I live in the land of in-between.  It is a desolate place that is uncomfortably wedged between charity and respect.  An unscheduled stop on the road to independence where many people with disabilities find themselves abandoned.  Few of us arrive by choice.  The land of In-between is where people with invisible disabilities live like stray wolves.  I am talking about people who are diagnosed with a disability that is mostly invisible to others, but still effects our ability to succeed without support.

My brand of autism doesn’t present itself in common everyday interactions in the way you might expect.  My autism sits quietly on my right shoulder, interpreting the world in it’s own unique way.  I call her Phoenix – my emotional and sensory self that feels the world and translates that into nerve impulses and experiences.  Phoenix doesn’t check in with Snamuh (Sna-MOO), the backwards human that is my logic and cognition, before squawking loudly in my ear at anything that displeases her.  It is challenging when all I want to do is follow Snamuh’s steady path, but I am lucky that I have learned to keep Phoenix from interfering less often.

When I tell someone, I have autism, their first reaction is usually disbelief.  Their definition of the word autism has been set by movies such as Rainman and Mercury Rising, or by more famous Autistic people such as Temple Grandin and Daniel Tammet, but I am not like any of them.  The most common reaction is, “well you look normal to me.”  How am I to respond to that?

This idea that autism should have a look places the onus on me to prove myself; prove that I am either autistic or that I am not.  Everyday I fight for my right to breathe air as the world forms juries in both courts – autistic vs not autistic, total reliance vs. total independence – leaving me in the land of in-between.  I “look” like I do not need help and therefore anything I haven’t done successfully for myself is by choice.  I do not look autistic therefore I choose to be undereducated, underpaid, and ignored.

This thinking also hurts non-speaking autistic people.  People tend to think that if they do not speak, they cannot think and therefore need to be totally controlled by a neurotypical person with credentials and certificates.  Often non-speaking autistic people do need daily support in ways I do not, but they are intelligent beings who have goals of their own.  People act in disbelief when a non-speaking autistic person starts pointing at a board and spells colligate level words in profound statements.  This disbelief is fed by the same logic that people use to push me from their view.  This idea that autism has a narrow, specific look that can and should be treated with modern medicine and family sacrifice.

In my many travels as a public speaker on the topic of autism, I bring up the land of in-between.  I try to expose the flaws in cure oriented fundraising and baseline support systems that have turned their ears away from the voices of autistic people.  And then it happens.  Those words I have come to expect will fly from the lips of the disbeliever.  The statement “Why don’t you just..” followed by a litany of ways I have failed to take advantage of the charity of others and therefore choose to remain unreached.  It is the grown-up version of my school teachers favourite phrase, “If only you’d apply yourself more..”

Why don’t you just…. apply for social security disability?
Why don’t you just… go to the free clinic and let them help you get on Medicaid?
Why don’t you just… call the [insert any number of government departments here] and tell them about your student loan debacle that never seems to go away?
Why don’t you just… apply for a grant to get your business started?
Why don’t you just…. try harder.

Most people probably mean well when they make these statements, but in reality they diminish my experience of autism into a simple solution that will cure all my worries.  Living with a disability is not simple, but applying for help is monumental.  Parent’s spend hundreds of hours each year making calls, negotiating with insurance companies, visiting government agencies, and sitting through exhaustive evaluations just to get what little support they do receive.  If it takes this kind of effort for neurotypical people to navigate the system, then how do we expect people with disabilities to navigate this system on their own?  What makes you think I haven’t tried to get help in these ways?  What if I want more than $350 per month and a group home?

I do want more.  I want to change the way the world sees autism.  But what happens when people with disabilities strive to build their own life using their specific skill set, like me?  What happens when an autistic person is self-employed, or set out as an entrepreneur?  We get treated like a kid running a lemonade stand in the Alaskan Tundra.

The Story of Student B

I watched, with my very own eyes, a family spend thousands of dollars on a professional who claimed he could help them with their autistic child.  The child was struggling to get control of his body and would often jump and flail.  He was non-speaking but was receiving no support to help him communicate his desires with the outside world.  Twice a week the parents took him to an Autism Expert who charged them $300 and hour to sit and watch the kid play.  Each week, the Expert would take notes and deliver news with a puzzled tone.  They ran tests, did scans, and evaluated this kid for a year.

The family met me at one of my presentations and seemed excited about my story.  Not long after, they brought him to me and asked for my insight.  Being autistic gives me an advantage when meeting other autistic people in that I understand how autism feels.  I usually know why they are flapping today, or being unresponsive.  I have the same feeling, but at a lower magnitude.  I can see past the autism and into the person.  This allows me to spend my energy reaching in, rather observing from afar.

After one visit, I told the family that their child is a complete, intelligent person on the inside who is obscured by his out of control body.  If they would give him access to alternative communication, he would finally be able to tell you what he needs.

“I told them he was filled with poetry, but couldn’t hold the pen.
And I was right.”

Being autistic gave this family the insight they were seeking.  It wasn’t long before he was taught an alternative communication method where he pointed at letters on a board to spell what he wanted to say.  Not only did he turn out to be a fabulous poet, it turned out that he had an interest in writing a book about traveling.

It has been a long while since I have talked to Student B, but word got out about my ability to help.  Before long I was jumping from meeting to coffee shop chat to support group answering questions about autism.  Parent’s were engaged, and became excited when they finally were able to see potential in their autistic child.  I met with families for 5 years, often out of pocket on my travel to meet them.  I was helping, and that made me feel good.  All went well until…

…I asked to be paid for my time.  Again started the “Why don’t you just…” statements.

Why don’t you just…finish your Psychology degree and get a job someplace?
Why don’t you just…get certified by [insert agency] so my insurance can pay you?
Why don’t you just…apply for grants so you can fund your business and focus on helping people?
Why don’t you just…try harder?

