Autistic Burnout: Defining, Measuring, and Understanding with Dr. Dora Raymaker

Title: Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew: Defining, Measuring, and Understanding Autistic Burnout

Autistic burnout is an urgent issue within the adult autistic community, attributed by many as the cause of negative outcomes including loss of health, work, independent living, and quality of life. Dr. Raymaker will discuss recent research by the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) to define and measure autistic burnout, and to understand its attributions and impacts. They will also present strategies autistic adults have found useful in preventing or relieving their burnout.

We are funded in part by the New Jersey Governor’s Council for the Medical Research and Treatments of Autism and by the NJ DOH

[Celestein]

I wish there was an organization which would support and aid autistic people becoming actual autism academics and researchers. I am a firm believer that we must care for our own and not depend on people who don't share our experiences and problems. It is crazy that autistic people still have to turn to studies and literature devised by neurotypical 'experts' who are looking in from the outside and are biased by their own perceptions, priorities and misinterpretations. Autistic people are often highly intelligent and dedicated, we are the very best possible experts.

[viktoriar]

Another aspect of this might be that a lifetime of masking can lead to an eventual inability to mask as well and/or for the same duration as once was possible. It is as though after so many decades, the cumulative burnout results in our true selves winning the battle. I also want to add that the loss of skills hit home for me. When I was working so hard to mask and deal with sensory issues, my artistic talent seemed to dissappear. Now that I don't spend so much of myself on working so hard to mask my true self, my artistic talent has flourished.

[mandaloolux]

Autistic burnout is REAL. I'm so grateful for youtube otherwise I would have gone the rest of my whole life feeling like an alien, feeling as if no one will understand me.

[dmjyjro]

As an autistic woman diagnosed this year at age 39, I went through multiple phases of autistic burnout leading to a state of what seemed to be chronic illness. Tested for every autoimmune disease under the sun, spent thousands of dollars on doctors. All the tests continually coming back “normal.” I had many caring doctors who took me seriously (as well as many who dismissed me as a hysterical woman who was hormonal or mentally ill), but a screening for autism was never considered, let alone administered. I couldn’t help feeling angry when I first learned about autism in women and autistic burnout. I have spent decades feeling broken, sick, weak, seeking help from medical professionals and finding now answers. I just wish this knowledge would filter through to the PCPs. They are the first point of contact for many of us who have slipped through the cracks, and they want to help, but there is a veil over this concept.

[thelondoners-lifeisart]

In my experience a lack of systems within my mind as well as in my reality caused my burnout. When information and expectation overload our inadequate framework of understanding and ability logic is irreconcilable. It’s not perfectionism it’s an inability to prioritize as everything is equally important because so much is wrong with the systems we’re living within.

[meechipeachi]

Born in 1972, and have had quite a bit of trouble managing living in NT world for last many years. No formal diagnosis, But I recently came across the term autistic. Burn out and wanted to educate myself about what it was.
I am both comforted and terrified. That that is probably what's going on in my life The last few years for sure.

[sherrym]

Recently diagnosed myself at 58, misdiagnosed from many
" professionals " through my life. The biggest thing for me is the absolute lack of recognizing this especially in woman, and having to do my own research. Plus societies lack of knowledge and utter abuse in many areas of my life. Left with cptsd, adhd, sometimes suicidal thoughts, especially being alone with no help, family or friends that never understand or care to. I've been trying to survive because of my dogs, that's all. Plus in poverty because I can't hold a job. Thank you for these vids, gives me a little hope and knowledge.

[carrerahorse]

my 24 yr old son is in the of applying for disability services. too high functioning seems to be the problem. all of this resonates with my son's experiences and I believe he has experienced burnout during several times in his life

[galespressos]

It is all true. Wondering why on a physical level it happens. The triggers are very relatable. It’s dangerous becoming non-functional in many areas or too slow to do what is needed, and could seriously end up dead, either by accidental suicide or ending up outside without sufficient work or not able to get organize help and freeze or end up malnourished. Gaslighting is real, stupid, and asinine.

