The Oppression of the Autistic Population

Autism is a very popular and media-friendly mental illness that has gained nation-wide recognition in recent years. While most of us have heard the term many times, it is first important to understand what autism is. An excellent definition can be found at the National Institutes of Health website:

Autism can look very different depending upon the individual it afflicts, and the disorder itself is hard to understand unless it is experienced in person, or personal examples are used. I have worked with autistic children as a line therapist for four years, providing in-home support to the children and their families. My job duties include anything and everything one could imagine: teaching self-help skills (brushing teeth, washing hands etc...), helping with homework, aiding in emotional processing, addressing challenging/destructive behaviors, teaching parents how to interact with and understand autism, and increasing social skills. On issues that may be somewhat confusing to those without experience with autism, I will provide concrete examples to enhance clarification.

Autism rates have been exploding in modern times; some believe this is due to increased awareness and professional training, while others believe the condition itself is spreading; which side is correct is a whole different topic and will not be covered in this paper. One federal organization responsible for some recent hype is the Centers for Disease Control and Prevention (CDC), which reported that "... the average ASD prevalence among states participating in the project (its ASDD prevalence research project) was 6.7 per 1,000 children in 2000 (6 sites) and 6.6 per 1,000 in 2002 (14 sites), or approximately 1 in 150 children" (Centers for Disease Control and Prevention, 2008). This compares to the belief that "[f]or decades, autism was believed to occur in 4 to 5 per 10,000 children," or about 1 in 2000 to 1 in 2500 children (Centers for Disease Control and Prevention, 2008). In any event, the rate of autism is growing, and needs to be addressed.

The state of Wisconsin is currently one of twenty-five states that mandate insurance coverage for services for autistic children. Aside from this, Wisconsin is one of a handful of states that provides funding for therapy for autistic children. The funding granted for autistic children is helpful in that it probably gives access to enough services to keep children out of the institutions when they are older, but much is left to be desired, and the well-being of autistic families is at the mercy of state social policy, rather than in the hands of the families themselves where it should be (Eagan, 2008, p. 8).

State policy has changed over the years. Funding first began in the early 1990's after a family claimed that the state must cover services for the condition as an early and periodic screening, diagnosis and treatment (EPSDT). Under this legislation, service providers to autistic children would bill the state's Medical Assistance program, which in turn could file for reimbursement of expenses with the federal Department of Human Services. However, the federal government decided to no longer provide reimbursement in April 2003, but after some discussion, agreed to reimburse sixty percent of the funding, as opposed to providing the matching funds as it did in the past. This new funding program was termed the Children's Long Term Support Home and Community waiver program (CLTS). At this point, when discussing the 2003-05 state budget, Governor Doyle proposed to cut funding for autistic services entirely, citing the state could not afford it given the projected budget deficit. This met strong disapproval from the autism community, and Governor Doyle agreed to provide funding, but at a reduced rate of about $13.25 million per year. The CLTS program, under which the state currently operates, offers three years of intensive therapy services (20-35 hours per week, including pay for therapist travel time), and other long-term support services to children (Eagan, 2008).

While Wisconsin does provide some funding for autistic families, this funding does not do nearly enough for the children themselves or the families, who have many other needs because of the presence of autism. The first way in which autism funding is oppressive is that in terms of a percentage the funding takes a very small piece of the pie in comparison with the total state budget. If one takes the annual funding of $13.25 million and divides it by the entire requested state budget of $28.973 billion for fiscal year 2009, one finds that funding for autistic families accounts for just .04 percent of the entire state budget (The State of Wisconsin, 2008). In hard numbers, this results in the fact that "...366 children were waiting for services under the CLTS waivers due to insufficient funding" in 2007 (Eagan, 2008, p. 6). Also, through personal experience as a line therapist, I have learned that many families can expect a three to six month wait between the time they apply for and actually receive funding. In sum, the coverage does not cover all the child's needs, and leaves out a significant group of children altogether.

How does a lack of funding lead to oppression in autistic families? Let me present two case examples. Experiencing autism firsthand can vary greatly from child to child. As with any other condition, it falls on a continuum. Towards the more severe end, I have one child who speaks one-word phrases here and there, is almost totally unaware of his surroundings, and whose actions consist mostly of running around, putting anything and everything in his mouth (he put a wild baby bunny he found once in his mouth), and "crashing," for lack of a better term, into nearby people and objects. The child lives with his grandmother, who is currently divorced; she gained custody because the child's biological mother had custody removed by Child Protective Services. He is so high-maintenance that she has to keep him within arm's length around the clock. He is eight years old but so severely autistic that he is unable to use the toilet, and instead wears a diaper. He is unaware of where to relieve himself, and should he not have a diaper on, would simply do so on the floor. The child also attends school, but only for ten hours per week because he is unable to tolerate a full day; for example, if he is tired, he will go to sleep wherever he happens to be. Grandmother's house is also in constant disarray because of all the clothes of her child's that she has to change; she may change his dirty clothes at least ten times per day. Clothes will be found all strewn about; toys or other random objects the child has dragged about may be on the floor; broken windows, doors, and other objects remain so for months on end because of financial reasons. If all this were not enough, the child will stay up anywhere from sixteen to eighteen hours per day, depending on how well his sleeping medication is working (autistic children often have a hard time sleeping), and keep in mind, he may be up and literally running around all the hours he is awake. The point is that grandmother's time is so fully consumed with caring for this child that financially, she is obviously very broke. She has no time available where she could work, which she wants to do because it gets her out of the house. She has mentioned to me that at the end of the month she may not be able to eat because she is waiting for county aid to come in the next month. She has been given $200 per month in the past for respite, but babysitters charge $17 per hour because of this child's high maintenance level. Besides providing additional funding for the autism, this family obviously needs additional great help because of all the side-effects of autism on the family system!

