Abstract

Modern disability theory is based on non-deficiency based models of disability. However, progress in the construction of disability theory outside medicine may have outpaced the uptake of new paradigms of disability by health care professionals. Incomplete rejection of deficiency models of disability is expected by disability scholars and activists to routinely occur in health care scholarship and settings, thereby curtailing the influence of disability studies on the daily lives of individuals both with and without disabilities. Although this anticipated theoretical gap is frequently noted, it has been less often empirically examined. Using data collected from a survey of parents and primary caregivers with autism, this article employs the case of autism to examine the manifestation of non-deficiency based models of disability in health care settings and interactions. The results of the study indicate some uptake of non-deficiency based models of disability.

Introduction

Modern conceptions of disability tend to involve rejection of deficiency models of disability, particularly the so-called medical paradigm of disability. This differentiation created sufficient philosophical space for both effective articulation of disability studies and development of rights based disability policy (Jeon and Haider-Markel 2001). Over time, however, progress in the construction of disability theory outside medicine may have outpaced the uptake of new paradigms of disability by health care professionals. Incomplete (at best) rejection of deficiency models of disability is routinely anticipated in health care settings (Shakespeare 2006). Such an ideological gap, when present, curtails the influence of disability activism and policy on daily lives. Although this gap is frequently noted, it has been less often empirically examined.

This article employs the case of autism to examine the presence of non-deficiency based models of disability in modern health care. The core research question of the study is: Do the lived experiences of individuals with autism and their families with health care systems demonstrate uptake of modern disability paradigms by health care professionals? Consideration of this question sheds light not only on the uptake of non-deficiency based models of disability, but also on potential mechanisms of reducing misunderstandings between academic disciplines, activists, and other individuals involved in public issues related to disability.

Literature Review

Disability studies and activism frequently proclaim "nothing about us without us" (see for example Scotch 2001 or Shapiro 1994). Typically this mantra references ongoing struggles for inclusion on the part of individuals with disabilities in all of society's infrastructures, particularly those involved in socio-political discourse and decision-making. In order for this vision to be fully realized, individuals without disabilities should be both aware of and, where possible, included in, discourse originating in disability studies scholarship and disability activism. After all, unintentional discrimination is the anticipated result of disability scholarship and activism focused exclusively on the voices of individuals with disabilities. From there devolution into counter-productive identity politics routinely dismissed by policy arena hegemonies becomes all too possible.

Implications for Disability Studies and Individuals with Disabilities

In the absence of involvement in modern disability discourse, those unacquainted with disability studies remain less likely to move beyond personal tragedy narratives of disability (Barnes and Mercer 2003). This issue is especially vital in the case of parents of children with disabilities and health care providers. Those working in health care risk misunderstanding rejection of non-deficiency based models of the medical model of disability as (more or less) unrealistic rejection of health care information, education and services.

Partially independent clarification of misconceptions about disability by disability studies is possible and, arguably, necessary. Nevertheless, to the extent disability scholarship persists in an exclusive focus on creating a self-determined people(s) resolutely distinct from other scholarship addressing disability, gains achieved will likely focus on ensuring functionality as opposed to the more promising and encompassing goal of supporting capabilities (Nussbaum, 2006). Initiating dialogue with health care scholars and practitioners represents a promising (albeit perhaps tiresomely diplomatic) responsibility of disability scholars and activists. Such dialogue is, of course, challenged without full recognition of reasonably rational personhood of all parties. Therefore, some understanding of the goals and purposes of non-deficiency based models likely represents a necessary condition of joint progress toward healing relations between individuals with disabilities and health care professionals.

Furthermore, in the absence of significant uptake on the part of the healthcare community, disability cannot transcend the problematic in its context (Reinders 2000). Such problematization of disability continually puts individuals with disabilities at risk of increased negative effect of disease due to a misplaced focus on the core characteristics of their disabilities. Given the extreme time constraints faced by the vast majority of health care providers and the typically narrow functional focus of health care scholarship, such essentialist focus on disability is not only politically objectionable but also tends to mask true threats to the health of individuals with disabilities.

Ideally, health care professionals share intimate and potentially life-altering relationships with their patients. Such intimacy is difficult to achieve in a context of suspicion and resentment. To better understand how the differentiation of disability studies from other academic scholarship about disability manifests in society, a more complete understanding of the level of revealed uptake of modern disability paradigms in the practice of health care is necessary.

