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.

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.