Monday, March 14, 2016

"Passing" in the Neurotypical World...

I want to write about the phenomenon of passing today...
Wikipedia defines passing as:
...the ability of a person to be regarded as a member of an identity group or category different than their own, which may include racial identity, ethnicity, caste, social class, sexuality, gender, religion, age and/or disability status. Passing may result in privileges, rewards, or an increase in social acceptance, or be used to cope with difference anxiety. Thus, passing may serve as a form of self-preservation or self-protection in instances where expressing one's true or authentic identity may be dangerous. 
Etymologically, the term is simply the nominalisation of the verb pass in its phrasal use with for or as, as in a counterfeit passing for the genuine article or an impostor passing as another person. It has been in popular use since at least the late 1920s...
I want you, as you read this, to think about that last emphasized bit:
" a counterfeit passing for the genuine article or an impostor passing as another person."
 Passing is a phenomenon that one sees, in regards to any number of classes.  Perhaps it's most thought of in regards to race, with African-Americans passing as Caucasians...yet hardly anyone considers  the plight of the disabled, especially those with "invisible disabilities", with neuro-developmental disabilities and the like.  Many African-Americans, if they were of mixed heritage and could do so, chose to pass as white.  And why did they do this?

To be included, to not be excluded, to feel safe, for equal opportunity and more...

The same is true of the disabled, particularly of those with neuro-developmental disabilities, those on the autism spectrum, those with Agenesis of the Corpus Callosum, ADHD, FAS, Fragile X Syndrome, Tourettes Syndrome and others.

The phenomenon of passing is what is behind ABA or "Applied Behavioral Analysis", otherwise known as "dog training for human children."  It teaches these children on a subconscious level that who they are is not acceptable, that they must behave in a certain fashion to fit in to the "normal" world.  Many of the children that are subjected to this "therapy" later in life have severe PTSD, not to mention having had their personalities suppressed and destroyed and not allowed to develop into what it otherwise would have.

While there are exceptions, those on the Spectrum and those with ACC most often have average intelligence...I would argue that the damage done to these individuals who have made themselves pass as neurotypicals is profoundly psychologically damaging.  I say this because we know, we are fully aware of both our neuro-diversity and our intelligence.  We also know that in this world today, in many or most cases we will not be accepted as we are, and we will not be given equal opportunity unless we fight for it.

Despite the ADA the world is slow to change.  People and corporations both push back against accommodations until their backs are against the wall and then they change.  The psychological and sociological attitude of the country has improved, but not nearly enough.  Very often, I and people like me are treated as second-class citizens, the butt of jokes and even scorn.  I had a roommate years ago that insisted if a disabled person couldn't do a job without accommodations, that  they didn't deserve that job under any circumstances.  I could never forget this warped mentality, because he was basically saying to me you are not equal, and if you're not equal you don't belong.

Even prior to my diagnoses (or I should say especially  prior to it) I was acutely aware that I was neurodivergent, and that who I was as a human being was simply not acceptable in "society."  I fought hard to attempt to appear as neurotypical.  In some ways, this was easy, but it entailed my repressing and suppressing who I was to such a degree that I lost myself in the process.  Prior to my diagnoses(es) I had simply given up on achieving any goals or dreams, considering myself less than others, not able of "hacking it in the 'real world .' " Once I received my diagnoses that changed for me (to a great extent at any rate)...I began to refuse to pass in order to fit in.  I began to demand that I was treated equally despite my differences.

This helped to some extent, but there have been and will always be those who attempt to "put me in my place" and let me know that I am "less than", that "if you can't hack it with the 'big boys' you don't belong."  When I have asked for accommodations I have even, at times been laughed at and told "you're not disabled" (they mean, I'm not in a wheelchair or some other visible disability) so you don't deserve any accommodations.