Implications for Health Care Service Providers

Positive involvement of individuals without disabilities in unfolding disability theory depends on a rapprochement between disability studies scholarship and others who work professionally with disability. These professionals include academics and practitioners in fields that write about disability from outside disability studies including medicine, rehabilitation, and psychiatry. These fields were forged in paradigms of disability conflating disability with disease (Smart 2001). To the extent these understandings of disability remain influential, comprehension of disability by health care community — even the truly medical aspects — becomes immutably curtailed. As a result, access to the fundamental human right of appropriate health care remains incomplete for individuals with disabilities even in the all too rare circumstance of available and affordable healthcare. Such conditions violate the most basic principles of Western medicine.

Prevailing paradigms of disability are meaningful not only for those who study disability, but also those engaged in health care provision. It is highly likely that any fundamental difference in conception of disability makes doing jobs in health care more difficult as it would tend to impede effective communication between health care practitioner and patient. Without effective communication, provision of even the most basic health care services becomes challenging. Furthermore, to the extent differences associated with a disability create a need for a treatment protocol, successful treatment is understood as requiring consideration of "the individual characteristics of the child and that child's family in order to define meaningful treatment goals and strategies to move toward them" (Thomas et al 2007, 1902). In the United States, securing such care has proven difficult for individuals with autism. A national survey indicated that a third of all children with autism had difficulty gaining access to appropriate specialists (Krauss et al 2003).

Representatives of the health care profession have expressed a desire to create more inclusive health care settings. The American Academy of Pediatrics standards of care for children with autism recommend a family centered approach (Ruble et al 2005). Deficiency based impressions of disability could exist in tandem with a family centered approach. However, this could only happen if individuals with autism and their families accept or put up with expressions of deficiency based understandings of disability. Focusing on the individual with a disability and his or her family implies concentrating on context and individual experience, which fits more naturally with non-deficiency based models of disability.

Finally, an important implication for health care providers and health care settings is the likelihood of substantial economic savings as a result of adoption of a non-deficiency based model of disability. Community based settings are routinely found to be generally less expensive in the aggregate (Johnson 2000). Also, miscommunication and misinformation resulting from understandings of disability fail to recognize the importance of the individual in creating the potential for misplaced time and energy on the part of health care providers. For example, one study found that children with autism have higher mean annual visits to their primary healthcare clinic, almost twice as many visits to their pediatricians, and almost three times the rate of inpatient hospitalizations that their neurotypical peers (Croen et al. 2006). This is in spite of the fact the vast majority of individuals with autism are just as physically healthy as their neurotypical peers.

The Case of Autism

Autism is a neurological difference of largely unknown etiology. The observed characteristics attributed to autism vary substantially between individuals. As a result, autism is considered a spectrum condition. The spectrum is generally described as a continuum spanning from low to high functioning autism, with the so-called high end of the continuum sometimes called Aspergers Syndrome. Typical differences associated with autism tend to be in the areas of communication, social interaction and responses to environmental stimulation. This diversity makes autism an excellent vantage point from which to study inclusion of individuals with disabilities.

The population of identified individuals with autism changed dramatically over the course of the last few decades. Initial descriptions of autism in the 1940s characterized it as a rare and profoundly limiting condition more often than not co-extant with mental retardation affecting 1 in 10,000 individuals. During the 1990s, the identified population of individuals with autism transformed into a highly variant spectrum disorder anticipated by some estimates to affect up to 1 in 100 people in the near future (Antonetta, 2005). The prevalence of individuals with disabilities has generally increased. Autism's augmented pace of growth would be expected to highlight the implications of changing populations on disability policy.

Finally, autism is representative of the general population of individuals with disabilities because of the changing expectations and experiences of young people with autism as compared to generations who came before them. Inclusion of children and young people with autism is far from complete. Nevertheless, the current generation of young people with autism tends to live much more community based lives than people with autism did in the past. Since advances in public policy and disability activism are gradually creating more inclusion of individuals with disabilities, this element of the experiences of individuals with autism is also reflective of those of the larger population of individuals with disabilities.

