"It's okay to talk about it": Navigating Mental Health & Autism
In recent years, our society has become more informed on understanding mental health conditions, identifying the issues that associate with them, and learning how we can provide support to those who need help. However, the intersection of neurodiversity and mental health contains some unique differences. Our world is not as “fluent” in how to identify when people on the autism spectrum are experiencing a mental health crisis; nor are we able to clearly identify how to provide support that is effective while at the same time being “neurodiverse-friendly”. Research has indicated that autistic adults may have a higher risk of suicide than the rest of the population*, making it a crucial conversation topic we need to keep enforcing. In Part 1, we will address a few red flags to watch for (that especially apply for neurodiverse individuals), and we will address a few possible barriers that can prevent those who are affected with mental health conditions from getting the help they need to improve their quality of life.
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[00:00:20.850]My eyes opened wide,
[00:00:22.530]and I found myself lying down on the bed in our hotel room.
[00:00:26.560]My husband, Dave, was lying down next to me.
[00:00:30.240]As soon as I raised my head up,
[00:00:32.450]Dave shifted his focus towards me
[00:00:34.970]as he approached closer to my side of the bed.
[00:00:38.840]I could tell it was dark outside,
[00:00:41.500]but I did not know what time or day it was.
[00:00:44.830]I sat up on the bed and felt the bandages on my arms
[00:00:48.610]sticking to my skin.
[00:00:50.850]I looked straight down
[00:00:52.680]and noticed a cluster of EKG stickers adhered to my chest.
[00:00:58.137]"It is not Wednesday anymore, is it," I asked out loud.
[00:01:03.727]"No," he responded.
[00:01:05.967]"It is Thursday evening around eight o'clock."
[00:01:09.910]It had been 22 hours
[00:01:11.950]since I could last recall my last memory.
[00:01:16.300]Dave had to fill me in on what happened.
[00:01:19.200]Around 10:30 p.m. the night before,
[00:01:22.660]a hotel security guard found me unresponsive
[00:01:25.930]near the hotel lobby and proceeded to call 911.
[00:01:30.310]They found my ID and located my hotel room number
[00:01:34.180]to call Dave,
[00:01:35.590]who immediately got up from bed and ran downstairs.
[00:01:39.940]The EMTs arrived promptly to the hotel.
[00:01:43.300]The police department also stopped by to investigate
[00:01:46.650]and rule out any potential foul play.
[00:01:49.690]15 minutes later, the police gave an all clear
[00:01:53.270]that no foul play was involved, and they left the scene.
[00:01:57.010]Meanwhile, the EMTs made two attempts
[00:01:59.860]to revive me with Narcan.
[00:02:01.970]When I remained unresponsive,
[00:02:04.230]they decided to transport me via ambulance
[00:02:07.190]to the nearest hospital.
[00:02:10.330]In the ER, the medical staff
[00:02:12.950]made a few additional attempts to revive me.
[00:02:15.920]They told Dave, "If she does not wake up,
[00:02:20.117]"we will have to transfer her to the ICU."
[00:02:24.130]Dave recalled to me later, as tears rolled down his face,
[00:02:28.847]"At one point, I was not sure
[00:02:31.647]"if you were going to make it through the night.
[00:02:34.687]"I thought you were slowly slipping away."
[00:02:38.900]Dave said that my eyes finally opened shortly before dawn.
[00:02:43.740]He described it as a miracle.
[00:02:46.600]I wished I remembered this miracle,
[00:02:49.610]but I have no memory of my entire stay at that hospital.
[00:02:54.810]13 hours after being admitted, I was released from the ER.
[00:03:03.060]It really surprised me to hear this story,
[00:03:07.320]but what astounded me more
[00:03:10.000]was that I was back inside our hotel room
[00:03:13.840]and that no one had detected
[00:03:16.940]that it wasn't an accident.
[00:03:35.950]and welcome to Let's Talk About Mental Health and Autism,
[00:03:41.930]My name is Lindsey Nebeker.
[00:03:43.560]I currently work as a development specialist
[00:03:45.660]for the Autism Society of America.
[00:03:48.210]In addition, I also do freelance work as a presenter
[00:03:51.010]and a speaker on topics specializing in autism
[00:03:53.690]and developmental disabilities.
[00:03:56.020]I am also a sibling to an autistic adult
[00:03:58.280]who is nonspeaking and has high support needs,
[00:04:01.110]and a lot of my advocacy work is focused
[00:04:03.600]on improving the quality of life for my brother
[00:04:06.060]and others who are similar to him.
[00:04:09.870]But before we continue, there are a few disclaimers.
[00:04:13.610]The information I am about to present below
[00:04:16.080]are options and views that belong solely to me
[00:04:19.920]and do not reflect the opinions of any agency organization
[00:04:23.260]unless otherwise stated.
[00:04:25.670]I am not a pro, (chuckles)
[00:04:27.800]and this information certainly
[00:04:30.150]does not constitute medical advice.
[00:04:32.870]For all your medical and psychiatric-related decisions,
[00:04:35.900]please consult your doctor.
[00:04:38.710]All images that are in this presentation
[00:04:41.510]are either photographed by me
[00:04:43.710]or they are Creative Common images
[00:04:45.490]that allow non-commercial use.
