Wednesday, August 14, 2019

Independent living on the autism spectrum

One of the top concerns facing autistic adults and their families is the thought of leaving the nest and living in their own place.    Independent living is a crucial marker of adulthood.  However when you have autism or any disability,  this task becomes very complex as there are a lot of variables that you have to consider.   Things like housing, supports needed as well as what daily living skills that the person will need to learn.   Living on one's own requires a lot of planning on the part of the individual and their family.   As for my situation, I still live at home with my parents.  However in the future, I want to live on my own someday but know that it's going to require a lot of planning and that living completely independently without supports would result in a less than desirable situation.  It is with this post that I will talk about some the things to consider if you or your family member is considering moving into their own place.

The first step when planning to move into your own place is finding affordable housing.  Like everywhere else across the country,the housing crisis makes it hard for people with developmental disabilities to reside in their own homes in the community..  Of course, there are Section 8 housing vouchers that can help those with autism and other disabilities find affordable housing.  However, there is a waiting list  and the availability of subsidized housing is far and few in between.  Plus, not everyone will meet the financial requirement to qualify for such housing.    Finding a place that is affordable and doesn't eat all of my paycheck should be a priority. I also want a place that is in a decent neighborhood with a relatively low crime rate.  However since the price of housing and rent is soaring high all over the place, it is hard to find a house, town home or an apartment in a modest neighborhood.   Given all these challenges, we need to focus on the housing issue if we want those with autism (as well as those with other disabilities) to be able to live and participate in the community.

Perhaps my biggest concern about the prospect of living on my own is arranging for supports to assist me with daily living.  In anticipating this future transition, my executive functioning difficulties in managing everyday tasks like (cooking, budgeting etc.)and also dealing with change (I am still adjusting to living in Washington state) are some of the areas I will need assistance with.  I will need someone to act as a coach and provide emotional support. The hardest part is figuring out supports/services as well as finding the right people for the job. The good news is there are many different ways to arranging for support or care needs.  Perhaps a roommate can help out or support workers (either from an agency or individual providers) that can come in and assist with daily living skills, errands/appointment as well as social/recreational activities.    Another creative idea, is having caregivers that double up as roommates.  This type of arrangement involves a roommate who receives free rent or receives paycheck in exchange for providing  needed supports and services.  Of course deciding which support arrangement will work best depends if an individual qualifies for state services or if they have enough money to pay for support workers privately as well as the availability of natural supports. 

A third variable is measuring adaptive skills or living skills a person possesses.  This means taking an inventory of skills the person already knows, skills the person will need to learn as well as tasks the individual will need help with.   This can be done either through a person center planning meeting or a formal adaptive living skills assessment.  The amount of living skills the individual already possesses and has the ability to learn will vary.  Of course parents can help their loved one prepare and help master some living skills.  Measuring daily living skills can help figure out what assistance he/she will need once they move out.

I believe independent living is possible for those with autism and other developmental conditions.  There is just some extra planning and research that will need to take place.  It is something to consider long term since living with family is not a permanent solution since parents/caregivers will eventually grow old to care for their adult offspring.   I am aware that some families have chosen group homes or intentional communities for their loved ones.  However, this post is mainly addressed to those families or individuals who want to live in the community.  Autistic people deserve to have the same opportunities as those adults without disabilities.



Image result for person washing dishes

Friday, August 2, 2019

Early vs. Late diagnosis

.  Being in the self advocacy realm for quite sometime, I've noticed that there are  quite a number of self advocates who got their autism diagnosis later in life (e.g. adulthood).     As someone who was diagnosed with autism in early childhood, I just realized how lucky I am but also sad that a vast majority autistic self advocates went without help for so long .  While I do have some things in common with the late diagnosed group, there are some differences just because of the fact that I received an early diagnosis.  It is with this post that I will explore some of these differences.