Method

Examining information about the observed behavior of health care practitioners in the context of disabilities demonstrates uptake of non-deficiency paradigms on the part of health care practitioners either at the level of professional norms, individual opinion or both. Data for this analysis comes from the "Autism, Health Care and Public Policies: Experiences of Families with Healthcare Systems" survey. This survey was modeled after the Participation and Activities Limitation Survey of Statistics Canada as well as previous surveys conducted by the author of parents and primary caregivers of children with autism living in Missouri and British Columbia. The survey includes both closed and open ended questions focused on the interactions between children with autism and their families with health care professionals. Survey questions can be found in Appendix 1 of this article.

To recruit participants, snowball sampling with multiple entry points was employed. Because autism represents a rare population with embedded issue networks, purposive sampling methods tend to produce more comprehensive participation on the part of the target population. As a result, the data collected is expected to be more representative of the range of experience families with children with autism than might be the case using random sampling techniques. In creating the list of entry points, effort was made to identify and contact all autism oriented groups operating in Washington and Oregon. Issue elites were also identified and contacted using appearances in the local press and at stakeholder meetings.

Survey delivery was primarily electronic (though paper surveys were also used, if requested). In the interest of maximizing participation, respondents were not required to answer every question if they did not choose to do so. Respondents did not have to complete the survey at one sitting, but were only allowed to fill out the survey once. The survey was designed to take approximately 45 minutes to complete.

Survey responses were collected between October 2006 and May 2007. Participation was deliberately limited to people living in Washington or Oregon State. Parents with more than one child with autism were asked to answer the survey in light of their experiences with their child who was first diagnosed with autism. The resulting data base was analyzed both qualitatively and quantitatively.

Findings

Respondent Characteristics

Three hundred and twenty-six parents and primary caregivers of children with autism completed the survey. Since the site recorded 563 visits, this indicates a response rate of at least 58%. The actual response rate may have been somewhat higher given that it is possible for an individual to visit the site more than once while only choosing to take the survey during a second or third visit or to pause while taking the survey and return to finish during a later visit. Eighty percent of respondents chose to answer all of the questions, while the remaining 20% declined to answer at least one of the optional questions.

Ninety-seven percent of responses came of biological, adoptive or foster parents. Most of the time (82%) responses referred to experiences with sons. This 4 to 1 gender distribution is in keeping with what has been observed in the population of individuals with autism. Despite the anticipated genetic component of autism, 65% of respondents indicated that they had no other family members with autism.

The families from which responses came appeared representative of the geographic area from which the sample was drawn, the Pacific Northwest. The majority (79%) of respondents described the communities in which they lived as either urban or suburban and 72% indicated that at least two (2) adults currently resided in the household. Family size also appeared relatively typical, with 31% reporting one child under the age of 18 in the household and another 40% reporting two. Approximately half of the families' income for the year ending December 31, 2005 fell between $40,000 and $100,000, with 19% earning below $40,000 and 7% reporting an income greater than $150,000.

General Impressions of the Health Care Community

Responses suggested parents and primary caregivers could not or did not depend on members of the health care community for a core medical responsibility — diagnosis of disability, disease or difference. Whereas 44% of respondents reported suspecting their child had a developmental difference prior to the age of 18 months, only 9% received a formal diagnosis by that point. Only 22% of respondents indicated that a family physician or medical specialist was the first to mention autism as a potential diagnosis. Even though most families had no prior direct experience with autism, a parent or other family member was the first to suggest the diagnosis 37% of the time. One respondent described dissatisfaction with this experience by writing, "general practitioners need to be more aware of the very early signs of autism…I diagnosed my son myself, which should not have happened."

Perhaps it is unsurprising, then, that only a minority of the parents and primary caregivers applauded the quality information about autism they received from medical professionals. Parent and primary caregiver perceptions of the quality of different sources are shown in Table 1 below.

Table 1: Evaluation of Sources of Information About Autism
 ExcellentGoodSatisfactoryNot Very GoodTerribleDon't Know
Family Doctor6%13%20%35%23%1%
Medical Specialist22%28%20%15%9%6%
Government Agencies2%7%17%28%31%14%
Private Organizations17%31%25%10%4%14%
Schools8%22%26%25%17%3%
Internet40%41%15%2%0%1%

However, when asked how informed about autism they believed their primary care physicians were about autism, 18% rated them as very informed and 43% reported them as somewhat informed. This discrepancy in proportion suggests difficulties in communication between families and primary care physicians.

