The final grade is in and here I thought I would be lucky to pass the class with my absence of interest in coursework over the last few weeks...I managed to eke out what I thought was a mediocre paper. My topic statistics within Autism after reviewing several studies....and having first hand experience as a parent of with two children on the spectrum! - I thought easy paper but really it was the hardest I've ever written. :)
My grade a 30 out of a possible 30 points! This brought my gpa for the glass up to a 92.75. An A!!!!! Whoo hoo - thought I'd be lucky to get a C - and I attained an A!!!!
Here's the paper - read it! It's fairly good, rather bland in terms of scientific data but a good read nonetheless.
Running head: Autism
Living with Autism
E.P.( my full name removed)
PSY 325 Statistics for
the Behavioral & Social Sciences
Living with Autism
Many challenges face families living with a member who has a pervasive developmental disorder. Many studies prove that the face of Autism has changed over the course of decades. Incidentally, the odds of having a child afflicted with this neuro-psychological disorder are relatively higher than having a child with
another childhood disease. In the 1960’s the prevalence of Autism was rare at a
rate of one in 10,000 and four years ago, one in 166. Today, the odds have risen to an astonishing at a rate of one in 150.
The fact of the matter is that the public is looking for answers and there is heightened research. Many question Autism’s origins; however, the research is not leaning toward answers of why this disorder’s prevalence has risen. There is no substantial data to support a cause and even less data to prove a cure is on the horizon. However, most adults afflicted with this disorder are asking that no cure be found simply because that would mean there is something tragically wrong with them. Instead, they ask that we embrace them as creatively wired and socially challenged individuals.
Incidentally, parents with children afflicted with a pervasive developmental disorder have a myriad of questions but also tend to try anything to make their children with Autism better but even more so to assist them in becoming independent. The parents of children more severely affected are frightened that as they age and become unable to provide constant care to their children, these children will become unable to care for themselves.
A commonality among treating pervasive developmental disorders is the earlier the treatment the better and integrating social and behavioral therapies in treating the autistic child. These therapies are ever important simply because the therapies will assist in teaching the child how to successfully maneuver life activities but also repetition of such activities will in turn teach these children independent living.
Incidentally, the prevalence of diagnoses is not out of over diagnosis but more research and education on the varying degrees of these pervasive developmental disorders. Whereas in the 1960’s, the statistics said one in 10,000, the reason for the lowered demographics could very well be the parenting of that era. Mothers brushing a child’s quirks or tics under the rug out of fear of being deemed “refrigerator” mothers. The term refrigerator mother, coined by Leo Kenner in a 1943 paper, sparked several articles and books blaming a lack of maternal affection for Autism.
A refrigerator mother is cold, callous, non-nurturing, and most likely to produce children who have the same personality attributes. The key to the refrigerator mother concept is that these mothers produce children with similar personality attributes. A refrigerator mother would not produce a child afflicted with autism more so than a mother who is ultra-nurturing.
Over all, there is neither supporting data nor studies that prove the nurture vs. refrigerator theory. Yet, no matter the cause or provocation, the question remains the same, what will happen to these children as they age and grow in to adults. Only 28% of parents with normally developing children worry about their children’s future where as 79% of parents with children on the spectrum worry that their children will not have the ability to care for themselves as they turn in to adults.
As parents of children on the autism spectrum, worry about the everyday and whether or not autism children will grow in to independent adults, with adequate housing, employment, health, and educational experiences appropriate to their special needs. Yet, watching them grow, parents of children on the spectrum should know they are doing the best job possible.
The best job possible includes not limiting the child’s capabilities by accepting the diagnosis and allowing the child to escape in to their own world but teaching the child how to integrate successfully their world with the world of other children. This is not to say that parents of children with pervasive developmental disorders will take their creatively wired and socially challenged children and attempt to force them to become normal. Instead, these parents are attempting to help their children become less socially challenged in hopes to improve their quality of life.
These social challenges include but are not limited to poor eye contact, lack of knowing social boundaries, transition issues, among other tics that are deemed not socially acceptable. In addition to social challenges, children with pervasive developmental disorders have chronic physical ailments that interfere with activities of daily living. For instance, some parents feel the need to place their children on gluten-free diets out of a desperate desire to alleviate their child’s gastrointestinal issues.
Efforts to alleviate or reduce symptoms and make productive headway in terms of the physicality, social nature, behavioral, and educational settings means a possible elimination of certain settings. According to Carr and Hebert, “there are five areas in which behavioral approaches can be integrated with biomedical approaches” (2008, Carr andHebert). The five areas focused on in this study include, behavioral setting, behavioral strategies, behavioral intervention to maintain adherence to treatment regimens, single-subject methodology, and behavioral intervention as a coping mechanism. Varying degrees of desensitization of children with pervasive developmental disorders is especially helpful because it improves the quality of life for the child and the family living with the child.
Many parents of children with this disorder worry about sending their child off to school in hopes that the social setting they are subjected to will not exacerbate their sensory issues. Therefore, parents of children with pervasive developmental disorders tend to plan their child’s day in addition to sending them to school with transition objects that will assist them in the multitude of transitions the experience in their school day. Much like the Peanuts character, Linus and his blanket, Garrett, carries his transition objects in one hand and this assists him to feel grounded throughout the day.