Being diagnosed early in life gave me access to services and therapies to help me navigate my environment.  Unlike a lot of late diagnosed autistics, I didn't spend most of my school years unsupported. My autistic traits weren't mistaken for "laziness" or "noncompliance" by teachers and other school staff.  I had an IEP which helped those who worked with me as well as my general education teachers understand my disability and how to help me.  In this sense I was privileged to learn most of society's hidden social rules (though I still struggle at times).  On the contary, those diagnose in adulthood did not benefit from early intervention.  They likely did not have an IEP that outlined their support needs, strengths and challenges related to their autism.  Their challenges were either dismissed by those around them as "behavioral problems" or confused with a mental health disorder such as depression or anxiety.  Being diagnosed early has the benefit of making it easier to qualify for services that can make day-to-day life a little easier.

The added benefit of being diagnosed in childhood versus adulthood is knowing the reason behind your limitations and challenges that you face is due to having a brain "wired differently" and is no fault of your own.  Having my parents explain my autism diagnosis and what that means in terms of how I saw the world set the foundation of being able to advocate for my needs.  Knowing that my difficulties of making friends and regulating my emotions were related to having autism saved me from the confusion and depression that so often face those who received their diagnosis at a later age. 

That being said, there are also some challenges and issues that face those individuals diagnosed early.  For instance, sometimes you can develop an attitude of "self handicapping" or putting artificial limitations on yourself due to knowing the fact that you have autism.  This mindset might have been picked up from the way autism is portrayed from a societal perspective or from the way those closest to you have talked about your condition.   Also those diagnosed early were likely put into therapies that adopted the "pathologizing attitude" of trying to eradicate the unique traits that usually accompany autism.   For instance, you might have been placed in a social skills group that discouraged you from having "age inappropriate" interests and tried to encourage more "mature" interests or therapy that utilizes stim suppression without realizing that stimming is a way for an autistic person to self regulate.  As a result of going through years of "normalizing" therapies, you might develop a low self esteem and resentment towards autism in young adulthood.  Whereas those diagnosed in adulthood didn't have to participate in such therapies during their childhood and adolescence.

While on the topic of  therapy and early diagnosis, I want to discuss some of the benefits of  going through therapy as a child.  The intervention that I received growing up has made me adopt a more "moderate"stance when it comes to ABA therapy.  Though not all early diagnosed autistics will agree with my moderate stance, the majority of self advocates adopt a radical "anti-ABA" stance and think all behavioral therapy is autistic "conversion therapy."   My belief is that with the right therapist and the ultimate goal is optimizing quality of life and working around limitations, behavioral therapy can be a positive thing.  It would be erroneous to say that I did not tremendously benefit from behavioral therapy.  For example, I learned a lot of coping strategies and self advocacy skills that higher my quality of life.  Without that therapy, I would live a very limited life and would not have gone to college as well as getting a job.   Seeing the benefits as well as some of the damaging effects of various interventions brought on by a childhood diagnosis can provide a more realistic and balanced perspective on this issue which will make it easier for the "pro ABA" autism parents to consider our experiences.

These are some differences that I observed between those diagnosed early versus those diagnosed later with autism.  Please keep in mind that this blog post is based on personal opinions and experiences of one early diagnosed autistic self advocate  and is not a general reflection of  the experiences of all late diagnosed or early diagnosed autistics.  People have different experiences and there are exceptions to every rule.  There could be late diagnosed autistics who support ABA and wished they benefit from some of the therapy or an early diagnosed autistic who was so damaged by ABA therapy as a child that they staunchly oppose it.    However, I want to write this post to give some perspective of some differences in case there are others out there who experience the same thing since age of diagnosis has great bearing of one's experience of living with autism spectrum disorder. 


Sunday, July 14, 2019

Autism and "Bad Days"

In this post, I'm going to discuss about a somewhat uncomfortable topic yet important to discuss.  It is about the "difficult days" of living with autism.  The days when using your coping strategies just fails.  It is the days when you resort to using behaviors or  go into a full blown meltdown.  It can be do to a lot of things like autistic burnout   things just don't go your way, menstrual cycle for females etc.  Typical human beings have bad days when the demands of daily life just outweigh their current coping mechanisms.  Unlike typical people, autistic people are made to feel  ashamed for having bad days.  Often, we are referred to having a "tantrum" or having "behaviors" when in reality they are having an "off" day.   Consequently, we put pressure on ourselves to not have "off days" for fear that the people around us will be irritated that we did not use our strategies.  However, holding and bottling our frustrations can destruct us from the inside.

