I am an autistic woman who has lived both in poverty and as a middle-income person during my adult life. I am noticing how self-advocacy is typically geared toward middle-income status. This could be problematic since many autistic adults live in poverty. Based upon my experience I have come to realize that middle class self-advocacy works fine if in fact you are a middle-income person, but doesn’t work well if you are a poor person.
I will explain this more using an example from my life as a poor person versus a middle class person.
Dental Experience as a Poor Person
I once had to live on pain pills for six weeks with infected wisdom teeth because no dentist in my area took the state medical insurance poor people rely upon. My only recourse was to visit the hospital emergency room every third day to get narcotics. Finally, the county health nurse found a dentist that would take me.
I had to go off narcotics to drive over an hour to the place that had an opening for a state insurance patient. It was summer so I had my kids along – all grade school age. After using money I had been saving for back-to-school supplies for my children for gas to drive to this far away appointment, they wouldn’t see me because of their policy of no unattended kids in the waiting room.
I had to put off paying a household bill the next month so as to have gas money to repeat the trip to this out of town dentist and have money to pay a babysitter. During the appointment I got scolded and told it was irresponsible for having waited so long to get in for care. It took several months to get rid of the tooth infection that had taken over my body. State insurance is great in theory, but not always in practice.
During the six weeks of visiting the emergency room to get narcotics every three days I got reported to child welfare for suspected drug abuse and thus suspected of not being able to take care of my children. I also was reported to the welfare department because I was drug seeking and avoiding employment as evidenced by repeatedly asking for a medical work excuse. I actually was attending work as I couldn’t afford not to, but needed the work excuse for my college field placement (not even paid work!) as I wasn’t able to manage both paid work and the two days per week field placement.
Dental Experience as a Middle Class Person
Recently, I began experiencing dental pain. It is now several years later, my children are grown and living on their own, I have graduated from college (twice in fact – undergrad and then later, a master’s degree), run my own business and work part time for a non-profit organization. I no longer have the state medical insurance meant for the poor and disabled. I now have regular health/dental insurance that working people can purchase.
Being a middle class person and having middle class insurance made all the difference in how I was treated. I was able use a list of insurance policy approved providers to find a dentist close to me who could see me that very same day. I did not need to go for several months resulting in the last six weeks of needing narcotics for unbearable pain from untreated infection.
While in the waiting room, I observed a mother coming in with a preschool youngster. The mother explained to the receptionist that her babysitter had canceled so she needed to bring her 4 year old along, but the child was well able to entertain herself and could be trusted to stay in the play space area when she was in the dental chair. The receptionist replied that she would keep an eye on the child while the mother was in her appointment saying there wasn’t too much anyone could do when no child care was available.
It is easy to see the differences in my two dental experiences. Initially, I thought it was due to the type of health/dental insurance I had – state insurance issued to the poor or insurance purchased by a working person – but instead, upon closer contemplation, I came to see that even though type of insurance played a role, a bigger factor was societal attitude toward people using the state insurance. Poor and disabled people use an insurance that not only reimburses dentists and physicians at a lower rate than other health insurances, but also invites the attitudes and assumptions about the poor and disabled to surface. Poor people are thought to be lazy, irresponsible and with all sorts of personal character flaws,
I used the same self-advocacy skills in each situation – clearly asking for what I needed, giving supporting reasons why my request was valid. I was clear, calm, polite and rational in all of my transactions. This set of skills served me well as a middle class person seeking dental care, but failed miserably in terms of outcome when I was a poor person. I believe the main reason middle class self-advocacy doesn’t work as well for poor people as for middle-class people is due to society’s perception and attitude toward poor people. Based upon this, I am now wondering if we need to rethink self-advocacy in the field of autism.
Is there (not should there be because of course there shouldn’t be) such a thing as self-advocacy skills based on economic class?
Are we teaching middle class self-advocacy to a group of people who, due to their disability income, often are poor once they reach adulthood?
Will the self-advocacy skills we teach our youth today serve them well in their adulthood?
I have these and many more questions, but no real answers at this point in time. I am raising the issue in hopes of starting a conversation and inquiry into this matter. We live in an era where transition programming for teens and young adults with autism is very much needed. As these programs are developing we need to be mindful of teaching middle class skills to individuals who may live in poverty during their adult life.
It would be wonderful to change societal attitudes, but that takes generations. It would be wonderful to change the poverty factor for those living with disabilities, but we live in a political time where decreasing income, programs, and all sorts of helpful things for disabled people have become the norm. So, in reality, it would likely be more expedient to change the way we teach self-advocacy. Even though it would be politically incorrect to have two classes in the same transition program –
Self-Advocacy for the Poor and
Self-Advocacy for the Middle Class
– it would likely be practically helpful since a huge part of self-advocacy is learning to interface with society.
I think someone needs to figure out self-advocacy for poor people because it must be something very different than self-advocacy for middle class people. When poor I did the same self-advocacy, but it was seen as being a leach, mooching off the system, expecting something for nothing, wanting free handouts and being too lazy to work. It was assumed I was drug seeking and my ability to parent was brought into question.
Of course, this is morally wrong! We cannot run two classes in our transition programs – Self-Advocacy for the Poor and Self-Advocacy for the Middle Class. If you think about it a bit, it really doesn’t make sense that we need to come up with content for a Self-Advocacy for the Poor class. What would be different in the curriculum? Why does clearly asking for what is needed, giving reasons when needed, in a clear, calm and polite manner be the skills needed for middle class people and those same skills not work for poor people?
And yet, at the end of the day, it is what it is – society interfaces with poor people based upon an entirely different set of assumptions and resulting behaviors than it does when interfacing with middle-class people.
Note: This essay uses sarcasm. It proposes something – Self-Advocacy for the Poor – something the author really does not believe in as a way to get people to think about the bigger picture – that of societal differentiation of treatment for the poor versus the middle class based on negative stereotypes and assumptions. Please consider what impact that may have for poor people when teaching self-advocacy in transition programs. Ultimately, think of the impact on autistics using self-advocacy and that economic status plays a big role in outcomes when an autistic (or any person) employs self-advocacy strategies.
BOOKS AND DVD BY JUDY ENDOW
Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press.
Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press.
Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2009). The Power of Words: How we think about people with autism spectrum disorders matters! Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals With Autism Spectrum Disorders. Shawnee Mission, KS: AAPC Publishing.
Endow, J. (2010). Practical Solutions for Stabilizing Students With Classic Autism to Be Ready to Learn: Getting to Go. Shawnee Mission, KS: AAPC Publishing.
Myles,, B. S., Endow, J., & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment. Shawnee Mission, KS: AAPC Publishing.
I am not sure if I have autism but my 4 year old does. In trying to stay in a place where he could get access to good schools and services, I am unemployed. No one wants to hire me on my part time schedule but there is noone I can entrust with the care of my child. Being a mother of two young kids took a toll on my dental hygiene and I got the worst pain of my life where I would hit my head with my fist and no pain killer could touch the agony. I went to a walk in teaching center where they made me come back twice until they agreed to see me, only to do many xrays and then give me an extraction appointment for 2 months later. I asked them what about the pain and they didnot care. I was then sent on a field trip to many different dental surgery clinics that should have taken my insurance until pne saturday morning, at 8 am in the bronx, a doctor who wasnot a dental surgeon knocked me out and took out the infected tooth along with a non infected one just for the heck of it. My struggle to get my son his therapies is still an ongoing story.
I always learn so much from you posts. Thank you for sharing your experiences and wisdom.