For the majority of my life, I was so concerned with, and so preoccupied with passing, so terrified of saying or doing the "wrong thing" and being "discovered" as neuro-divergent that this neuroses took up almost all of my mental energy.  The majority of the time was spent second guessing everything I said, and everything that I did.  My entire mental energy was consumed with "putting up a false image" one that would be accepted by those around me.

The thing is, in today's world if we choose not to pass, we run the very real risk of not being included, not being afforded our equal rights, not being taken seriously.

The real problem here is that of ableism. Ableism is the term used for a social ideology under which able-bodiedness or able-mindedness is privileged, often resulting in discrimination or social prejudice against people with disabilities. Ableism is based on the idea that a person is characterized by their disabilities, and that these disabilities make them inferior to the non disabled.

We live in a society that chooses to favor the "able" as "normal" and the disabled as abnormal or undesirable, pitiable and the like.  Currently there are laws that allow "charitable" organizations to run "workshops" for the disabled where they get paid pennies on the dollar, as little as $2 an hour to work, while these organizations rake in huge amounts of profits for their CEOs and COOs.  These laws are finally being challenged and eliminated, but not quickly enough.

For those like myself unlucky enough to be disabled to the point of not being able to work and end up collecting Social Security Disability Insurance (SSDI) we are relegated to a life of poverty, we are not allowed to own more than $2000 in assets...the system rigged in such a way that it is nearly impossible to even try to return to work on any level, without much needed medical and other benefits being stripped from us...the deck is stacked against the disabled.

I feel like I got sidetracked from what I initially set out to write about, but the above is most definitely pertinent to this discussion.

I wish I could open up my heart and mind for the world to peak inside for a single day.  I want others to know what being made to pass does to an individual's self-esteem and self-worth, what it does to one's hopes and isn't good. :-(

Such is my life as someone with ASD and Agenesis of the Corpus Callosum.  Such is the life of the many made to pass as neurotypical in a world that would not otherwise accept them.

Something I think about every day are those children that are aging out of the system into "adulthood."  I remember when I turned 18, and had the emotional maturity (at that time) of a 10 year old.  I remember the horrible things that happened to me as a result of this.  I would hope that all ACC and ASD parents out there would continue to fight for a more inclusive world, where their son or daughter could shine, grow, mature and develop into their own unique self and be a productive member of society.  Teach your child now that who they are is perfect, it is just right, that they need not change to be accepted by anybody.  That who they are has value in and of itself, and that they can leave their mark on the world...I promise you, if you do, you will not be sorry.


  1. Joe, I saw your interview with Chris on Facebook. It lead me to your blog and I am glad that I found it. My son has autism, and 3 of my nephews have autism, one has PDD-NOS. I will be reading your blog regularly and sharing it with others. This particular blog post has spoken directly to me as a mother. Ever since my husband and I found out that our son has autism (he is 13 now but we found out when he was 18 months old) I have avidly opposed any type of ABA "therapy". I think it's degrading and I'm sorry but my son is not an animal to be "trained" in such a way. I have often second guessed myself on my feelings on ABA, and had even taken a class on it during my educational journey but that class again confirmed that my instincts as a mother shouldn't be second guessed. Seeing your blog and your opinion about ABA has helped to understand from the perspective of a person that is neurodiverse. You see, I would ask my son but he is nonverbal and he has a very hard time expressing his feelings to us and that is extremely difficult as a parent because I love him and want him to have what he needs so he can be happy in this life. He does have his own little personality and sometimes he gets that teenager attitude but it's his and its original.

    Thank you for allowing Chris to interview you, thank you for this blog, and thank you for sharing because you are helping lots of people by doing so!

    1. Thank you, it brings me great joy to help educate people about ACC and ASD. Mind you, there are now therapies called "ABA" for the sake of getting insurance to pay, that are not really ABA, but a much more humane "version" of it...while I still have mixed feelings about it, I "suppose" it can help with some extreme behaviors, but I stand by what I wrote, I am in general, dead set against ABA. Thank you for being your child's advocate