For instance, there are days when I feel that self management and self regulation just fails me.  When I get stressed, I would yell "meat!' out loud.    If I get really agitated, I would slap my fist on the table or throw objects on the ground.  However, my family (more specifically my dad and grandma) don't know how to deal with my outbursts.  Their reactions (e.g. scolding, saying "don't do that") sometimes makes the situation worse or only furthers my escalation.   They don't understand that I am in distress and that I don't behave this way intentionally.

Another instance where I was made to feel ashamed of my "outbursts" is with sessions with my behavioral therapist.  Her confrontational personality would sometimes trigger me and I would start pounding my fists on the table or destroying objects etc.  In response, she would get impatient and say "You should know better!" or "Why aren't you using your strategies that I've taught you?"  Overtime, I was made to feel ashamed for expressing my distress  because I feel that I should know better because I went through behavioral therapy that taught me self regulation skills and that I "should know better."

The truth is that even with behavioral therapy, there are still going to be times when self management fails you.  When we are escalated, sometimes our emotional coping "tools" are not accessible to us.  When there is a lot of demands on our plate, we may have used all our coping strategies in dealing with previous demands. When one more "stressor" gets added to our plate we can lose control very quickly.  What I want those who care for and support someone with autism to understand is that even though our behaviors can be very startling and at times stressful, please understand that we don't intend to behave this way.  We are just as scared and uncomfortable with our intense feelings and behaviors.  Just like typical people, we need compassion and understanding during our bad days.  A post that I found useful was written by two autistic self advocates that discuss the reason behind   "meltdowns, self injury and aggression" that we so often display when we are escalated.    We have bad days like everyone else we just might deal with them differently.

Image result for distress emoji

Tuesday, July 9, 2019

What about the "Middle of the spectrum?"

I'm sorry that I haven't written a blog in a long time.  I started a new full time job in January and have been acclimating to the job along with continuing to adjust to living in Washington state ( a separate post on this later).  Now that I am on summer break,  I have some time to squeeze a couple of blog posts.  This topic has been on my mind and it relates to the topic of "functioning labels."  Whenever autism is discussed, it is assumed that it comes in two forms: the "very brilliant Aspie"who appears to be very self sufficient but socially awkward and was able to get through life by camouflaging their symptoms or the "severely nonverbal autistic" who is unable to care for themselves and needs to be watched 24/7.   This is the solid foundation of the commonly used "functioning labels" in society.    Surely there are individuals who would fit the two autism profiles I just mentioned. What is missing from the conversation  is those autistic adults and children who don't quite fit in the "very mild" or "very severe" categories.These are the individuals who would be in the "middle of the spectrum."    Sometimes they are shoehorned into the high or low functioning labels.  These are the individuals who would be in the "middle of the spectrum."    Their experience or even existence is rarely acknowledged in the greater dialogue of autism . As someone who considers herself to be "somewhere in the middle" between the two extremes, it is hard to find a more balanced narrative of autism that matches my experience.  It also creates a feeling of uncertainty within myself because I feel that people won't take my needs for support/accommodations seriously.  It is with this post, I am going to explain why I feel to be "mid spectrum" and how the very mild/very severe dichotomy does a great disservice to people like me.

To begin, I wasn't one of those individuals who managed to camouflage their symptoms until adulthood.  I was diagnosed with autism early in life.  I had very limited speech, was socially withdrawn and appeared oblivious to my surroundings.  I wasn't toilet trained until four years old and had intensive speech, occupational and social skills therapy during my childhood as well as adolescence.As a result of these therapies, I learned to manage my autistic characteristics to the point that I began to resemble someone with Aspergers or a neurotypical person.  When people look at me now as a 27-year old young adult, they can't tell that I am autistic.  Some people believe that I  was always super high functioning throughout my life.  In reality, I wouldn't be at the point I am today without all the help I received during my younger years.  So how does this relate to the topic of "being mid spectrum?"  My experience shows that some individuals started out very visibly autistic when they were young but with the help of therapies and support at school, they gained skills that makes them appear "mild".  This shows functioning  can change throughout life.  This is why the high/low dichotomy doesn't work for me because it overlooks this fact that I've just mentioned.