Towards the less severe and more functional end, I worked with one autistic child, who had an older brother with an emotional disability. This example is one that I would consider to be more representative of autistic families and what the average need might be. He is almost always hyper and filled with energy. When angry, he hits, kicks, or throws things, but this only happened once every three months or so. He might also run away, but he always ran to a different room in the house or the back yard. Interestingly, this child can spin on a merry-go-round for two hours and not get dizzy once; I have a pretty decent tolerance for dizziness and become dizzy after about thirty seconds! The child is very functional in that he has understandable language, has a handful of friends, and can play video games and do other things that most boys his age (12) can do. However, he has a very difficult time with academics, and is behind most people in his grade in most subjects. After working with the child for three years and seeing him make great progress, he was abruptly cut off from service because he met certain criteria according to the Wisconsin Functional Screen. Very basically, this document sets up certain criteria to bump children off of funding; in general, if a child seems as though he will not need institutionalization as an adult, he is removed from funding. This to me, is a way of oppressing autistic families in that it has low aims and does not value the child's and family's rights as human beings; they cannot reach their full potential because they do not have the financial means to do so. It is a struggle for the child just to stay below grade level academically with supports in place, so just imagine how the lack of therapy will impact his academic ability! He is only twelve and it will be six years until he is supposed to be able to support himself; by then, all or most of therapeutic efforts will have deteriorated to ineffective levels. Additionally, this child has speech difficulties in making certain letter sounds; as a line therapist, I have helped out with this, but the child really needs professional oral motor therapy, which costs more money that the family does not have. This child's mother has chosen to be a stay-at-home mom, while her husband works as an auto mechanic. While her child is able to come home after school and prepare himself a snack, possibly work on homework, or play constructively in an independent fashion, he has difficulty with memory and may forget to do very important things, like making supper or doing homework, unless he has a reminder. This family would still greatly benefit from some type of in-home support, like a therapist; the mom told me she is interested in working, but is afraid her child would not do well with increased levels of independence. Through talk over time, I learned the family's financial state is one such that they fall outside the levels of the state definition of poverty and do not qualify for state aid programs, but in my personal judgment, they would still greatly benefit from state aid. The lack of state help keeps this child's and this family's functioning down from where it could be.

These two case examples were presented to help a person without experience with autism to understand what the lives of autistic families can be like, and how such families would obviously benefit from a revision in state policy that would not cost that much money. Now, this paper will transition into more personal experience with oppression and autism, again using the two case examples already presented.

The most noticeable difference between the autistic population and us is the autistic person's difficulty with relationships. In general, most autistic children are highly resistant to new people and situations; some prefer to play alone and are adept at completely blocking out people who may be sitting right next to them. Fits of rage, physically destructive meltdowns, and running away are behaviors that can occur in response to something as simple as a new neighbor visiting, or a known person visiting at an unexpected time. This is not a hard rule, however, because two autistic brothers I work with talk to almost everyone and in general enjoy playing with new children. One an autistic child's resistance to social interaction can lead to oppression is that people who are aware of the child's condition may say to themselves, "Oh that child is autistic; he won't like interacting, so I'm not going to give it a try today." My professional experience from case example number two has taught me that a children's razor-sharp grip on being alone can be loosened if the child is consistently and appropriately challenged. Rather than not making friends, I believe that those children most resistant to relationships and new people can, in the long-term, at least form a small handful of relationships with a few close friends.

Another way that oppression occurs is by lack of understanding of the condition by teachers and how to work with it. Schools, even ones in the same district, vary greatly in their treatment of autistic children. In Appleton, Highland Elementary school is notorious for its mistreatment of autistic children. The child from case example number one was having a meltdown and was placed in a closet (the same happened to another child that went to school there), which is cleverly called a "Sunshine Room." In the first place, most meltdowns can be avoided if the person has experience working with autism, and in the second, while a child melting down does need to be separated from other children for his and their safety, a confining room can be made that is less stressful than a closet. For example, the child could be placed in a room where he could engage in intense sensory work which would help to relieve the meltdown; a dark closet only increases stresses and intensifies the effects of a meltdown.

