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.

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.

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."

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.

Why IQ scores are erroneous for autistic people

When it comes to measuring the capabilities and challenges of autistic children and adults, IQ is one of the main measures that is employed.  However, there are some reasons why traditional IQ tests are not the most accurate ways in understanding the full scope of individuals on the spectrum.  For label-obsessed neurotypicals, these tests can provide explanation in a simplistic matter in understanding the capabilities and challenges for those on the spectrum.  However for the autistic community, these tests can be a disservice especially when it comes to educational placement and provision of services. It is with this post, I will discuss some of the flaws or shortcomings of traditional IQ tests.

One of the reasons, why IQ tests are flawed is that it can underestimate or overestimate the abilities and challenges that autistic people actually have.  In fact, IQ is the biggest determinant when considering if a person is "high functioning" or "low functioning." There are two scenarios in which this can occur.  For people whose autism is not as apparent and have the privilege of passing,  our high scores on intelligence tests can prevent us from getting the support we need.  There is this erroneous and outdated assumption that if an autistic person has high intelligence then they can navigate  neurotypical society with little to no support.   In fact, some states will deny support services to those who score above 70 on IQ tests.  However as this article states,  intelligence tests don't account  the executive functioning challenges that autistic people without intellectual disabilities face in their day-to-day lives.  For instance a person who tests in the "average to above-average" range on IQ tests may have difficulty to do important tasks of daily living such as grocery shopping, budgeting, personal hygiene etc.
 I am one of those on the spectrum that would score high on traditional intelligence tests, but I still find some crucial activities of daily living such as cooking, making doctor's appointments, transportation etc.  very challenging and still require support to navigate some of these tasks.  My so-called "high IQ" masks some of the social challenges (e.g. social anxiety) I still face as an adult on the spectrum.  Eventually when I plan to live on my own, I will require support to effectively manage the transition of living away from parents as well as managing activities of daily living.  However, I am afraid that my "high IQ score" would serve as a barrier for people to recognize my support needs.

For the other scenario,  having a "low IQ" can make people underestimate the abilities of some autistic people especially for those who have limited to no speech.   Autistic individuals without any reliable spoken language tend to score low on traditional intelligence tests which makes the people around them doubt that they have any capabilities.  For instance, their parents would have been told by many doctors and experts that they would more likely end up in an "institution" and less likely to be mainstreamed and pursue postsecondary education.  They would also more likely  be relegated to segregated classroom settings.  However there is a growing group of nonspeaking autistics that have shown that "being nonverbal does not mean not thinking."    In fact, some went on to pursue postsecondary education as illustrated in the lifestories  of DJ Savarese and Sue Rubin.  These examples show how faulty the results of traditional IQ tests can be for those who are more affected by autism.   Consequently, it can lead people to mistakenly believe that they are "intellectually disabled."

Another big reason why intelligence tests are inaccurate measures, is that autistic people usually don't test well.  These tests require a person to sit in a room for a long period of time and have questions that contain a lot of verbal information.  The testing environment may also trigger sensory  issues in some autistic individuals.  Some also don't have the attention span and cooperation to do the tasks the test examiner wants them to complete .  When I first got diagnosed, I took a verbal IQ test in which I did terribly on due to my limited language capacities.  The examiner who was a young graduate student mistakenly thought that I had an intellectual disability based of my test results.  When my mother talked with the head psychologist, she said I was given the wrong test.  This shows how the structure of the tests themselves can not accurately predict the true intelligence levels of autistic people.