[normantouchet]

My Mom did good till I was around 16, in for some reason, she got stuck, in all she could do was sit for over 40 year's, I understand today what happened to her, uncles same, back then, if you see me face to face you might think I'm normal, but spending a little time with me, I can't hide it as good as when I was younger, even the new kids born in my family or showing same sines, yes good help is a blessing, all of us don't have this help.sad

[beckacheckaenterprises]

WE to CHANGE the name of “Autistic Burnout” as non autistic people think it’s just typical burnout and it’s SOOO annoying 🙄😖

[donnyrosart]

High levels of masking would probably correlate with being out in public, being with people not in your inner circle, etc. That's a stressor that non-masking people would be subject to as well.

[sarahsovereign]

Re: @53:00-56:00, self-determination, thank you for putting words to this! It's not a matter of a twenty-something learning to do "adulting", it's not a deep depression that precludes all action, or primadonna "I can't do that" behavior. 30 years ago I saw it in one of my professors. Brilliant human on so many levels. But it was worth it for him to use the proto-internet (that he probably helped to build) to special order Velcro shoes because maintaining and adjusting tied laces pulled a disproportionate amount of his own bandwidth. That energy was better spent in other ways, and I'm glad he did!

[susanbeever]

Yes, an autism peer support group, with professional help like the kids get.

[gregzeng]

This video lecture is extremely accurate on these effects of burnout, masking and term damage, affecting everything and everyone who is not accepted by the current mainstream culture.
Disadvantaged minorities were once left handers, slow learners, "wrong" religions, and"wrong" affiliations of most types.
The current DSM 5 and current ICD 11 will soon be shown to be wrong and "evil" on the latest versions of these legal standards. Our outstanding of autism spectrum disorders (ASD) will also evolve and change.
My father and myself both show ASD from both Traumatic Brain Injury (TBI) and complex PTSD. The causes and effects of our two DSM and ICD damages are very different on both father and son. When the next version of ASD might become the current "authority", ASD might understand that not only babies show ASD. ASD can be biochemically acquired on adult life by ordinarily healthy adults.

The burnout etc on this YouTube video will also supply to all ASD, whatever three cause of the ASD.

[isotope]

I wish there were a system of other ASD folks who were local that could help with cooking, shopping, etc because we "get it". When I'm NOT in burnout I'd love to help others.

Can we make an app? Like ubereats? To help connect people locally.

Because waiting for politicians to do anything... we're going to literally lose autistic people to more suicide waiting around for that!

[rebeckajarl]

This! I’m dealing with the tail end hopefully of autistic burnout. The fact that it is my fifth so far are the major reasons for me advocating for getting my ASD diagnosis, because if not this will probably be my life every 2-5 years. And I don’t know how many more I will survive even though I have a great support system in my family and friends. I’m about to start the process of getting my office diagnosis. On the topic of skills in the kitchen. When I’m not in a burnout I can cook even somewhat skilled in some areas. When I’m in a burnout, I almost need to be force fed to be able to eat. I can barely manage to go to the bathroom, in that state even if I normally could cook every dish in the world it wouldn’t help. I have a dishwasher and the only way I could have some thing to eat on was to use paper plates because even just using the dishwasher was to completed. When I’m not in a burnout, I can handle academic studies at a university level. In a burnout speaking full words much less sentences are to complicated. I really, really hope that you have managed to get further with the studies past covid. Thanks for the work you do! Autistic burnout is something you survive, and the thing you so far have put as possible help/ solution resonates with my experience.

[jenniferferris]

Idk if I'm experiencing burnout or severe CPTSD or both. Ive been masking all my life while fighting to suppress trauma. I'm barely able to stim to release anymore nothing I did or masked even work anymore. I've always felt like I've been operating on overload but now it's like stuff is frying, newest thing is painful to vocalize words

[patsygarcia]

Thank you so much I will share all your work w my son Patrick 26 with Autism. This is Soo helpful Awareness thanks from Mom

[krisannpino]

Very well done. Thank you so much for doing this study. I got married in May and due to increased demands on my home life, I’ve been in autistic burnout for several months. I recently reduced my work hours and have found it very helpful. I’m starting to recover some of my energy and executive functioning. I’m thankful my boss was accommodating.