[00:04:48.020]All quotes and references from self-advocates
[00:04:51.150]are either published and made publicly available
[00:04:53.820]on print or on the internet,
[00:04:55.810]or if it was through a one-on-one interview,
[00:04:58.700]Gabe granted me permission to share the remarks.
[00:05:06.060]So, an overview of what we're gonna go through.
[00:05:09.640]First, we're gonna go through,
[00:05:11.620]what does the research currently tell us
[00:05:13.410]about mental health and autism?
[00:05:17.030]And then we'll move on to,
[00:05:18.670]what are the contributing risk factors,
[00:05:20.650]and why are red flags especially difficult
[00:05:22.970]to detect in autistic people?
[00:05:26.280]And then we will discuss,
[00:05:28.590]what are the five types of barriers
[00:05:30.560]we encounter in mental health and autism?
[00:05:37.440]In a relatively short time,
[00:05:39.350]mental health research on autism
[00:05:41.300]has become one of the top research priorities
[00:05:43.830]in our community.
[00:05:45.590]Over the past decade or so,
[00:05:47.470]research has provided us with a number of revelations.
[00:05:52.010]Between 20 and 37% of autistic adults
[00:05:55.420]have an anxiety condition,
[00:05:57.380]almost four times the rate among neurotypical adults.
[00:06:01.560]26 to 30% have depression or mood disorders.
[00:06:06.340]Two to 6% have attempted suicide in the past year,
[00:06:11.160]five times the rate of neurotypical adults.
[00:06:15.360]The National Patient Registry in Sweden
[00:06:18.850]found in a 2015 study
[00:06:21.770]that they are 10 times as likely to die by suicide
[00:06:26.430]as are those in the general population.
[00:06:29.030]Women with autism are particularly at risk
[00:06:31.800]for suicide attempts.
[00:06:34.120]In the neurotypical population,
[00:06:36.670]the average delay between symptom onset and treatment
[00:06:40.360]is 11 years.
[00:06:42.340]We can only imagine what that delay could be like
[00:06:45.370]for an autistic person experiencing signs of mental illness.
[00:06:50.750]These percentages will vary with each study,
[00:06:53.880]but there is one thing that is clear.
[00:06:57.450]Mental health is a serious issue in our community,
[00:07:01.740]and it cannot be ignored.
[00:07:04.350]It has been indicated that mental illness in general
[00:07:08.220]can and often does result
[00:07:10.250]from a combination of biological and environmental factors,
[00:07:14.730]but in trying to figure out the correlation
[00:07:16.560]between mental health and autism,
[00:07:19.070]one of the questions that has been raised
[00:07:21.660]is if these comorbid conditions,
[00:07:24.030]anxiety, depression, and even suicide,
[00:07:27.080]are things that come with being autistic.
[00:07:30.640]In 2018, a study at the University of Bristol
[00:07:33.690]concluded that these mental health comorbidities
[00:07:37.310]that autistic people experience do not appear at birth,
[00:07:41.250]but rather, they are a byproduct of negative experiences
[00:07:44.560]that occur during childhood and adolescence
[00:07:47.340]that lead to nonacceptance.
[00:07:50.090]This means treating mental illness in people on the spectrum
[00:07:54.880]should not at all involve
[00:07:56.250]a need to become more neurotypical,
[00:07:59.370]and yet we treat it like it should be.
[00:08:07.730]Like everyone else in the human race,
[00:08:10.490]possible risk factors are similar to what we all hear.
[00:08:14.070]A history of abuse, domestic violence, a history of trauma,
[00:08:18.720]significant events involving loss, and social isolation.
[00:08:23.750]But a pressure to conform,
[00:08:25.890]a lack of acceptance and appreciation,
[00:08:28.940]accusations of faking disability
[00:08:31.540]to take advantage of the system,
[00:08:33.810]and very few programs available
[00:08:35.980]to help autistic people fulfill successful relationships,
[00:08:39.130]employment, and independence, raise these risks.
[00:08:43.530]An autistic person's tendency
[00:08:45.250]to have inflexible and repetitive thought processing
[00:08:48.630]could also contribute to these risks.
[00:08:51.430]It is obviously clear that so many of us on the spectrum
[00:08:55.000]experience comorbid mental health conditions,
[00:08:58.510]but why is it still so hard to detect the red flags?
[00:09:07.210]One thing that makes it difficult to detect
[00:09:10.190]is masking or camouflaging,
[00:09:13.270]an attempt to suppress our autistic characteristics
[00:09:15.800]and traits in order to fit in.
[00:09:18.300]We learn this by utilizing social scripts
[00:09:21.040]and mimicking our peers.
[00:09:22.740]We camouflage as an attempt to connect with people.
[00:09:26.720]It's a skill that I had personally acquired at a very young
[00:09:30.600]and had become way too good at.
[00:09:33.550]Even the people closest in my life
[00:09:35.470]may not be able to detect it.
[00:09:38.050]And unfortunately, those kinds of situations,
[00:09:41.400]that can lead up to built-up trauma if not detected on time.
[00:09:49.060]Alexithymia is a personality construct that involves
[00:09:52.640]difficulty in identifying or describing emotions
[00:09:55.610]and distinguishing these emotions
[00:09:57.660]from what the body is actually experiencing.
[00:10:00.400]It hinders the ability to understand
[00:10:02.320]one's own experience with self-awareness.
[00:10:05.630]Signs of one emotion could get confused with another.