Lastly,  people on the autistic spectrum demonstrate their intelligence in different ways than what is reflected on traditional IQ tests like the Wechslers or Stanford-Binet scale.  For instance, this article talks about how these IQ tests set autistic people up to fail by overlooking their hidden talents by emphasizing their disability. For instance, two boys that I work with (I am a paraprofessional at a special needs school) demonstrate the discrepancy between IQ score and actual intelligence. One has a short attention span and gets easily overwhelmed with a lot of verbal information which would make testing his IQ very hard.  However he has knows roman numerals, can write the alphabet backwards and can script in different foreign languages. The other boy also has a hard time with paying attention and would have a hard time completing the tasks and following the verbal instructions that characterize most IQ tests.  However,  he is really good at computers (he has his own youtube channel), knows the different models of trains and cars and memorizes license plate numbers and phone numbers.  These boys would not test well when given traditional intelligence tests, but it is evident that they have hidden talents that are not easily seen.

These are some of the ways how intelligence tests can fall short of describing the actual abilities and challenges that autistic people have.  Autistic people often have "spiky profiles" meaning that they will have strengths in some areas while they struggle in other areas.  We need to stop conflating autism with intellectual disability.  This means state supports (especially the adult service system) need to cater more to the needs of autistic individuals.  Therefore, eligibility criteria  to qualify for such services needs to changed to reflect the unique and ever changing needs of those on the spectrum.  Other methods need to be explored in terms of measuring the actual intelligence of an individual with autism besides relying on the Wechsler scale.  We need to look at the whole person on the spectrum and then determine the appropriate supports rather than just making assumptions based on a single IQ score.

The Medical vs. Social Model of autism and disability

This topic has been on my mind for awhile but other topics seem to take precedence when writing blogs.   It is the medical vs. social model when discussing disability.  In case you are not familiar with these concepts, there seems to be two different views when talking about disability.  The medical model looks at disability as a problem that needs to be fixed.  This school of thought breaks down the characteristics of different disabilities as a set of symptoms and focuses on treatments and cures.  On the other hand, the social model looks at disability as an important identity to a person and how different social forces can create either support or create barriers that affect the lives of these individuals.

A perfect example of the social and medical models at play is with autism.  For a long time, the dialogue of autism has been focused on the medical model of deficits, cures and symptoms.  Some examples of the medical model of autism include behavioral interventions that try to make autistic children "indistinguishable from peers," the use of  functioning labels,  big autism organizations that are runned by neurotypicals that funds research into the causes of autism with the hopes of preventing the condition.  The product of  all this medical rhetoric is negative stereotypes made about autistic people.  An example of a commonly held stereotype is that "autistic people lack empathy" or that we are "socially awkward and immature."    As a result, the medical model has led society to view autistic people as "less than human" and are not deserving of the same rights as humans without disabilities.  I believe this thinking has played a big role in the continued exclusion of the voices and experiences of adults on the spectrum.

Self advocates like myself had enough of the dialogue being focused on cure and deficits.  We asked for a more social model of disability to take place of the prevailing medical model.  This is what we call neurodiversity.  Neurodiversity states that people with different neurological conditions such as autism, Dyslexia, ADHD etc. are wired differently and that these different neurostyles need to be accommodated as well as accepted.  Critics accuse the neurodiversity movement of downplaying the challenges of autism and glorifying its strengths.    Most neurodiversity advocates (myself included) acknowledge the challenges and still see autism as a disability.  The main point of the movement is to remove the negative stigma of autism and that disability is not something to be feared or gets in the way of happiness.  Proponents of the neurodiversity movement believe that ignorance and negative societal attitudes get in the way of happiness in those who live with autism and other disabilities.   We demand the same human rights and civil liberties that are granted to nondisabled people.

 The social model of looking at autism is slowly taking force.   Some examples is the is the call for the inclusion of self advocates in setting the course of autism research; the relationship between acceptance of autism and mental health issues that commonly occur in autistic people is being finally explored; as well as the push for self determination and person centered planning in adults with developmental disabilities.  There are more autistic self advocates that are sharing their experiences than there was 10-15 years ago.  I believe if we embraced a new social paradigm of addressing the social barriers that autistic people (as well as others with other conditions) face,  the quality of life and outcomes of these individuals would be greater.