Another  issue in which the "high/low" dichotomy is falsely implied is in regards to support needs.  Whenever this topic is brought up it is framed as either you need "24/7 support" or "you need no support at all." .  It feels like if you can be unsupervised some of the time or you can articulate your support needs, then people assume that you need no assistance at all. The truth is that there are a lot of autistic people who don't need 24/7 care but still need assistance nonetheless.

For example, I can take care of my basic self care needs such as showering, eating and toileting.  In high school, I faded my 1:1 aide so I can be prepared for college.  I learned to take the bus to community college from my house so my mom didn't have to my chauffeur all the time.  All the life skills I did learn enabled me to obtain my bachelors degree and obtain a full time job (though I had a job coach for emotional support).
Despite all of this, it would be erroneous to say that I no longer "require direct assistance" because I can be unsupervised and independent  some of the time.  There are still many areas that I still struggle with as a 27-year-old young adult.  I still struggle with certain life skills such as cooking and cleaning.  In addition to autism, I struggle with anxiety which can sometime get in the way of getting through the day.  My difficulties with executive  functioning,  multitasking and sensory processing can make tasks like driving difficult.  However because my speaking abilities are close to neurotypical and what I have accomplished so far, makes people overlook my challenges and limitations.  Sometimes, I feel like I have to hold myself back or appear "more disabled" than I really am in order to have my support needs taken seriously.  What I want people to take away from this is that allocating support for autistic people shouldn't be a black or white issue. There is a huge "grey area" who's needs are overlooked.   You can still be independent and require assistance at the same time.

Another area where I feel that people in the "middle of the spectrum"are those with autism who can have basic conversations but have great difficulty talking about complex topics and feelings. They also can take care of their basic self care needs (like using the toilet, showering etc.). They wouldn't fit the "severe/low functioning"  category.  Yet, they wouldn't be considered mildly affected by their autism either since they still have characteristics and limitations that are visible to the casual observer.  I know individuals  both on a personal and professional who would fit the profile of abilities that I just described.  Some of them can be very social and can remember important facts on preferred topics.  Yet, they learn far below their grade and age level in terms of academics (reading, writing and math).  They would be considered by clinicians, parents and teachers to have "moderate autism" or "level 2" autism. However, they tend to get overlooked in the wider autism discussion in favor of  "mild" or "severe" individuals with the disorder.  They wouldn't neatly fit into the very rigid "high functioning" or "low functioning" categories.  These individuals have their unique abilities and challenges that is considered to be in the "grey area." Like people classified with severe autism. they tend to have their abilities discounted and be segregated from their neurotypical peers.

As from this discussion, autism is very wide and complex spectrum. No two individuals will be affected the same way and will have different abilities and challenges.  What I want people to take away is that we can't ignore those who are "in the middle of the spectrum" or try to shoehorn these individuals into the "high functioning" or "low functioning"categories.  If you want to read another blog  about this topic  Faithmummy, a mother of two autistic twins, writes about some of the challenges  that come from being "right in the middle."  We cannot neglect "mid spectrum" individuals when it comes to advocacy efforts.




Monday, November 5, 2018

Why I am take a Moderate stance to Inclusion

Nowadays in the disability community, the word "inclusion" pops up in a lot of conversations.  It is a mantra for parents, professionals and self advocates alike.  As someone with a disability that was fully integrated with nondisabled and neurotypical people, I believe in the importance of inclusion and how it is beneficial for both disabled and nondisabled persons alike.     Recently I read an article that was shared on facebook that changed my perspective on inclusion.  This article, made me take a hard look at my views and examine some of my life experiences in which the positions posed by pro-inclusion activists conflict with some of my own as an autistic self advocate.  It is with this post, I will share why I take a more moderate stance in the inclusion debate.

