Jargon, Titles, Mistakes and Autism
Mood:  a-ok
Topic: Jobs
Most of my real life friends here know that my day job involves working with children on the autism spectrum. I have been working with kids of all types since Jan. of 2000, and kids with autism and/or other 'special' needs since about June of 2000. My work with these great, interesting and sometimes baffling kids has gone under many titles but the job itself has not changed. I have been a facilitator, a tutor, an ABA tutor, a 'companion', a shadow, a 1:1, an Aide, an interventionist, a behavioral interventionist, a therapist, an in-home therapist, and the latest is inclusion facilitator. For the purposes of this blog and because it is the most offensive sounding title to me, I will use the term "interventionist" to refer to my job title.

No matter the title, people like me who do this much, needed yet very underpaid and under appreciated job that involves a lot of driving, usually zero health insurance and dental insurance and spending our own money for supplies and extra training, work in public and private schools helping a child navigate the complexities of the classroom and playground designed for the "typical" child, whatever that actually is. Then after school a lot of us also work inside private homes doing one or several types of therapies/interventions and helping coach kids through the "play-date." (the contemporary jargon for two or more kids going to a friends house to play).

Over the course of the almost 9 years I have been doing this work, I have almost quit several times over. None of my burn out ever had anything to do with the actual job of working with these amazing and challenging kids. Sometimes there may have been minor complications with parents, but in almost no instance did any parents make me want to quit either. Most of my, and after talking with many other "interventionists" their reasons for almost leaving or leaving the field had to to with how we as a group and as individuals are often treated and looked at by the public and private bureaucracies involved in the special education arena. Depending on the state (and/or country- I started my work in London, UK) and in some cases even the individual school district, the amount of bureaucracy and paperwork and other headaches one has to deal with changes.

At the moment I live and work in Southern California where most "interventionists" pay comes from middle-men(and women but you get what I mean) called NPA'a (Non Public Agencies) who take a huge slice of the fee and then hire and pay the interventionist a tiny portion of what the school district or regional center pays the NPA. In California, autism has created a cash cow industry that spawns new NPA's every day or at least every week. Some of these agencies, really desire to help and as businesses they also need to make money. I do not disagree with the idea of anybody making money, even large amounts of money. Money is extremely useful. But there are an increasing number of agencies who seem to not really care about the population they serve and are just exploiting both the families affected by autism and the "interventionists" who work with them.

None of the agencies I work for at the moment are just in it for the money I am happy to say and I need to say now. Not just because I don't want to jeopardize my job, but because I want to make it clear that not all NPA's are bad or evil or up to no good. But even the good agencies do not always treat us the "interventionists" as if we are human and can sometimes expect us to be super-human. Increasingly even the better agencies have stopped offering any benefits at all. Working in special education is extremely stressful and working with children who often have suppressed immune systems also exposes us "interventionists" to all kinds of bugs so we need to be able to see a doctor regularly, however most of us do not because we are uninsured or under-insured and can't afford it.

I used to have insurance but my hours got cut at the agency which provided my insurance and I could not afford to pay the COBRA rate so I am now uninsured. I have GI issues, scar tissue (from old bleeding in my brain from a head injury) and migraine headaches so I am not able to get an individual insurance plan. I am still one of the lucky ones though because I do not have kids so I am not also responsible for providing them with health and dental insurance. Many people who work with kids on the spectrum are uninsured and many of them have children of their own, some of them are also single parents.

To top the zero health insurance problem off, as an "interventionist" whether an employee of an NPA or an independent contractor of an NPA, we get no sick leave and no paid vacation so if we do get sick or if we have children and our children get sick and we can't work then we don't get paid. If we do have health insurance and the insurance is contingent on average number of hours worked a week, then not only do we not get paid for absences due to illness, but we endanger our health insurance and other benefits.

The other issue that is extremely stressful for "interventionists" is that if anything goes wrong, regardless of whose actual fault or responsibility it is, then we are the ones who take the fall. I am not saying that "interventionists" never make mistakes or that there are no bad "interventionists" out there. We do mess up and there are some terrible and unqualified people working with kids who shouldn't be. But this is an issue in any profession and there will always be unqualified people working in any field.

However, most of the time, the mistakes are not those of the "interventionist." Some of the mistakes are grossly negligent and related to safety issues for family members and the "interventionist" when we work with aggressive children. And some of the mistakes are accounting or payroll or logistics errors that can directly effect when an "interventionist" gets paid. If for example I work and nobody at an agency told me there was no funding for the days I worked and I submit my time and then I am paid for it because my supervisor failed to communicate to me that there was no funding and then the accounting/payroll department doesn't catch the mistake right away and issues me a check, I should not have to be told to submit new paperwork a month after the fact. I and fellow "interventionists" should not be forced to work in unsafe environments with aggressive kids without support. That is how I ended up with my second severe concussion.

I and some of the "interventionists" while poor to almost poor are still making better wages than any interventionist starting out today. Recently while researching agencies for an acquaintance, I discovered that most NPA's start at $10-$13/hr and offer no benefits. The school district is paying almost 3 times that amount an hour for the "interventionist. Yes, agencies have operating expenses, but still there is a huge profit  to be gained by the owner of any NPA. And from talking to parents who have had the misfortune of having a poor NPA provide their child with "interventionists" who show up intoxicated if they show up at all or who fall asleep on the job or worse who are not properly trained for the job because offering somebody $13/hr and zero benefits to do demanding work that requires a lot of energy and the ability to think fast and creatively and stay in the moment is not going to attract any people with those skills, one can only conclude that an increasing number of NPA's are only in the autism therapy/education business to make large amounts of money at the expense of children and families, families who are already overwhelmed and stretched to the limit financially from dealing with the autism diagnosis, paying out of pocket for therapies and paying for legal battles with school districts so that their child gets the education and therapy mandated by federal and state laws.

Don't misunderstand me. I am not complaining about my job. I love my job. Since I began working with children in 2000, my art and writing have thrived. I in sense put my film making ambitions on hold to work with kids and pursued other less demanding and expensive creative pursuits. I originally moved to L.A. to get back into film and I do still desire to do that. But so many parents have asked me to continue working with their kids, that I am torn. I talk to other highly skilled, but burned out "interventionists" and they too often think of leaving this field for other careers. My family begs me every week to quit working in this filed because of the toll it has taken on my health and well-being. It's just not easy to say good-bye to. Ultimately I'd like to translate my personal experiences into a film or two. The screenplay I am currently working on involves a character who works as an "interventionist" and therefore at least one character who is a child on the spectrum. But anytime an agency makes a mistake or I or an "interventionist" I know gets blamed for something that isn't our fault or I have a tooth ache, then it becomes just one step easier to quit.

I suspect that in the next year or two I will no longer be working in special education. I will always volunteer and help out. Maybe I can build autism awareness through some of my creative endeavors but unless working conditions improve and some of the layers of bureaucracy aren't cut, I and others like me will no longer be working with children. And that's sad because these kids, these families need quality people who have their best interests in mind and really want to help kids and families by working with them so their kids can really develop to their full potential.

I do care. Like I said it will be hard to leave once the time comes. But unlike what some people think of me for working in this field, I am not a saint and I need to start taking care of myself as well as others.

If you want to help, please write, call, fax or email your government representatives and school district officials. You can learn more about autism and related issues online at autismpeaks.org. Here also is a perspective about autism from somebody who is on the autism spectrum: don't cure autism now .
You can also find all kinds of information by entering the word 'autism' in the search engine of your choice.