[00:10:09.080]We might be able to tell we are experiencing an emotion,
[00:10:12.900]but we just don't know which one.
[00:10:15.950]While it can originate from episodes of PTSD,
[00:10:19.830]alexithymia is also a construct
[00:10:22.360]that may very well be innate in autism.
[00:10:26.500]It is strongly connected to interoception,
[00:10:30.500]a sense that helps identify and understand
[00:10:33.280]what is going on inside our body,
[00:10:35.700]like recognizing when we are hungry or full
[00:10:39.010]or when our bladder is full,
[00:10:41.140]and a lot of people on the spectrum
[00:10:43.450]struggle with interoception,
[00:10:46.170]and we have to invest tons of effort
[00:10:48.530]on establishing interoceptive awareness.
[00:10:52.550]Same thing with emotions.
[00:10:54.380]We often have to learn to identify
[00:10:57.290]what emotion we are actually experiencing
[00:10:59.640]based on what is going on inside our body.
[00:11:03.750]When I first learned of this term,
[00:11:06.240]I thought it was speaking directly to me.
[00:11:08.740]For my entire life, I had struggled to explain
[00:11:13.040]what my struggle with describing certain emotions,
[00:11:16.640]and now there's finally a word I can put to it.
[00:11:21.080]Our translation of self-injury is not always accurate.
[00:11:25.810]Self-injury is primarily an indicator
[00:11:29.110]that one is experiencing pain,
[00:11:31.970]but is it related to acute physical pain,
[00:11:34.990]or is it a response to psychological pain?
[00:11:38.210]It can be difficult to tell.
[00:11:40.500]While in all cases it is a serious issue
[00:11:43.970]that needs to be addressed,
[00:11:46.010]knowing where it is coming from is crucial
[00:11:48.950]to how we can best support a person who is hurting themself.
[00:11:54.340]And for autistics especially,
[00:11:56.760]indicators of a mental health crisis
[00:11:59.560]can be easily dismissed as part of the autism.
[00:12:05.240]Clinicians only see the things we are paying attention to
[00:12:09.320]or want to pay attention to.
[00:12:11.540]For decades, we didn't even consider the idea
[00:12:14.630]that people on the spectrum have complex emotions
[00:12:17.250]and fixated thoughts that could lead to depression
[00:12:19.990]and suicidal tendencies,
[00:12:23.380]but it can even be something we dismiss in ourselves.
[00:12:27.310]Erin Clemens, a woman who was diagnosed
[00:12:30.090]with both autism and depression, wrote,
[00:12:33.947]"It's really difficult to separate the symptoms.
[00:12:37.407]"It can be hard to tell whether my inability to do work
[00:12:40.787]"is coming from being overstimulated due to the autism
[00:12:44.697]"or if it's the start of the new wave of depression."
[00:12:50.270]All of these factors listed here
[00:12:52.590]make it more difficult for doctors
[00:12:54.700]to perform screenings for depression and suicide.
[00:13:03.350]When kids and adults on the autism spectrum
[00:13:05.720]experience comorbid mental health conditions of any kind,
[00:13:10.080]we face barriers that are additions
[00:13:12.860]to the barriers that our neurotypical population
[00:13:16.020]already face in their journeys.
[00:13:18.700]In order for us to more easily identify the red flags
[00:13:22.750]and provide support most effectively,
[00:13:25.720]we need to identify what those particular barriers are.
[00:13:30.450]With a combination of extended research
[00:13:32.780]into other personal accounts,
[00:13:34.610]as well as my own personal experience,
[00:13:37.500]I have come up with five types of barriers.
[00:13:44.020]The first type of barrier we encounter is communication.
[00:13:52.770]How do we communicate?
[00:13:55.130]There are a variety of ways we can communicate.
[00:13:58.690]Through spoken word, through writing,
[00:14:02.460]through technology like typing and AAC systems,
[00:14:06.800]through PECS, through sign language, through behavior,
[00:14:11.260]or some or all of the above.
[00:14:15.100]Because of the variety of ways we communicate,
[00:14:18.370]our methods of asking for help can be easily missed,
[00:14:22.020]especially when those around us
[00:14:23.590]are not fluent with our communication style.
[00:14:27.170]Even when we do have access
[00:14:28.930]to the most used communication methods,
[00:14:31.920]we still encounter issues when figuring out
[00:14:34.320]if and when to ask for help.
[00:14:37.000]For one thing,
[00:14:38.500]we're not very good at unprompted conversations,
[00:14:42.160]yet our society expects us to not need those prompts.
[00:14:46.680]A person will say to us just one time
[00:14:49.410]that we are welcome to reach out to them
[00:14:51.820]if we need anything,
[00:14:53.560]and if they don't hear from us,
[00:14:55.210]they just assume we are experiencing no issues at all.
[00:14:59.380]One of the reasons I personally think it had taken so long
[00:15:03.090]for the people around me to recognize
[00:15:05.090]how serious my issues had become
[00:15:08.160]is that I just assumed that they just knew.
[00:15:12.010]I assumed that people could see right through my mind
[00:15:15.680]and the clues that I leaked was more than enough information
[00:15:19.410]for others to know exactly what was going on.
[00:15:22.460]I thought that my episodes of outburst and self-injury
[00:15:26.510]would not be swept under the rug as part of the autism.
[00:15:31.550]We can be afraid to communicate to others about our issues.