Parents and primary caregivers did not believe their children with autism were particularly disposed to dislike interactions with members of the health care community. Seventy-seven percent of respondents reported getting their child to go to the doctor's office was no more difficult or easier than taking them other places. As can be seen in Table 2 below, the perceived response of the child varied somewhat depending upon whether or not the primary care physician and office staff treated the child differently than other children. In particular, a child was far less frequently observed as being particularly positively responsive to office staff when no accommodations or changes were made in response to the child with autism.

Table 2: Perceived Response of Child with Autism to Elements of Health Care Facilities
Response RatingPhysician with ChangesPhysician without ChangesStaff with ChangesStaff without Changes
Much Better Than Other Unfamiliar People16.7%13.1%2.3%6.1%
Somewhat Better Than Other Unfamiliar People25.8%29.8%22.7%9.1%
About the Same as Other Unfamiliar People43.9%50%50%78.8%
Somewhat Worse than Other Unfamiliar People7.6%7.1%11.4%6.1%
Much Worse than Other Unfamiliar People6.1%0%13.6%0%
I Don't Know0%0%0%0%

Even so, 56% of respondents indicated they had had a negative experience with a health care provider as a reaction to his or her autism. Rates of reporting negative experiences with health care providers did not vary on the basis of family income, gender of the child, or type of community in which the family lives. However, when the parent reported that the health care provider treated their child differently from others, this percentage reporting negative experiences climbed to 63% (as compared to 53% of parents perceiving a difference in interaction with the child and 55% of those who were unsure). This finding suggests that observed responses to a child with autism on the part of members of the health care community were not ones that tended to make the child and his or her family feel more a part of society.

When asked specifically whether the changes in interaction on the part of staff or primary care physician helped their child, 50% of respondents reported that they did not know. The findings suggest the respondents were unusually baffled about the changes in interaction, since this percentage was the highest reported percentage of "I don't know" responses on the survey. Only twenty-six percent of the respondents reported the changes in interaction made by the staff were beneficial. For primary care physicians, this percentage was slightly higher (32%), but still low.

Uptake of Non-Deficiency Model

The open ended responses highlighted intriguing insights into the level of uptake of non-deficiency models of disability. First, though the majority of respondents indicated medical professionals were willing to make accommodations for their children with autism, many responses suggested parents and primary caregivers perceived medical professionals as having a deficiency-based perception of their child with autism. When discussing health care providers, one respondent wrote, "they seem to focus on autism first, then maybe on the physical condition…once she nearly died because an emergency physician was afraid to touch her." In response to the question "What changes to health care systems are needed to improve the lives of families with children with autism?" one respondent stated "treating (them) like they are like everyone else but with more open mind to make it work." Similarly, another wrote "doctors and other staff that are sensitive…autism is NOT a pre-existing condition and they did NOT ask to be autistic!"

Such answers are intriguing since they also tend to suggest an incomplete uptake of non-deficiency models of disability on the part of parents and primary caregivers. In fact, in written comments of parents and primary caregivers they directly compared autism to a disease several times. For example, when describing unmet medical needs, one respondent wrote, "My oldest daughter had cancer…I felt I got a huge amount of support, a social worker, etc…with my Autistic (sic) son I've had to fight and advocate everything for him." Similarly another wrote "autism should be covered as a disease or disorder by insurance." Another respondent put the same sentiment more bluntly in stating "autism needs to be treated just like any other major illness is." It is likely that the focus of the survey encouraged respondents to consider the health care aspects related to autism and therefore predisposed them toward disease-based consideration of disability.

It is certainly possible the categorical nature of insurance coverage contributes to this phenomenon more than do genuine attitudes about disability. Even so, this is conflation of disability and disease is not a foregone conclusion. For example, when asked for needed improvements to the system, one respondent stated "coverage of autism!!! To understand that autism is not something that can be 'fixed'…It is not a disease." Similarly, another wrote, "to cover speech and other health services even though they are related to autism." Finally, and most pointedly, another wrote, "health care needs to be patient centered, even if that means the health care practitioners have to shelve their agendas in dealing with the patients."