There are some scenarios in which inclusion simply does not work or falls short in serving those with special needs. Sometimes inclusion is a "false reality" and that it paints a picture that everyone with a disability will be welcomed and fully embraced in the community.  The reality is that not all communities are created equal in which some are more embracing of  "differences" than others. One such example is in the school system. Advocates who support full integration of those with disabilities into regular education classes miss the fact that not all school districts are created equal in provisioning of special education services.  This is true especially in big areas such as Los Angeles which is comprised of multiple school districts all varying in quality.  I was lucky that the school district was able to provide support services (such as a 1:1 aide, counseling etc.) that made inclusion  possible.  However for some of my friends, being pulled out of public school and going to a more specialized school was the best thing for them.

Another personal experience that supports why public school may not always be the best thing for special needs student was my work as a behavioral aide.  The students we take in couldn't handle public school  because of various behavioral issues and need a more intensive environment than a traditional public school environment.  In the particular program I worked in (it was a relationship based program for students on the autism spectrum), there was more 1:1 attention and the schedule was more flexible which allowed us to cater to the individual needs of the student than a traditional public school environment.   I saw the students progress and respond well to the more individualized approach of the school.  The benefit of nonpublic schools is that since they don't have to cater to the needs of neurotypical students enables students with disabilities to get their social, academic and emotional needs met.

Another example in which integration can sometimes not work for people is in the workplace.  The idea is that people with disabilities should work alongside nondisabled people.  While I am against sheltered workshops and the exploitation they provide for those with developmental disabilites, mainstream work environments sometimes aren't the most welcoming or embracing either.  While I was lucky to find a work environment that was supportive and embracing, I have heard of people having bad experiences whether if it was with their bosses, co-workers etc.   For those who didn't have success in a traditional work environment would benefit from an out of the box approach.  This is why I like the idea of a micro business that only employs workers with developmental disabilites.    For instance, Extroardinary Ventures a nonprofit based in North Carolina provides vocational opportunities in which those with developmental disabilities can sample different jobs and see which ones would suit their individual needs.   With this type of model, accommodations are ensured and job coaches are there every step of the way to make sure it is successful.

A second counterargument in which some pro-inclusion activists seem to overlook is that some people with disabilities don't enjoy or  want the same life experiences that people without disabilities typically enjoy.  An article written in Psychology Today by a mother of an autistic young man   argues how sometimes kids with "severe" disabilities (as well as some with mild to moderate impairments)  may want to only have relationships with support staff instead of traditional unpaid friendships that most people take for granted and how inclusion advocates shouldn't dismiss these types of relationships as inferior.  In that same article, she also argues that kids with autism sometimes don't enjoy the same events such as birthday parties and community barbecues that are reveled by neurotypicals.

As someone who spends most of the time fully integrated with nondisabled peers, I understand some of the frustrations that are voiced in the article.  I've had experiences with both unpaid friends and support staff.    The relationships I've felt the closest to were with the people who were paid to be with me (from therapists, school aides and companions).  I felt that they were in tune to my needs and understood my disability.  They knew and supported my interests in Hello Kitty, Disney Princess, Frozen etc. and never looked down on me for having unconventional interests.  It is very hard for me to find unpaid friends my age who share my interests in things like Peppa Pig  and other "childlike" cartoons since it is not a common occurrence  among people in their 20's.    With support staff such as companions, the nature of the relationship and the financial compensation makes them enter "my world" and I don't have to worry of the complexities that are typically common with traditional friends.  I also don't enjoy the same experiences like going to noisy nightclubs and getting "wasted" that most of my peers in their 20's seem to enjoy.  These examples and scenarios that I just discussed show how the ideals of inclusion are not always in line with the desires of some individuals with developmental disabilities.