[00:15:36.390]We fear losing any independence we may already have.
[00:15:40.190]We fear that we may be perceived as weak.
[00:15:44.030]We fear that we will be accused of seeking attention.
[00:15:48.360]We may have had bad past experiences
[00:15:50.970]when reaching out for help,
[00:15:53.290]or sometimes, we simply do not know who to ask, how to ask,
[00:15:58.480]or what to particularly ask for.
[00:16:01.460]And eventually, we learn that what you say to us
[00:16:06.040]cannot be taken literally.
[00:16:09.010]We know you mean well when you say,
[00:16:11.987]"If you need to talk, I am always here,"
[00:16:14.960]or, "Please call me any time,"
[00:16:19.090]like the popular Reddit forum Ask Me Anything.
[00:16:23.760]We used to take your word, but as we grow,
[00:16:27.570]we have learned that you literally don't mean this.
[00:16:32.690]I would assume you have occasions
[00:16:34.590]when you need your privacy,
[00:16:36.610]and of course, those are not times
[00:16:38.560]when you want anyone else to barge in or intrude.
[00:16:43.410]This abstract style of communication
[00:16:45.850]makes it complicated for us.
[00:16:48.140]When we realize that a person is not always there,
[00:16:53.180]we stop reaching out because we no longer believe in anyone
[00:16:58.630]who tells us they will be there when we need support.
[00:17:06.770]The second type of barrier we encounter
[00:17:10.650]is crisis supports and response.
[00:17:16.970]How do we define a mental health crisis?
[00:17:20.600]A mental health crisis occurs
[00:17:23.160]when there are insufficient interventions and supports
[00:17:26.630]that are immediately available
[00:17:28.410]to get through an acute psychiatric need
[00:17:30.970]and help an individual cope when it happens,
[00:17:34.950]whether that be a team of trained professionals
[00:17:38.210]or people you are surrounded by in your everyday life.
[00:17:47.320]With the rise of technology over the years,
[00:17:51.240]crisis lines have become more accessible.
[00:17:54.940]The major ones now include text, chat, and mobile apps
[00:17:59.030]in addition to the phone calls.
[00:18:01.720]That certainly does help, for sure,
[00:18:04.540]but what about those of us who use AAC
[00:18:07.830]and require more time to communicate?
[00:18:10.870]What about those of us
[00:18:12.510]who only communicate through behavior?
[00:18:15.610]What about those of us, even if we do speak or write
[00:18:19.750]within a socially accepted time frame,
[00:18:22.810]have alexithymia and extreme difficulty
[00:18:26.160]coming up with the language
[00:18:27.840]to provide specifics on how we need help?
[00:18:31.750]This can be tricky when the receiver
[00:18:33.510]on the other end of the chatroom or phone line
[00:18:36.340]expects us to have the capability
[00:18:38.430]to explain the specific details behind our emotions
[00:18:42.280]and expects appropriately timed responses
[00:18:45.560]to simple questions.
[00:18:49.410]In her blog, Corina Becker,
[00:18:52.700]a neurodiversity activist and web comic artist,
[00:18:55.700]writes, "When someone goes through crisis mode,
[00:19:00.217]"they also go into survival mode,
[00:19:02.957]"a state where someone purposefully
[00:19:05.057]"or subconsciously shuts down skills in order to cope.
[00:19:09.767]"This is dangerous because now
[00:19:12.147]"the person has further difficulty
[00:19:14.037]"in accessing community help and services,
[00:19:18.627]"and is more vulnerable to future further crisis,
[00:19:23.187]"including escalation into self-harm coping strategies."
[00:19:31.711]In 2016, 24-year-old Kayden Clarke
[00:19:36.720]was shot and killed inside his home by police officers
[00:19:41.110]after they received multiple calls
[00:19:43.010]that he was expressing suicidal behavior,
[00:19:46.100]stating that the reason for shooting
[00:19:48.560]was that he was heading towards them while holding a knife.
[00:19:52.840]What makes this story especially sad
[00:19:56.170]is that less than a year prior,
[00:19:58.180]Kayden, who was previously known as Danielle,
[00:20:01.910]had openly shared a video that went viral
[00:20:05.240]of his dog comforting him
[00:20:07.320]while he was experiencing a meltdown and hitting himself.
[00:20:11.010]He wanted to share with the world
[00:20:12.900]that vulnerable moment with his dog
[00:20:15.770]in an effort to shed a light
[00:20:17.340]on the struggles that people on the spectrum can face.
[00:20:22.640]Sadly, there are many more heartbreaking circumstances
[00:20:26.470]like what happened to Kayden,
[00:20:28.450]and it is clear that
[00:20:29.640]while there are some law enforcement teams
[00:20:32.170]who have received excellent training
[00:20:33.970]in interacting with people with autism
[00:20:36.390]and people with crisis,
[00:20:38.630]there are plenty of other teams
[00:20:40.870]who have not received that training.
[00:20:46.640]The sound of the sirens, the commotion in the hallways,
[00:20:50.660]the bright flickering tube lights,
[00:20:53.080]the cold air inside an exam room,
[00:20:56.240]the fragrances of body odor, dried blood, urine, and vomit,
[00:21:02.360]all of this can be a living nightmare.
[00:21:07.250]But it's not just limited to the physical space,
[00:21:10.310]but how we are treated once we are admitted.