Nevertheless, a substantial minority of parents described modifications suggesting uptake of a non-deficiency based model of disability. For example, one respondent reported "his physician has recently introduced dogs that follow the child into the exam room and pretends to have the same tests performed on it…this greatly comforts my boy." Similarly, another parent who described her practitioner as exceptionally knowledgeable about autism stated that she appreciated "being able to come in before hand and take pictures of keys elements like waiting rooms, personnel pictures, the exam table, etc to create a social story" and that her practitioner allowed for "going a few times before the appointment to develop trust." As is common in accommodations surrounding disability, many of the modifications were costless, requiring little more than flexibility and changes in attitudes. For example, one respondent wrote, "they do make an effort to accommodate her issues with transitions…not always requiring her to change into a gown for exams."

Discussion

The findings suggest limited uptake of non-deficiency based models of disability in the healthcare system on the part of health care practitioners. Not only were healthcare providers unlikely to be the first to notice autism in individuals, they were often not considered reliable sources of information on autism. This discrepancy reveals a core challenge with regard to the interaction of individuals with autism (and disabilities more generally) and the health care community. Since the focus of the health care community is primary on disease rather than health per se, the expectations of health care providers with regard to autism becomes clouded. Health care professionals struggle with differences they cannot (and, perhaps, should not) attempt to cure.

Frustration of parents and primary caregivers often surrounded this lack of clarity of purpose. For some, the essential desire was for accommodations that would allow for better incorporation of individuals with autism into the public health infrastructure. In fact, in the case of parents and primary caregivers who lauded their health care providers, appropriate accommodations most often motivated the praise. Health care providers might be expected to encounter patients with autism (or, more likely, their parents and primary caregivers) coming from either side of this philosophical divide at any point in time, presumably with little or no warning about which goals and interpretations were preferred by given individuals and families at any moment of time.

Parents and primary caregivers had numerous suggestions for accommodations to either the physical settings or practitioner behaviors in health care provision which would allow their children to better participate in the process. The most common recommendation regarding the office infrastructure was to shorten wait time or create a "quiet room" with less sensory stimulation where a child with autism and his or her parent or primary caregiver could wait. Another common recommendation was to include toys in the waiting room which tend to be of particular interest to children with autism such as Legos.

When it came to the behavior of health care professionals, the most common change recommended by parents and primary caregiver was a fundamental element of non-deficiency based models of disability — taking an interest in understanding autism as an element of an individual's experience. For example, one responded listed "training staff on behaviors associated with autism; staff how to draw blood on children who are very agitated; training doctors on current research in autism so they won't dismiss biomedical interventions" as modifications that could help his child participate better in his health care.

Ironically, given the tendency to highlight a lack of flexibility on the part of individuals with autism in deficiency-based descriptions, increased flexibility on the part of the physician or staff was quite commonly recommended as well. For example, one respondent wrote of a need for more flexibility of process on the part of her child's primary care physician, stating that "it would be nice if the pediatrician was understanding that simple things like peering in her ears are fear inducing." Another expressed her wish that her child's primary care physician understood her child's differences when it came to interpreting body language. Finally, a parent described a harrowing experience at an emergency room, as follows:

I took him to (location) ER for stitches a few months ago and they had no Idea how to deal with him. The ER doctor argued with me that they didn't need to sedate him for stitches. I told the doctor I couldn't risk to have him thinking going to the doctor was scary or painful…. the doctor tried to touch his head and then after around of screaming, tantrum and blood flying every where, they finally got some versed…They didn't have any flavored liquid so they crushed up the pills mixed them into grape juice and expected him to drink it out of a cup. I asked for an oral syringe which they did not have and so I used a regular syringe to try and squirt it in his mouth and get him to swallow it…. never again.

Uptake of a non-deficiency model of disability tends to promote more genuine communication with individuals with disability and their families, as opposed to an assumed deference to the professional's opinions. As another parent put it, barriers are created because "the staff does not talk to my son- they treat him like he is retarded and speak to me to ask questions instead of asking HIM questions…my son is highly intelligent and verbal and they don't treat him like he is because he has autism so they have LOW expectations of him."

Conclusion

Relations between individuals with disabilities and health care providers have long had the tendency to become strained. Hardly recovered from a long history of institutionalization or other medically motivated exclusion and often frustrated by a lack of sophistication with regard to disability experiences, individuals with disabilities tend to take issue with treatment plans developed within deficiency based models of disability. Health care providers, on the other hand, often become confused and frustrated in their efforts to provide healthcare to patients widely considered to be the neediest either as a result of intensity of health care needs or (all too often) socio-economic status or both.

