to ask others to accept me as

i am as well

yes um and that's that's sort of all of

it isn't it

it's a good buffer against that that

kind of gaslighting too because it's

very validating you can say

you know no i'm not just being lazy yeah

there's

something real going on here so if you

um if somebody knows somebody has

somebody close a friend or a partner or

or someone close in their family who

they feel is heading towards or might be

in autistic burnout

what can they do to help i guess the

acceptance here is a real huge part of

it as well

yeah absolutely um providing that

acceptance the social

support the instrumental support

accommodations and i think just

general understanding you know there was

that

that big theme in the impacts of not

of non-autistic people not understanding

and not having empathy for

the the experience um

so if if friends and family can have

some empathy for what the person is

going through in recognition of its

validity

i think that that would be i mean right

there you're eliminating one of the

one of the terrible impacts of this um

so yeah being empathetic not dismissing

the person's experience it might not

seem like they've been under a lot of

pressure

but that doesn't mean that they haven't

been and then

i'd also say by reducing expectations

because everything is about that

you know the expectations getting out of

control

um although i want to caution i'm

talking about expectations i'm not

talking about opportunities

so it's more reducing expectations about

how or when we might achieve our dreams

it might take more time it might need to

be done in a way that looks

different from how non-autistic people

would do it but don't

don't reduce your expectations that we

can have or achieve our dreams

right any dreams for any person

so that's expectations of how

and how long and in what ways not

expectations for being able to have a

full life

so it's actually taking the pressure off

and allowing those

those dreams to be fulfilled in a more

natural and fulfilling way than

under a lot of pressure absolutely

absolutely because dreams are a

wonderful

you know they're they're a part of of

your self-acceptance

and your boy right

yes because we all have a right to

dreams i guess yeah

and finally dora um

a lot of people watching this will be

parents of autistic children who are

very young

and after listening to the conversation

they may well be wondering

what can we do now to ensure that our

child to do the best to ensure that our

children

20 years in the future or 10 years or 30

years in the future

don't become victims of autistic burnout

how can they help

um how can they help early age a lot

that they can do so i the first thing

that you

you've pointed out a few times which is

so so important is accept us

for who we are even if that may look a

little different

that acceptance is is an amazing gift

let us do things that in the ways that

work well for us

use our natural abilities hope fight

ableism and autism stigma and work for

disability justice or you know whatever

term you prefer

um in the community because if others

accept us

and are accommodating as well then

that's that community

support community acceptance and support

so

parents can also work on the people

around them

um help us understand ourselves

right that self-understanding piece was

so important and as parents you're

helping your children to understand

to understand themselves too um help us

understand

what works for us and what doesn't work

for us not

how it should work for non-autistic

people or how it should look normal but

like to really understand how we get a

result

how do we get an outcome that is

worthwhile

that doesn't have so much

i guess overhead to it uh listen to us

believe us when we say we're getting

overwhelmed

and then finally i just you know what

you're gonna do anyway which is love us

and give us a strong you know give us a

strong foundation

of you know sense of self and

self-esteem to

deal with it when the rest of the world

starts to push back

um so that we have those self-advocacy

skills and the ability to ask for help

and the ability to set boundaries

as we get older and and you're not

around to help us do that

yeah dora thank you very much for

joining us uh it's been really

interesting yeah yeah thank you for

thank you for having me and for talking

about this it's um it's so as

you know we know it's so so important uh

to the community

that this is uh

brought more into the public

consciousness so that we can start

working to

make it a whole way yeah

yeah to have it recognized and and taken

seriously an action can be taken

thank you