[00:21:14.220]When we factor in the other things we might be subject to,
[00:21:18.700]being hooked to IVs, getting our stomachs pumped,
[00:21:22.820]rape kits, feeding tubes, interrogative style questioning,
[00:21:27.790]and, as a last resort, restraints,
[00:21:31.770]it can make our ability to regulate even worse.
[00:21:35.770]If it is not immediately recognized,
[00:21:38.590]we are left with the choice
[00:21:40.320]of what impact it will have in our care
[00:21:43.640]if we disclose we are autistic.
[00:21:46.600]On one hand, our crisis team may have a better understanding
[00:21:51.030]of our communication differences
[00:21:53.250]and know how to better approach our situation.
[00:21:56.390]On the other hand,
[00:21:58.310]we might be subject to infantile treatment and pity.
[00:22:03.270]A significant issue that can come up in these places
[00:22:06.280]is access to communication.
[00:22:08.826]AAC systems are not typically available,
[00:22:12.460]and a support person might not be with you
[00:22:15.210]if you rely on one to help you communicate.
[00:22:18.490]This gets messy when interventions
[00:22:20.500]tend to be verbally based,
[00:22:23.610]and if clinicians are not familiar with autism
[00:22:26.260]or have adequate training on autism,
[00:22:29.470]it can lead to misinterpretations of meltdowns,
[00:22:32.800]not recognizing that frequent fidgeting, echolalia,
[00:22:36.770]rocking, screaming, and self-injury
[00:22:39.990]might actually be indicators
[00:22:42.100]that they had just experienced a trauma.
[00:22:47.270]Maxfield Sparrow knows this experience all too well.
[00:22:51.810]In a piece he wrote about mental health services, he asks,
[00:22:57.427]"What was the point of putting someone on that table
[00:23:00.907]"who didn't know how to talk to anxious people
[00:23:03.877]"and didn't know how to educate a mental healthcare consumer
[00:23:07.067]"about their options without being trustful and triggering?
[00:23:11.377]"How many anxious people are not getting helped
[00:23:14.697]"because access to services is blocked
[00:23:17.627]"by the lack of accommodation for the very issue
[00:23:20.707]"that brings them seeking services in the first place?"
[00:23:26.850]Autistic patients who do go to the ER or a crisis center
[00:23:32.410]do not always get to go back home.
[00:23:35.620]At times, they end up in boarding situations
[00:23:39.700]for up to two weeks or more.
[00:23:46.070]And that takes us to barrier type three,
[00:23:51.320]recovery and treatment.
[00:23:54.280]There are four subtypes within this particular barrier.
[00:23:59.770]Access to providers,
[00:24:02.550]access to healthcare and resources,
[00:24:07.020]access to environment and space,
[00:24:10.500]and access to experienced professional care.
[00:24:17.540]Availability of good providers
[00:24:19.890]who treat mental health in general
[00:24:22.960]can be difficult to find,
[00:24:25.230]especially if you do not live in a large city
[00:24:27.490]like New York, Boston, or San Francisco.
[00:24:33.360]This is a map of the continental U.S.
[00:24:35.820]That charts active child adolescent psychiatrists
[00:24:39.130]who were active in 2015.
[00:24:42.060]The areas marked in red indicate a severe shortage,
[00:24:45.760]between one and seven psychiatrists per 100,000 children.
[00:24:51.730]While I could not find a map for 2020,
[00:24:55.210]I did find some numbers.
[00:24:58.010]As of 2020, in Colorado,
[00:25:01.630]there are 15 child adolescent psychiatrists
[00:25:04.430]per 100,000 kids under the age of 18.
[00:25:08.330]In Kansas, there are nine child adolescent psychiatrists
[00:25:12.913]per 100,000 kids under the age of 18.
[00:25:16.736]And in Nebraska,
[00:25:18.328]there are nine child adolescent psychiatrists
[00:25:20.523]per 100,000 kids under the age of 18.
[00:25:25.140]Let's keep in mind
[00:25:26.580]that this does not include adult psychiatrists,
[00:25:30.490]and this does not include providers
[00:25:32.660]who specialize in autism.
[00:25:39.040]During my 13-year battle with anorexia and EDNOS,
[00:25:43.660]I did outpatient treatment twice.
[00:25:46.560]At the time, none of it was covered by health insurance.
[00:25:51.420]During my first outpatient round,
[00:25:55.230]I had taken a medical leave of absence from college
[00:25:58.800]to focus on my recovery.
[00:26:02.590]At the same time, I took on a full-time job,
[00:26:06.670]and part of my earnings
[00:26:08.410]went towards my lifesaving treatment.
[00:26:13.880]Access to resources is especially challenging
[00:26:17.320]for those who are not privileged.
[00:26:19.580]When I say privileged, I am referring to factors like race,
[00:26:24.120]cultural identity, gender identity, and income.
[00:26:28.950]The more marginalized we are,
[00:26:31.370]the harder it would be to secure the mental health supports
[00:26:34.460]that are desperately needed.
[00:26:37.600]Many experienced mental health providers
[00:26:40.350]do not take insurance,
[00:26:42.280]and those who do take insurance,
[00:26:44.870]it's tricky to find a provider
[00:26:46.070]who's really good at what they do.
[00:26:48.730]For those of you who have been fortunate
[00:26:50.580]to locate the perfect team of mental health providers
[00:26:53.130]who do accept your insurance, consider yourself lucky.