Although progress has been made in the uptake of non-deficiency models on the part of health care providers, significant work remains. Perhaps as health care moves toward a more health oriented, client centered approach, some degree of uptake of such understandings of disability will naturally flow from the increased recognition of patients or clients as individuals. Nevertheless, it would likely be helpful for disability studies scholars and activists to engage in more deliberate rapprochement with health care academics.

It would be potentially helpful, for example, to reduce (or at least qualify) the general use of the term "medical model/paradigm" of disability to refer to deficiency based model of disability. After all, the vast majority of the current generation of health care professionals most likely does not understand itself as having been part of the historical deliberate oppression of individuals with disabilities in the name or practice of medicine. Though reparations for these (and ongoing) harms is in some cases a viable and necessary aspect of both empowerment and justice, given enough resources and otherwise achieved self-determination, progress can occur in their absence. To the extent that such discourse can be achieved from a position of strength on the side of disability studies, both scholarship and daily lives of individuals stand to benefit.

Substantial philosophical and policy challenges emerged from this analysis surrounding the issue of health care coverage. Some parents discussed autism as a disease due to a fear of exclusion from the conditions covered by health care insurance. In the case of some other respondents, this frustration manifested in the use of deficiency based language and arguments. For others, it involved explicit reference to autism as a disease.

This reflects two ongoing tensions in non-deficiency based models of disability. First, as is mentioned earlier, rejection of deficiency based models of disability is frequently described by disability policy activists and scholars as a rejection of the medical model of disability. This results primarily from a history of unnecessary intrusion and institutionalization routinely experienced by individuals with disabilities during the first two-thirds of the twentieth century (Shakespeare 2006). When such discourse is taken from this context, however, it can sound like a full rejection of health care. It is hardly surprising that parents and primary caregivers of children would resist such an implication.

The second tension is more profound and complex. To what degree disability should be mitigated (or even mitigatable) is a thorny subject in the context of non-deficiency based models of disability, particularly as they were initially conceived primarily by individuals with physical disabilities with stable functionality. The question of whether or not individuals with disabilities or — in the case of children, parents and primary care givers — have a right or responsibility to attempt to cure symptoms of a disability that are not life threatening is unresolved. One interpretation of an uptake of non-deficiency based models of disability is that such "symptoms" represent nothing more than differences which the society has a duty to accommodate. Another is that individual society members have both a right and responsibility to "pull themselves up by their own bootstraps" to the full extent possible meaning that all possible cures or mitigations should be employed in the interest of achieving functionality as close to typical as possible.

The middle road — that individuals should have the right to individually determine the degree to which he or she considers differences to be celebrated characteristics or personally problematic — is appealing, especially in the context of society as individualistic as the United States. However, this middle road is challenging for policies based on binary taxonomies of disease and disability (i.e. defined by the presence or absence of an identified set of characteristics). After all, a primary function of by public and private health care insurance is to predetermine which treatments are available under what circumstances. Therapies and treatments may become unavailable for all if some with similar characteristics argue they are unnecessary.

Furthermore, though forced 'care' may be a somewhat historical phenomenon in the United States at the beginning of the twenty-first century, the concern that declaring treatments available given a set of characteristics could result in a loss of choice for those who do not want treatment. This concern is arguable particularly relevant for parents and primary caregivers who may become at risk for charges of neglect if they choose to forego particular therapies or treatments for their child. Since the discourse surrounding many autism therapies states that they are only, or most, useful when used with very young children, this concern is especially understandable in the case of autism. Even in the absence of forced care, however, there is a concern that increased social stigmas will be applied to those who forgo mitigation of their disability related characteristics. Since self-determination is a fundamental tenet of non-deficiency based models of disability, differences in attitudes toward mitigation need to be further explored in the context of disability theory and developed into improved disability policy. After all, without such exploration, appreciation of and support for neurodiversity remains incomplete.