Research does promote the idea that a blanket or in Garrett’s case miniature fish keep children who require transition objects grounded and more focused on their schoolwork. Albeit the transition objects are distracting to other children in the classroom, these keep Garrett focused on his tasks. In addition to partaking in translational research of which, his teachers and care providers can study his behaviors while treating him with different behavioral approaches. This concept is not new but will ultimately assist researchers in creating newer behavioral approaches for other children on the spectrum. In addition, translational research helps to determine what treatments work and what treatments do not work, for not only Garrett but also other children on the spectrum.
Behavioral interventions and coping mechanisms for outside the home aside, families of autism have many obstacles to overcomeinside the home. According to the Harris Interactive study, families of autism have a tendency to partake in sit-down dinners every day of the week, 44% as compared to 32% of families with typically developing children. Incidentally, this only proves that Autism homes are more family oriented which, is a positive in a world of negative obstacles.
Families of children with autism do not receive additional assistance in their homes to face the day to day with their children. The Harris Interactive study proves that activities of daily living take longer for families of Autism and this is most likely due to exacerbation of symptoms including but not limited to non-adherence on the part of the child with autism to schedules. This leaves other family members wondering how to keep their sanity and sometimes wondering how to care for the other children of the family.
In addition to worry about caring for other family members and experiencing a great beetroot of additional stress on family life, families of autism, have a greater need for financial planning. Yet the statistics of the Harris Interactive study show that even though the concern is there, there is little to no time to plan for a financial crisis with a striking number of 50% of parents of autism planning for future financial matters (2008,Harris Interactive). The numbers are even more striking and support a major contrast to the concerns for a stable financial future for families of autism. Yet, there are several causes of financial strain on families of Autism.
The leading cause of financial strain is the rising medical costs, as most insurance carriers do not cover treatment and services for people living with Autism; therefore, parents must pay for such services. For instance one family in
Connecticut and a close friend of this author, reports that Cigna, a major national insurance carrier refused to pay for her three-year-old son’s speech and language pathology service simply because there was no data to support medical necessity. Medical necessity as reported by the policies and provisions of the plan stated that in order to prove medical necessity the practitioner must prove there was a loss of speech and a need for regaining previous speech.
Incidentally, the child had never spoken prior to the need for speech and language pathology and therefore the insurance carrier refused coverage of such services for the child. Such is the case for many families of Autism, which makes out-of-pocket costs rise, as treatments offered are not covered by insurances. Thankfully, the United States Senate is in the process of reviewing Autism insurance reform. The current senate has a bill on the table titled Senate Bill 301, which would require health insurers to cover medically necessary, evidence-based treatments for pervasive developmental disorders (Autism), including but not limited to Applied Behavioral Analysis (ABA).
Although this bill has not yet been passed, this may very well alleviate some financial strain on the 50% of families of autism who have not yet made efforts to plan for their children’s financial futures. In addition, it will allow time for families to review other areas of their financial futures as well as ensure them the ability to focus on treatment that will assist in their children’s overall life experiences and maybe heighten their educational experiences.
Parents of children with autism are more concerned about their child’s educational experience than that of any other parent simply because an individualized education plan that ensures a safe and appropriate learning environment conducive to the child’s learning level is ever so important. “Two out of three parents of children on the spectrum say that their children have slightly and much lower literacy and math skills than their peers” (2008, Harris Interactive). This proves that there is a higher demand for educational resources to assist in bringing these children to a higher level of literacy and math skills.
Social, math, literacy, behavioral interventions, and alternative medicines are important in families of autism. The treatment and care for these children is overwhelming according to the studies reviewed and personal experience. Parents of children with autism do not ask for sympathy or even empathy but they do expect a level of respect especially when additional services are required for their children. Incidentally, ideation of children being passed through to the next grade level without being at or above benchmark scores was a cause for major concern in the Harris Interactive study. An average of 48% of parents of children on the spectrum indicated they were dissatisfied with the quality of their child’s educational experience as opposed to 26% of typical parents.
The reason for the differentiation in the scoring is most likely because the major theme throughout the Harris Interactive study is that parents of typically developing children do not have need for these concerns; therefore, further proving a need for additional financial, emotional, educational, medical, and behavioral support for families of Autism.
In conclusion, the fact of the matter is that one child in 150 children has a pervasive developmental disorder, that has a family who is concerned for the child’s future. This family is very much the same as any other typically developing family but very different from a typically developing family. No one study looks for the cure or the source but looks at the interventions and ways in which we as a community can afford a child of Autism the best possible treatments in addition to quality of life.
Aron, A., Aron, E. N., & Coups, E. (2008). Statistics
for the behavioral and social sciences: A brief course. (4th
ed.). Upper Saddle River, New Jersey: Pearson Prentice Hall.
Carr, E., PH.D, Herbert, M, M.D., PH.D. (2008). Integrating
behavioral and biomedical approaches: a marriage made in heaven. Autism
Advocate, First edition, Retrieved 01/05/2009, from
Harris Interactive, (2008). Living with autism study.
Retrieved 01/05/2009, from http://www.easterseals.com/site/DocServer/Study_FINAL_Harris_12.4.08_Compressed.pdf?docID=83143
Herbert, M (2008). Treatment guided research, helping people
now with humility, respect, and boldness, . Autism Advocate
, Retrieved 01/05/2009, from http://www.autism-society.org/site/DocServer/Pages_8-14_TGRI_.pdf?docID=10460
Tags: Autism Statistics Eunice Crankyponts