[00:26:58.460]In the U.S.,
[00:26:59.900]the best homelike residential treatment programs
[00:27:03.090]for alcohol and drug addiction,
[00:27:05.280]eating disorders, and mental health
[00:27:07.760]tend to be the most difficult
[00:27:09.280]to find health insurance coverage.
[00:27:12.170]Most of us just don't have the luxury to afford
[00:27:15.180]between 6,000 and $20,000 a month
[00:27:19.110]or to carry a debt from financing plans.
[00:27:23.500]And in case when health insurance does provide coverage,
[00:27:28.410]it is far lower limited than the average length of time
[00:27:32.140]a person needs to be in residential treatment.
[00:27:38.720]When we say environment and space,
[00:27:41.710]we are referring to the space
[00:27:43.300]where extended recovery is taking place.
[00:27:46.510]This can be an ER, a psychiatric hospital,
[00:27:50.550]a residential treatment center, CSUs,
[00:27:54.140]observation centers, or in-home respite care.
[00:27:58.690]As of 2017, there were only nine facilities in the country
[00:28:04.710]that can specifically support autistics
[00:28:07.100]in mental health crises.
[00:28:09.380]So, unless we are lucky to have access to one of these,
[00:28:13.260]we rely on the psychiatric units
[00:28:15.410]that have general admissions.
[00:28:17.830]Some are fantastic and some are dreadful,
[00:28:22.180]but all could use improvement.
[00:28:25.920]I have yet to be admitted to a psychiatric hospital,
[00:28:30.120]but I have made visits to friends who were there,
[00:28:34.110]and I spent three years at a boarding school
[00:28:37.560]which kind of resembled those hospitals I visited.
[00:28:41.480]The school I went to was, of course,
[00:28:43.690]not categorized as such,
[00:28:45.270]but with the number of teenagers who had been sent there
[00:28:49.730]for substance issues and criminal behavior...
[00:28:53.660]One had stolen a van and initiated a police chase.
[00:28:56.880]Another had opened fire on the street of his hometown.
[00:29:00.840]The appearance of the dorms,
[00:29:02.460]the strict rules we had to follow,
[00:29:04.610]and the limitations of our freedoms
[00:29:06.580]certainly resembled the hospitals that I have visited.
[00:29:11.450]Plenty of people who do experience mental illness
[00:29:15.200]have relied on residential treatment centers
[00:29:17.460]to save their life,
[00:29:19.270]and if done right, residential treatment centers
[00:29:22.910]are a great starting point for recovery
[00:29:25.410]if one does not succeed in outpatient treatment.
[00:29:29.200]But for autistic patients, if not handled in the right way,
[00:29:33.480]it can result in leaving them more traumatized
[00:29:36.400]than they were before they entered into treatment.
[00:29:40.270]These places can be uncertain and unpredictable.
[00:29:43.990]There can be a lot of sensory violations in these spaces
[00:29:47.520]that we are unable to control.
[00:29:49.620]The lights, the smell, the sounds, the temperature.
[00:29:54.400]We tend to take in the emotions
[00:29:56.460]that other people around us are experiencing.
[00:29:59.720]So, if we are residing together
[00:30:01.860]with other people who are experiencing negative emotions,
[00:30:06.400]it can affect us physically and psychologically,
[00:30:09.660]causing a delay to our own recovery.
[00:30:12.960]Sharing a room is anxiety provoking,
[00:30:16.380]and being restricted from adequate amounts of privacy
[00:30:19.470]and solitude that people with autism need to recharge
[00:30:23.680]can be extremely detrimental.
[00:30:26.960]Think about it.
[00:30:28.990]Is this the kind of place
[00:30:30.420]you would want to come home to every day?
[00:30:34.930]We say that having mental illness is not a crime.
[00:30:40.420]So, why are most hospitals and centers
[00:30:43.600]built like spaces for punishment?
[00:30:47.250]Why are most hospitals and centers
[00:30:50.310]not built like they should be,
[00:30:53.470]a safe retreat for healing?
[00:31:00.220]Years ago, during a consultation with a psychiatrist
[00:31:04.120]to address uncontrollable suicidal thoughts,
[00:31:07.480]I made a decision to disclose my autism diagnosis.
[00:31:11.500]To my surprise, he responded along the lines of,
[00:31:17.157]"It appears that you have now outgrown it."
[00:31:20.910]Remarkably, there are plenty of mental health professionals
[00:31:26.680]who tend to have preconceived notions
[00:31:29.710]that autism is perceived as a disease
[00:31:33.630]or a problem that needs to be solved
[00:31:35.980]and just can't simply disappear as we age.
[00:31:40.800]It can be tricky to find experienced psychotherapists
[00:31:44.470]who not only has a familiarity with autism,
[00:31:47.490]but at the very least,
[00:31:49.060]understand that autism and mental illness are separate.
[00:31:54.800]A therapist who does not appreciate or understand autism
[00:31:58.800]can greatly misinterpret our behavior and our words.
[00:32:03.040]They might censor what they say
[00:32:06.410]as if we are incapable of engaging in
[00:32:09.700]or understanding activities adults engage in.
[00:32:15.450]They may force eye contact,
[00:32:17.780]believing that this is a requirement in successful therapy.
[00:32:22.530]They can invalidate our autism diagnosis
[00:32:26.150]or issue a misdiagnosis.