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Appendix 1: Survey questions

  1. How old is your child with autism? (open ended response)
  2. What is your relationship to your child with autism? (select biological parent, adoptive parent, foster parent, grandparent, sibling, aunt/uncle or other)
  3. Is your child with autism a boy or a girl? (select boy or girl)
  4. How old was your child when you or another family member first began to suspect your child had a developmental difference? (select six month intervals up to 5 years and older)
  5. Who first mentioned autism as a potential diagnosis for your child? (select from other parent, other family member, friend, family physician, medical specialist, therapist, early childhood educator, teacher, daycare provider or babysitter, social work, police officer, self or other)
  6. How old was you child when he or she was formally diagnosed by a health professional? (select from six month intervals up to 5 years and older)
  7. What type of autism does your child have? (open ended response)
  8. Does anyone else in your family have autism? (select from no one, child's mother, child's father, child's sibling, child's grandparent, child's aunt, child's uncle, child's cousin or other)
  9. In the current (or upcoming if school is not in session), which of the following best describes your child's formal educational environment? (select from: General education classroom, public school, no special education services; General education classroom, public school, with Individualized Education Plan (IEP); general education classroom, public school, with 504 plan; special education classroom, public school; Special school for children with disabilities, public school; General education classroom, private school, no special education services;General education classroom, private school, with special education services; Special education classroom, private school; Special school for children with disabilities, private school; Home school; College or university; Other, Please Specify)
  10. Which of the following have you ever used in the management of your child's autism? (select from Applied behavior analysis (ABA); Relationship Development Intervention (RDI); Speech therapy; sensory integration; Diet modification; Special education; Music therapy; Riding therapy; Medical intervention; Respite care and other)
  11. Which of the following are you current using in the management of your child's autism? (select from Applied behavior analysis (ABA); Relationship Development Intervention (RDI); Speech therapy; sensory integration; Diet modification; Special education; Music therapy; Riding therapy; Medical intervention; Respite care and other)
  12. What are the top three interventions you have used in the management of your child's autism? (open response)
  13. What were the worst or least expensive interventions you have used in the management of your child's autism? (open response)
  14. How good a source of information about autism is each of the following? (Respondent was asked to evaluate the following: friends, family, internet, family doctor, medical specialist, government agency, government agencies, private organizations, religious organizations, school, childcare provider, social worker and police officer)
  15. How much time in the average week do you spend looking for information about autism or related programs designed to help your child? (open ended response)
  16. How aware are you of public policies and laws related to autism? (respondents were asked to rate their awareness on a Likert scale)
  17. How do you pay for your child's general health care? (select from Personal funds/no insurance; Medicaid; Heath Maintenance Organization (HMO):Preferred Provider Organization (PPO); Other insurance program; or Other, please specify
  18. About how many times per year does your child visit his or her primary care physician? (open ended response)
  19. Who usually takes your child to appointments with his or her primary care doctor or health care provider? (select all that apply from the following: Child goes alone; Self; Other parent; Another adult relative; A friend of the family; A paid child care provider; A volunteer child care provider or Other)
  20. How often does your child usually go into the exam room alone? (select from always, sometimes, never, I'm not sure)
  21. How difficult is it to get your child to go to his or her doctor or primary health care physician? (select from much easier than going other places; Somewhat easier than going other places; about the same as going other places; Somewhat more difficult than going other places; Much more difficult than going other places or I am not sure)
  22. How does your child respond to entering your primary physician or other general health care provider's office? (select from much easier than going other places; Somewhat easier than going other places; about the same as going other places; Somewhat more difficult than going other places; Much more difficult than going other places or I am not sure)
  23. What, if any, changes to your children's primary care physician's or other general health care provider's office would be likely to make your child more comfortable there? (open ended response)
  24. What, if any, changes to your children's primary care physician or other general health care provider's office would be likely to make you more comfortable there? (open ended response)
  25. How does your child respond to the staff at your primary care physician's office? (select from much better than other unfamiliar people; somewhat better than other unfamiliar people; about the same as other unfamiliar people; somewhat worse than other unfamiliar people; much worse than other unfamiliar people; and I don't know)
  26. Does the staff at your child's primary care physician's office treat your child differently than other children? (select from yes, no, or I'm not sure)
  27. How does the staff interact differently with your child than with other children? (follow-up question to #26 if answered in the affirmative, open ended response)