Children in school systems, in general, tend to follow the attitude of the school administration and faculty. In case example number two, there is somewhat of a mixed bag. The child reports good days and bad days at school; there is a bully that gives he and other children a hard time on occasion; he has not really formed any meaningful relationships there, and from his mother's reports, the faculty at school are inconsistent in their treatment of the child. In case example number one, the child is so severely autistic that he cannot form any meaningful relationships with students; I did meet his special education teacher, and it seems that no one knows what to do with him, but she seems to be trying her best. Another teacher at this school was the one responsible for locking the child in a closet, and it seems that the child is regarded as a nuisance by most teachers, with the exception of the special education teacher. On the positive end of the spectrum, I have worked with two autistic brothers who have had a very positive experience with the school. I have met their special education teacher and a few other teachers, and they seem to look at the two boys in a very positive light. They know a ton of kids at school, and I have had several of their friends come up to me and remark how cool and funny they think the brothers are. Schools cover all ends of the spectrum in regard to their oppression of autistic children.

Autistic families themselves have the same value systems as average American families in general. Some are conservative, some liberal. Some are functional, some are dysfunctional. In relation to the autistic child, families value the most the ability to interact with their child and for their child to interact with other children in as "normal" of a way as is possible. One parent was quite upset at herself for not recognizing that her son had autism when he preferred to draw pictures of letters at the age of three rather than play a rough house game with dad. These families also tend to value the term "typical" over "normal." I think that this is because, again, the families want their child to be as much like other children as possible; the term "normal" implies that their child is "abnormal," whereas the term "typical" implies that their child is "atypical," implying that he is still a worthwhile human being who is just a little different than others.

The culture of this group is somewhat varied. Some families are very focused on how different and unusual their child's interests appear to others, and they clearly feel embarrassed and ashamed about it. Other families are much more positive and enjoy seeing all the progress their child makes; many families figure nothing can be done.

My personal belief about this group is that there is a lot of hope and progress to look forward to. Although autism makes it more difficult for a child to function in society, its exploding rates are forcing American and Western society to look at the problem and figure out how to integrate this population into different societal systems, such as the public school system. My experience has taught me that all of these children can make progress and that many can form friendships, relationships, and live at least semi-independent lives. For the more severe children, a satisfying outcome would be to keep them out of institutions and have them instead placed in group homes. My family and friends did not teach me any beliefs about this group, as autism was nothing any of us had ever experienced before. I would say that the media, such as the cartoons and other shows I watched while growing up, taught me to make fun of the mentally disabled in the public school system, or be afraid of those with more severe disorders. However, when going out with friends and bumping into the occasional mentally disabled individual, I never found myself or my friends taunting or taking advantage of this population.

As mentioned before, I have extensive skills and experience working with this population. I have unwittingly learned that it requires a lot of patience. Many people make the comment that I "must be a patient person" to work the job that I do. However, I never really thought about it that way because it came so natural to me. If a child is unable to do something that I am able to do, I never thought of him as a "moron." I always tried to figure out what it was that was causing difficulty for the child because I believe that all children strive to do the best they can under healthy circumstances. This strikes me as the appropriate way to address these types of difficulties, but apparently, this is somewhat of a rare attitude nowadays.

The only thing that makes me somewhat uncomfortable with this group is the way the child might interact with others. The child in case example number one, for example, grabbed a family's cookies and soda and spilled them all over when he got away from me at the park once. For me, this is a big negative experience because it helps to reinforce other people's negative views of this group and increases oppression, even though the child has no awareness of the inappropriateness of his actions. My desire for this group is to be accepted for what it is, rather than shunned for what it is not, so whenever autistic children move out in public, I want it to be a positive experience.

I have found working with this group to be a joy and privilege because of its eccentricity; I enjoy working with eccentric and unusual behaviors, and the most joyful part is helping that person to integrate successfully into society, while simultaneously helping him or her to retain his or her own individuality. Many people look at unusual behaviors and are completely baffled about what to do, but I have a sharp knack for knowing exactly what to do, and I am glad that I am able to do so. I take the strengths the child has and work with those; the child in case example number two is obsessed with playing soldiers both as a way of pretending and as a videogame. If he is going to form relationships with other boys his age, this is a great place to start because this is such a common passion for children his age. In some cases, a child may engage in the same behavior for months or even years, and when one is able to finally break the pattern and use the strengths the child already has in an attempt to integrate that child into the mainstream, that is when happiness and love for the job is found. This is the epitome of the strengths perspective of social work, and is really what keeps me motivated to do the job. I have been working this job for four years now and could not imagine doing anything else.

References

Centers for Disease Control and Prevention. (2008). Autism information center

frequently asked questions - Prevalence. Retrieved November 3, 2008 from http://www.cdc.gov/ncbddd/autism/

Eagan, K.P. (2008). Autism treatment (Wisconsin Briefs Publication No. LRB-08-WB-

14) Madison, WI: The Legislative Reference Bureau.

National Institutes of Health. (2008). The science of mental illness. Retrieved
November 3, 2008 from http://science- education.nih.gov/supplements/nih5/Mental/other/glossary.htm

The State of Wisconsin. (2008). Statewide Budget and Position Summaries. Retrieved November 16, 2008 from http://www.doa.state.wi.us/docs_view2.asp?docid=5847&locid=3.