[00:32:29.160]They do not understand
[00:32:31.600]why they have to give us a fair amount of heads up
[00:32:35.070]if they need to reschedule an appointment
[00:32:37.320]or if they will be leaving their practice,
[00:32:40.700]and so much more.
[00:32:43.370]For psychiatric providers who do have experience in autism,
[00:32:47.690]they might hesitate to refer their patients
[00:32:50.490]to crucial crisis supports like law enforcement and ERs,
[00:32:54.740]according to one study,
[00:32:56.950]because they fear that their patients
[00:32:59.060]might receive potential mistreatment.
[00:33:02.280]It's really interesting,
[00:33:04.410]but sadly, it does not surprise me.
[00:33:09.020]When you factor in these four subtypes,
[00:33:12.010]finding the right provider,
[00:33:14.130]finding any provider,
[00:33:16.340]and securing affordable mental health treatment
[00:33:19.600]requires an extreme amount of energy,
[00:33:22.970]and if we are unable to find
[00:33:24.600]one who understands neurodiversity,
[00:33:27.560]or at least is willing to learn about neurodiversity,
[00:33:31.540]it's easy to just give up.
[00:33:40.500]Barrier type four is ignorance and stigma.
[00:33:47.350]Even with the abundance of information
[00:33:49.390]we now have on autism,
[00:33:51.730]there is still a lot of bias
[00:33:53.980]and misunderstanding that exists,
[00:33:56.550]even within the autism community.
[00:33:59.630]According to a 2012 study
[00:34:02.190]published in the Research in Developmental Disabilities,
[00:34:05.670]this can even include professionals
[00:34:07.680]who work with youth and adults on the spectrum.
[00:34:11.330]All of this enforces a negative narrative.
[00:34:18.650]The specific kind of ignorance that we are dealing with
[00:34:23.950]is lack of knowledge in mental health
[00:34:27.770]and a lack of knowledge in autism,
[00:34:33.410]and that lack of knowledge
[00:34:35.360]can produce the following stigmas.
[00:34:51.410]discrimination in our schools, in our workplaces,
[00:34:55.240]in everyday interactions with the world around us,
[00:34:59.810]labeling, particularly function labeling,
[00:35:04.170]something I know far too well based on myself and my brother
[00:35:09.270]presenting the condition very differently;
[00:35:15.780]An online comment that says, "Go kill yourself,"
[00:35:20.870]is something autistics can take literally.
[00:35:27.160]And media misrepresentation.
[00:35:31.540]While the media has been making efforts
[00:35:33.910]to humanize disability,
[00:35:36.190]the negative narrative it historically has used
[00:35:39.120]continues to linger.
[00:35:41.400]An interview that airs with a mention that a mass shooter
[00:35:44.830]happened to have an autism diagnosis
[00:35:47.590]results in an audience spreading lies and prejudice.
[00:35:51.410]We know that people with developmental disabilities
[00:35:54.390]are far more likely to be recipients of crime
[00:35:58.500]than perpetrators of crime,
[00:36:00.690]but that has not stopped the impact
[00:36:02.720]that the media has had on the myth
[00:36:04.700]that our society continues to believe in.
[00:36:10.900]If all of this were happening to you,
[00:36:14.750]how would this affect your quality of life?
[00:36:18.690]For those of us on the spectrum
[00:36:21.100]who have to confront that ignorance
[00:36:22.890]and stigma nearly every day,
[00:36:26.670]it can easily lead us to feeling like
[00:36:30.960]that we are invalidated,
[00:36:34.170]that we don't belong,
[00:36:37.220]that we are not wanted,
[00:36:40.450]and that we are a burden,
[00:36:44.490]which reinforces a poor quality of life.
[00:36:49.070]In her presentation at the 2017 Love & Autism conference,
[00:36:54.180]Kassiane Sibley reflects on the following.
[00:36:58.077]"Yesterday, I sat in front of my computer for several hours
[00:37:02.607]"watching you have a discussion about people like me.
[00:37:07.287]"For hours and hours,
[00:37:09.527]"I watched you talk about people like me
[00:37:12.627]"as though we cannot hear you calling us an emergency,
[00:37:15.987]"a crisis, a burden, a tsunami,
[00:37:19.747]"hopeless, an unfortunate situation,
[00:37:29.690]All of that I can personally relate to,
[00:37:33.620]which certainly has not helped me on my own journey,
[00:37:38.140]but what especially did not help me
[00:37:41.320]was the last barrier I am about to reveal to you now,
[00:37:48.520]the barrier that arguably
[00:37:50.780]might be the toughest one to transcend,
[00:37:54.470]and that barrier is you.
[00:37:59.820]The world that we experience is intensely packed.
[00:38:03.840]There is so much to process.
[00:38:06.660]There is so much to take in.
[00:38:09.520]In recent decades, as the rise of communications
[00:38:13.020]and social media dominates our planet,
[00:38:16.520]life has become that much more intense.
[00:38:19.780]There is no pause button.
[00:38:22.980]While all of that is conspiring,
[00:38:25.890]it gets too easy for you to forget to check on you.
[00:38:32.460]You forget how to tell if you are really okay.
[00:38:40.030]You need to ask yourself, what is blocking you?
[00:38:47.250]Autistic burnout is a real thing,
[00:38:50.470]and oftentimes, if you have not established
[00:38:54.120]what your boundaries are,
[00:38:56.250]you don't realize it is happening
[00:38:58.340]until it really gets out of control.