  28. Do you think the staff's differences in interaction help your child? (follow-up question to #26 if answered in the affirmative, open ended response)
  29. How does your child respond to his or her primary care physician? (select from much better than other unfamiliar people; somewhat better than other unfamiliar people; about the same as other unfamiliar people; somewhat worse than other unfamiliar people; much worse than other unfamiliar people; and I don't know)
  30. How informed do you believe your primary care physician is about autism? (select from very informed, somewhat informed, somewhat uninformed, very uninformed, or I don't know)
  31. Does your child's primary care physician interact with your child differently than other children? (select from yes, no or I don't know)
  32. How does your primary care physician interact differently with your child than with other children? (follow up to question #31 if answered in the affirmative, open ended)
  33. Do you think the physician's differences in interaction help your child? (select from yes, no or I don't know)
  34. About how many times a year does your child see specialists and other health care providers other than his or her primary health care physician? (open ended)
  35. Have you or your child ever had a negative experience with a health care provider as a reaction to his or her autism? (select yes or no)
  36. Have you or your child ever had a positive experience with a health care provider as a reaction to his or her autism? (select yes or no)
  37. Have you ever had difficulty with your health care insurance as a result of your child's autism? (select yes or no)
  38. What changes to health care systems are most needed to improve the lives of families with children with autism? (open ended)
  39. Are you aware of any public programs available to your family that you do not participate in? (select yes or no)
  40. Are your family's public or community activities restricted as a result of your child's autism? (select yes or no)
  41. Are there any services related to autism that your family currently needs but is not receiving? (select yes or no)
  42. What is the nature of the service(s) that your family currently needs but is not receiving? (respondent could select as many from the following as appropriate: child/respite care; special education; support for home schooling; speech therapy; Applied behavior analysis (ABA); Relationship Development Intervention (RDI); sensory integration; music therapy; other therapeutic intervention; nutritional planning; medical services; dental services and other)
  43. Is your child with autism currently receiving any services he or she does not need? (select yes or no)
  44. How many hours of assistance do your family currently use PER WEEK to help manage your child's autism? (select from: less than 1 hour per week; at least 1, but less than 5 hours per week; at least 5, but less than 10 hours per week; at least 10, but less than 15 hours per week; at least 15, but less than 20 hours per week or more than 20 hours per week)
  45. Who USUALLY provides your family with this help? (select from: family living with you; family not living with you; friends or neighbors; government organization/agency; private, for profit, organization; not-for-profit organization; or other)
  46. In the past twelve months, approximately how much money has your family spent OUT-OF-POCKET for doctor's visits or therapy related to autism, not reimbursed by any sources? (select from: none; less than $1000; between $1,001 and $2,000; between $2,001 and $3,000; between $3,001 and $4,000; between $4,001 and $5,000; between $5,001 and $6,000; or more than $6,000)
  47. In the past twelve months, approximately how much did your family spend on OUT-OF-POCKET expenses for prescription or non-prescription medication for your child with autism that were not reimbursed by any sources? (select from: none; less than $1000; between $1,001 and $2,000; between $2,001 and $3,000; between $3,001 and $4,000; between $4,001 and $5,000; between $5,001 and $6,000; or more than $6,000)
  48. In the past twelve months, approximately how much did you family spend on OUT-OF-POCKET educational expenses related to autism that were not reimbursed by any sources? (select from: none; less than $1000; between $1,001 and $2,000; between $2,001 and $3,000; between $3,001 and $4,000; between $4,001 and $5,000; between $5,001 and $6,000; or more than $6,000)
  49. During the past twelve months, has your family had financial problems because of your child's autism? (select from yes, no or I'm not sure)
  50. Because of your child's autism, has anyone in your family ever had any of the following employment difficulties? (select from: mostly the mother;; mostly the father; both the mother and the father; step-parent; grandparent; sibling; other family members; or other)
  51. Which of the following is the best description of the area in which you live? (select from rural, urban, suburban or other)
  52. How many adults currently live in your household (including children aged 18 or older)? (select from 1, 2, 3, 4 or other)
  53. How many children under the age of 18 currently live in your household? (select from 1, 2, 3, 4, or other)
  54. With which ethnic or cultural background(s) does your immediate family identify? (open ended)
  55. What languages are spoken in your home on a daily basis? (open ended)
  56. For the year ending December 31, 2005, what is your best estimate of the total income (before taxes and deductions) of all household members from all sources? (select from $10,000 intervals up to $150,000 and above)
  57. Do you have any additional comments? (open ended)
  58. May we contact you for a follow up interview related to your family's experiences with autism? (open ended)
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Copyright (c) 2009 Dana Lee Baker



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