Dear Phoenix,

There seems to be this odd competitiveness among humans to be both better and worse than the other.  The self-help sections of bookstores have grown exponentially in the past decade as Who Moved My Cheese disciples sell their success strategies to otherwise mediocre people.  Self-diagnosing tests have created a Psychology section of books to what was traditionally an obscure topic, all for the sake of making people feel superhuman, leaving mediocrity behind and elevating themselves to fame or fortune.

 

Until you get them in a room with reality tv and a box of lowfat snacks.  Then it is all about whose pain is worse, who had the biggest heartache, who must work hardest to achieve their goals.  It is one of those pivot points inside humans I just do not understand.  In the disability world, this phenomenon is amplified as parents and professionals try to scale the autistic experience from worst/hardest to best/easiest.

 

I know you’re mad at me now, but keep reading.

 

I am not oblivious to the fact that some of us on the spectrum require more day to day interventions and supports than others.  I have worked with families that had autistic children who still required assistance toileting, bathing, and eating well into adulthood.  One can’t observe this truth and not also accept that the total care of another being requires extreme patience, energy, and often depletes the freedom of the caretaker.  But is that because of Autism?

 

I know I promised not to mention it, but it is our salad problem all over again.  No matter how dependent on others a person with Autism may be, they are still a person – we are all salad.  However, we still live in a society deeply influenced by Eugenics.  Up until the late 1970’s US states had sterilization laws in regards to people with disabilities, but no quality of life laws.  Our society as a whole has failed to recognize the person and has ignored the real solutions, placing quality of care squarely onto the shoulders of their families.  To avoid institutionalizing their loved ones, and seeing them demonized, sterilized, and ignored, families set out on their own to create a life worth living.  

So is this autism’s fault?  No.  It’s our fault.  Willful ignorance and lack of supports for caretaking families add an unnecessary clap chain to their ankles.  Families exchange their own freedom and sometimes even sanity because they simply cannot find adequate relief.  Many do so while also being ostracized.  It is as if society expects a parent who by happenstance gives birth to a child with a disability must now give up every sense of her own individuality.  What does she have left to do other than complain?  I can see how this way of life can force some parents to feel blame towards the child.

Improve respite care, pass quality of life laws and then fund those programs no matter what political regime is in office,  and the need to compare battle wounds diminishes.  Parents need help, but they also need society to stop blaming parents for everything.  We cannot frame a community around only the momentarily and narrowly defined concepts of desirable and successful.  Our treatment of our most vulnerable members define us as a society.  We value heroism and glory, but fail to recognize compassion.  Somehow we have confused compassion with complacency, removing the core understanding of how we are to love one another.  

I wonder, had Stephen Hawking not been able to afford to attend university and therefore had not have a chance to prove his mind before ALS set in, would he still be seen as a valued member of society?  What if the wheelchair came before public achievement?  Would society believe it was really him talking or would it be assumed he was being prompted?  Is what we show Stephen Hawking true compassion for his life with ALS, or is it hinged only on our focus of the tragedy that disguised a great mind because we feel we are missing something by not getting to have a verbal, traditional conversation with him?

In my case, people knew me before we could label you, Phoenix, as Autism.  Many people doubt my diagnosis because they see me happy, conversing, and acting with competence.  They believe non-speaking people are incompetent because the non-speaking cannot fulfill the listeners need to converse traditionally.  Whole people are ignored that cannot publish and lecture before they go silent.

This brings me to another point – island of genius, prodigy, savant.  More than average people, people with Autism are held to a higher achievement standard.  Despite widespread mediocrity in the neurotypical population, people with autism are not seen as a contributing member of society unless we display a savant like ability, particularly in math or technology.  This leads to most people on the spectrum having to prove themselves, again and again.

 

Let me backup a moment and explain that mediocrity is not bad.  Not everyone is a genius.  Not everyone is a global mover.  Some people are content with and excel at being ordinary.  Most people are ordinary and work in their own small spheres to create micro communities inside our larger communities.  It is what gives people a sense of home and belonging.  Without ordinary people, there would be no constants in life, nothing to return home for.

 

When a child is born with a disability, parents and professionals worry if the child will even meet the realm of mediocrity.  Concerns over reaching developmental goals in the great stride towards single, isolated independence dominate the child’s upbringing and education.  Goal posts are often set too low, or too high, as they are often subject to a very restrictive timeline.  The child is then measured and observed and when development does not stick to the schedule with an exceptionally tight margin of error, the child is proded and forced.  

 

To further complicate the process, developmental and educational models often blur the lines between ability and discipline.  A child who does not progress, but by all measures should be progressing, it is assumed the child is deficient in discipline.  The barrage of psychoanalytical therapies then begins as those on the doorstep of autism try to make sense of why this child refuses to bite the apple.

 

To the best of my knowledge to date, there is no comprehensive therapeutic or educational model in autism which allows the child to give feedback on his or her own progress.  No one asks us what we feel, and when they do they mistake our absence of answers as an inability to understand.  Just because I am still searching for the proper way to express my feelings in losing my mentor over 13 years ago, does not mean I lack the understanding of how I feel.  Imagine that for weeks you have felt ill and all of your own remedies seem to fail.  You know you are ill because you feel it, but you have no idea what kind of illness you have.  You spend some time researching and discover that your neighbour had the flu a few weeks ago, and so you assume you have the flu.  You can only assume without the input of a medical professional.  One evening you are laying in bed and feel so ill that you open WebMD and start to think you have cancer.  The emotions invoked by your fatigue and multi week sickness inflate your worries.  This is normal, but you give in and head to the doctor.

 

At your doctor visit, you talk with the nurse who asks you the vague question, “what brings you in today?”  Thus begins the process of finding words to explain that you feel ill, why you feel ill, and how it negatively effects your day to day operations.  You may even explain that you thought you had the flu, but now you are worried it is worse.  The nurse and doctor ask questions, but it is their tests and measurements that give the most comprehensive picture.  You are told you are allergic to a food you enjoy regularly, and that is why you feel ill.

 

Does being unaware of your allergy mean you should no longer be allowed to determine if you are ill and need to go to a doctor?  Did not knowing the cause of your illness make you feel less ill?  Did you lose the ability to understand illness, medicine or doctors?  No, but if you said you have autism, people would assume all of these things for you.

 

Autistics like me know more than we can communicate.  Autism obstructs our ability to translate, and does not diminish our ability to comprehend.  Often when we are unable to show our intellect, our freedoms are removed and decisions are made for us, meaning we never get to exercise our growth on our own timeline. This makes independence an ever obstructed goal post.

That is unless we show we are some sort of prodigy, genius, or savant.  Then, our opinions are heard, at least in the area of our perceived genius.

Why can’t someone with Autism be allowed to be wrong?  Can we not have beliefs different from the therapeutic model?  I ditched social skills training methods a few years ago not because I do not want to learn social skills, but because I felt what was taught was useless and diminished my strengths.  I wasn’t being obstinate, nor do I lack the ability to learn social skills systematically.  I just think most methods of teaching social skills suck and want better ways.

Oh, Phoenix, I know you are on this ride with me, but I also know you don’t see all that I see.  I must protect you.

I’ll write more tomorrow.  I know you will be listening.

-Laura (Snamuh)

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