My visits are very limited now that I no longer own a car.  My interactions are mostly online via a webcam.  I am much more selective about who I answer after having a few “professionals” use up my time and then make a profit off of my help.

Filling in the blanks and adding up the score

Let me begin by clarifying that I do not expect that every person with autism should be paid simply because they are autistic.  I am pointing out that there is an autism industry that would be weakened severely by recognizing Autistic professionals and valuing our contributions with both intellectual respect and fair, monetary compensation.

I have 65 credit hours of my Psychology degree from Agnes Scott College in Decatur, Georgia.  Agnes Scott is a prestigious private college that I was unable to afford following a divorce, thus having to leave after 2 years.  I completed enough to have an Associates degree, but Agnes Scott does not offer a 2 year degree.  I do not have the official label for this education, but I did acquire the knowledge equivalent to anyone else with an Associates in this field.  For the ease of argument, let’s call it an Associates.

Associates Degree in Psychology, minor in Education.

My teaching experience began when I was only 14 years old.  I stayed after school every week to assist my orchestra teacher in tutoring other students.  However, I was not running my own classroom until I was 16.  At first I had 10 students that came to my house every week for private instruction, growing more every year.  I am now 40 years old and have taught hundreds of kids to play violin, viola, and cello.  12 of those years, I have focused my work on students with disabilities.  Let’s add that experience to the total in neurotypical terms.

Associates Degree in Psychology, minor in Education.
24 years teaching experience
12 years special education experience

If we took those hours and translated them into classroom hours at a university, what would I have?  Well, 30 students a month, 30 minutes weekly for 47 weeks (took out a few weeks for holidays and not including group teaching, or orchestra teaching) that is 705 hours a year for about 20 of my 24 years teaching totaling 14,100 hours.  A four year doctorate takes 120 credit hours, 12 credit hours = 12 hours in class per week = 24-36 hours study time per week.  120 credit hours plus study time means a college student puts in 480 hours of study.  Without even factoring in my years at Agnes Scott, I could still have a Doctorate plus 13,620 hours of experience (19 years).   So let’s use neurotypical terms again, but this time I will have to create a degree off another one because there is currently no courses in college that teach what I do.  Keep in mind I am not a music therapist.  I teach students to acquire the skill of playing the violin, viola or cello just as their neurotypical peers.  Even my non-speaking, disconnected students play with the neurotypical students in concert, using the same books at literature as everyone else.  I just happen to be able to tech them this and train the brain to connect with the body.  That is quite different from music therapy.  Anyhow, tally up…

Doctorate of Musical Arts in Music Education, with emphasis on special education
19 years teaching experience, which means I could have tenure at a University

Finally, let’s add in my experience as a person with autism.  This is just my experience with autism without even including the hours I have raised my autistic son alone.  I live with autism 24 hours a day, 7 days a week.  I am always autistic.  But, to be fair, let’s remove sleeping hours of the average human.  There are 8760 hours in a year.  Remove 2920 for sleeping.  That is 5,840 hours a year.  Now, for fun, let’s remove 5 years since I don’t remember much before 5 years of age.  35 years equals 204,400 hours of living with autism.

Doctorate of Musical Arts in Music Education, with emphasis on special education
19 years teaching experience, which means I could have tenure at a University
204,400 hours experience with autism

Who has spent 204,400 hours with autism other than a person diagnosed with autism?  Not many, I can assure you, yet my experience is not seen as intellectual equivalents to the people charging hundreds per hour to study autistic people.  In fact, I am expected to work for free and live off the pure joy of getting to work and a measly $300 a month in disability pay.  What?

Do you have a point?  Be nice.

I do not mean to diminish the work of people with graduate degrees.  In fact, I have many neurotypical friends who are professors, doctors, and teachers with graduate degrees whom I admire deeply for their dedicated work.  But in return, they value my work too.  They are constantly baffled and frustrated by my persistent poverty wages when my contributions are making a difference, and I have generated 20 years of results.  They get mad when I am overlooked because I don’t have the paper with a title on it.

Once upon a time, we used to work as apprentices to learn our trade.  Kids were sent to Catholic institutions to be educated by nuns and that was considered a high-quality education.  Pilots earn their wings with flying hours.  Chefs earn stars through innovation, dedication, and adding his or her personality to a dish.  So why can’t an autistic person whose abilities, like mine, cannot be quantified by classroom hours earn credentials by the hours, innovation, and the living results of their work?

“My first-person view of autism does not diminish the work of my neurotypical peers who acquired their knowledge by obtaining a graduate degree, but neither should their PhD diminish my credentials obtained by living with autism.”

My work matters, and paying me at a professional grade is justified by my hours living with autism, and teaching others how to live with theirs.  I should not have to change the Ms. in front of my name to Dr. for that to be true.  Should Harvard, or any University for that matter, wish to grant me an honorary credential, I won’t turn them down.  Until then, let’s drop the “Why don’t you just.”  I am an Autistic Entrepreneur, Educator, and Innovator and I have so much more to say.  I am worth the investment.  But in order to see me, you will have to think outside the limits you wish the world would lift away from your autistic child.

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One thought on “Why Don’t You Just…Be Like Everyone Else.

  1. This is how I feel as a person with ADHD/Bipolar II. My sister, who also had bipolar (plus schizoaffective) said it was the cruelest disease because you don’t get the automatic empathy a person with a visible physical illness does. In the mental health community, we have peer support specialist who certification and often have additional letters by their names based on continuing education. These are paid positions with their services being Medicaid/Medicare reimbursable. I wonder if this may be an option? I hope I don’t sound like the other “why don’t you just” in your life!

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