My last argument on how integration can sometimes be inappropriate is that sometimes people may only want to hang out with others who share their disabilities.  When you are with others who share your struggles, you realize you are not alone and you know right away that you will be embraced and accepted.   For example, I take an art and a recreation class in which all the people taking the class are adults with a developmental disabilties.  What I like about these classes  is that I feel that I can be 100 percent myself knowing that the instructors will be accommodating to my needs.  I can freely jump and down and bring my fidget (I carry a sea urchin like squishy toy) knowing that no one will judge me for all my "quirks".   However in some states, you cannot use service hours to fund activities (like the classes I currently take) that are exclusive to only those with developmental  disabilities just because they are not technically "integrated."  It misses the fact that some people had bad experiences with taking integrated activities in which they were bullied, ostracized or simply not welcomed.   We all need our "safe spaces" and sometimes taking separate activities with others who share our struggles is preferable at times.

In summary of this blog post,  the positions and solutions that are posed by radical inclusion advocates are not always appropriate depending on the situation.   I would like to  also emphasize the "moderate" part of my argument.  Some advocates reading this post might criticize me by saying that I believe in segregation of those with disabilities or that I support institutions, group homes farmsteads and other programs that marginalizes those with disabilities.  Firstly, I want to emphasize that I don't believe in programs or models that belittles or emphasizes the inferiority status of people like myself.   Secondly , I believe that it is important for people with disabilities to have experience interacting with nondisabled people since it benefits both parties.  Inclusion helps break down some of the preconceptions that society holds against those with disabilities.  That being said, inclusion is not a "black and white" issue as it so often is portrayed.  It has some potential downsides as well.  Advocates miss the fact that not all people with disabilities have the same ideas of inclusion and it is important acknowledge this variation of attitudes.  We need to take a more balanced approach when it comes to inclusion and realize that inclusion is not the same as self determination.  It is the latter that we need to emphasize when supporting those with developmental disabilities.
Image result for disability and inclusion





Sunday, July 22, 2018

My move to Washington State and the transition process

In June, I made the decision to make the big move from the hustle and bustle lifestyle of Los Angeles to the more peaceful countryside and small town life of Sequim, Washington.  It was a hard decision to leave behind my job as a behavioral aide at a special needs school, my advocacy work in California as well as some of my friends and amazing mentor behind.  My parents bought a house in Washington back in 2016 so they can retire.  However, the people they bought the house from needed to rent it back from my parents for a year and a half.   They moved in March, but I had to stay behind in L.A. with my grandma because of my job.  I wanted to wait until the school year finishes to move with my parents.
 As you probably can imagine, this came as a shock to me and I was filled with anxiety and ambivalence about this whole transition. Change doesn't come easy for me (since a lot of autistic people have a hard time dealing with change). This is because there are multiple layers to this move.  The first layer was because we were moving to a small rural and remote town of Washington state.   One thing about moving to a big city is the convenience factor in having a lot of options (in terms of stores as well as transportation).   Moving to the countryside where everything is out of reach is probably the toughest part of this transition.   I am still in a state of culture shock with all these changes.
Another concern that I have with living in a small town is the limited resources for those with disabilities and autism.    More specifically, I was afraid that I wouldn't find a qualified young person who can be a companion/support person to me because the town in which I live in is composed mainly of retired people.   At first, it didn't look promising since my mom reached out to various people and they couldn't come up with anything that was of help to me.   It wasn't until we reached out to this one nonprofit  that serves adults with developmental disabilities.  Luckily, the executive director found someone who was a good match and has the right experience and qualifications ( she takes clients out into the community as part of her job).   I was surprised how fast I was able to find someone because usually I have to interview and try different people out until I get the right fit.
Another difficult aspect of this transition is that we are becoming an intergenerational household (just like other asian families) with my grandma moving in with us.  Although she is a loving lady with good intentions, she can be overbearing and has a lot of nervous energy which can be difficult to deal with sometimes.  Her English is also not the greatest and speaks Japanese to me which creates a language barrier. I am still trying to figure out how to balance this dynamic with my grandma without it damaging our relationship.  I think that if we have spend some time apart, it can make this living arrangement a lot more easier for me.  Luckily we lived together in L.A. for three months before the two of us joined my parents in Sequim.