[00:39:01.430]A tremendous amount of energy is required out of you
[00:39:04.640]to socially interact with the world around you.
[00:39:07.630]Your performance has involved
[00:39:09.560]hours of practice conversations,
[00:39:12.700]rehearsing body language in front of the mirror,
[00:39:15.660]and quietly observing other people's interactions.
[00:39:19.920]You forget to take care of yourself,
[00:39:22.820]and now, you are no longer able to keep it together.
[00:39:27.590]Your stims become far more apparent.
[00:39:30.450]You struggle more than ever to speak or write.
[00:39:34.010]You forget your coping skills.
[00:39:36.520]You lose your capacity to manage,
[00:39:39.830]and you have become exhausted.
[00:39:45.300]And yet, you are scared to reach out.
[00:39:51.080]Are you scared of becoming more vulnerable?
[00:39:54.980]Are you too stubborn to admit that just like all humans,
[00:39:59.420]you rely on the dependence of others?
[00:40:03.020]Have you experienced so much failure in your life already
[00:40:07.680]that you have convinced yourself
[00:40:09.570]that you are not worth any value?
[00:40:13.130]Have you stopped believing
[00:40:15.450]you deserve to be nurtured and loved?
[00:40:20.350]Do you know what is blocking you?
[00:40:29.860]There are so many useful things that I found
[00:40:33.380]in my own research and on the internet
[00:40:35.530]that I could not fit in one page here.
[00:40:37.990]So, I created a shared Google spreadsheet
[00:40:41.070]that houses a neurodiversity
[00:40:43.670]and mental health resource database.
[00:40:46.820]This is just a screenshot of just a portion of the sheet.
[00:40:51.010]And on that spreadsheet, you can find articles, videos,
[00:40:54.910]published research, links to PDF downloads,
[00:40:58.210]personal stories, organizations,
[00:41:00.720]and more on mental health and autism.
[00:41:05.210]On the second tab, there is a list of crisis lifelines
[00:41:08.760]and ways you can contact each one.
[00:41:11.740]We will provide you with the link to the spreadsheet
[00:41:13.840]after the conclusion of this webinar,
[00:41:16.460]and once you do receive it,
[00:41:18.520]please feel free to share this resource
[00:41:20.390]with anyone who you believe would find it useful.
[00:41:41.660]Dave and I found ourselves looking directly at each other
[00:41:46.730]while we were sitting face to face
[00:41:48.520]during a couples therapy session,
[00:41:51.180]exchanging a dialogue about the event
[00:41:53.400]that had occurred a week prior.
[00:41:56.577]"It is concerning how two prescription tablets
[00:42:00.087]"and a few drinks can be so dangerous," Dave said.
[00:42:04.717]"Hopefully, you have learned through this experience
[00:42:07.707]"that you need to be more careful."
[00:42:11.720]I paused and gave a squinted look of disbelief
[00:42:15.550]that Dave had not picked up the message.
[00:42:19.410]With tightness developing in my throat,
[00:42:22.360]I looked straight into his eyes, and I uttered,
[00:42:26.647]"I took more than two."
[00:42:30.047]"You took more than two?
[00:42:32.867]"Did you take three?"
[00:42:36.010]I continued to stare at him in silence.
[00:42:40.277]"Did you take four?"
[00:42:44.390]Obviously, our therapist had picked it up
[00:42:47.300]well before Dave did.
[00:42:50.440]So, she turned to me, and she calmly asked,
[00:42:55.497]"Lindsey, were you feeling suicidal on that day?"
[00:43:02.420]I closed my eyes and cupped my mouth with my hands.
[00:43:07.350]A sharp wave of emotion engulfed my throat,
[00:43:10.450]and a fresh round of tears trickled down my face.
[00:43:15.457]"Honey, was that a suicide attempt,"
[00:43:19.420]Dave asked as he straightened up in his chair.
[00:43:23.300]The plan I had been keeping inside for three months
[00:43:27.180]was finally out.
[00:43:29.280]The secret behind what really happened
[00:43:32.150]while I had locked myself inside that bathroom
[00:43:34.720]near the hotel lobby that night,
[00:43:37.400]that moment when I looked at myself
[00:43:40.060]one last time in the mirror,
[00:43:42.220]threw myself down on the tile floor,
[00:43:45.050]opened my messenger bag,
[00:43:47.320]shoved all of my supply
[00:43:48.890]of prescription pills down my throat,
[00:43:51.620]and washed it down with two additional shots of vodka.
[00:43:55.880]Six minutes was all it took for me to collapse,
[00:44:00.790]and a half hour later was when I was found unresponsive
[00:44:04.940]by the hotel security guard.
[00:44:07.850]And all that time, everyone had thought it was an accident.
[00:44:16.417]"Don't you get it, Dave," I screamed uncontrollably.
[00:44:22.230]My body abruptly shivered as I let out a gasp.
[00:44:25.620]I started to collapse to the floor,
[00:44:27.870]sparing my fall by the tight grip of my hands
[00:44:30.740]hanging onto the arm of my chair,
[00:44:33.080]burying my face inside.
[00:44:36.537]"She is shaking,"
[00:44:38.900]I heard Dave saying quietly in the background.
[00:44:43.100]I am speechless.
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