I am still trying to deal with my yo-yo of emotions of trying to embrace this move but also missing California.  Surprisingly, I am dealing with this transition exceptionally well.  I thought I was going to cry every single day.  It helps that the people are very helpful and understanding.    The road ahead is not going to be easy and I still miss California very much.  At the same time, I wanted a fresh start as I had a lot of self destructive scripts that I had adopted from living in L.A. and wanted a break from the fast-paced and competitive nature of Los Angeles.  Then comes the most daunting part that I is looking for a job in a small town that is mostly composed of people who are retired  .  Because of this,  I'm not sure if I will live in Sequim forever or long term. However,  I get to enjoy living in a big house (since I lived in Condominiums all my life) and want to try out small town living.  As my mom said, "life is a journey."


Sunday, June 10, 2018

On autistic burnout and regression

If you have met and come across the writings and blogs of different autistic self advocates, chances are you are familiar with autistic burnout and passing.  I've never fully heard of the term until I became more active in the autistic community and started reading the writings of other self advocates like myself.  In fact as this article states, the concept of autistic burnout is rarely discussed among nonautistic professionals and parents.
Another phenomenon that can co-occur with burnout is "autistic regression." Unlike burnout, regression is widely known among nonautistic parents and professionals.  When an adult or child reverts to an earlier stage of development, parents and professional freak out  because they fear that their child or client is losing skills and won't ever gain it back.  They don't understand that what they see as "regression" is part of the "peaks" and "valleys" that characterize life.  Regression is a term that  is wrongly applied in certain situations and is a pathological term to describes the "lows" that autistic people go through.
I never knew that some of the challenges or limitations that I experienced throughout my adolescence as well as my young adult years could be the result of autistic burnout.  Until I knew these terms, I thought what I was going through was due to laziness or that I "was creating this in my head."  It wasn't until I started following various autism related pages on facebook and starting a twitter page that a lot of my fellow autistic peers were going through similar experiences.  There are days where the expectations of everyday life were just too much for me. Camouflaging myself just to get by in a society that was not built for me zaps my energy to the point that it barely leaves enough energy to do other things (e.g socializing, cleaning the house).    Whenever there is a layer upon layer of difficult situations (e.g. tests, exams) that demand a lot of coping skills, I can get easily irritated which can also lead me to get upset or it can lead to what we label as having a meltdown.   Sometimes, this can lead me to "lash out" aggressively without meaning to.  This is when self management just fails me and no behavioral therapy can entirely eliminate meltdowns due to burnout.
Transitions can also excacerbate burnout and can precede "regression."   I've  experienced this with the numerous transitions I have went through during my young life.  However, I've felt the effects of regression the hardest when I left the structured nature of special education services in high school and transitioned to college. Since I had a lot of unstructured time, my anxiety was at an all time high and I felt depressed since I missed the high school so much.  For awhile, I felt sad and isolated and did not want to socialize that much.  In my third year of college,  I was experiencing a high level of anxiety about my upcoming transition to a four year university/dorm living.   In dealing with this transition,  I rediscovered my interests in Hello Kitty, Disney Princess and other kitschy characters that are related to childhood innocence.  This may look like regression  because I am reverting back to a childlike state or "old childhood interests.  In reality,  this is how I cope with change because it is the one thing I can hang on to.
If you or your loved one is experiencing burnout or having regression due to transitions, it is important to not freak out.  Instead try to be supportive of an autistic adult or child experiencing burnout and come up with an action plan together in trying reduce the amount of negative stress and anxiety burnout brings.  As for regression, a lot of times (especially true for teens and adults) it is related to something that is going on in the autistic person's life (e.g. moving to a new place).  Please understand that just like other humans, autistic people go through "dark periods" as well and it does not mean they have lost skills and will never gain it back.  If you or your loved one is in the midst of regression, just let it run its natural course and have the confidence that it will all work well in the end.  Regression is not necessarily a bad thing and we need to stop attaching negative stigma to it.
We need to bring more awareness and recognition of the signs of autistic burnout in the mental health fields so professionals can effectively help the autistic population.

Image result for burnout