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Neurodiversity, neurological disabilityand the public sector: notes on theautism spectrumDana Lee Baker aa Washington State University , USAPublished online: 16 Aug 2006.

To cite this article: Dana Lee Baker (2006) Neurodiversity, neurological disability andthe public sector: notes on the autism spectrum, Disability & Society, 21:1, 15-29, DOI:10.1080/09687590500373734

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Disability & SocietyVol. 21, No. 1, January 2006, pp. 15–29

ISSN 0968-7599 (print)/ISSN 1360-0508 (online)/06/010015–15© 2006 Taylor & FrancisDOI: 10.1080/09687590500373734

Neurodiversity, neurological disability and the public sector: notes on the autism spectrumDana Lee Baker*Washington State University, USATaylor and Francis LtdCDSO_A_137356.sgm10.1080/09687590500373734Disability & Society0000-0000 (print)/0000-0000 (online)Original Article2006Taylor & Francis211000000January 2006Assistant Professor DanaBakerDepartment of Political Science and Criminal JusticeWashington State University14204 NE Salmon Creek AvenueVancouverWA 98686USA+(360) 546-9125danaleebaker@yahoo.com

Neurodiversity and neurological disabilities reflect rising public sector challenges. Both refer to thesame set of medical conditions, but speak to different aspects of diversity affecting the public sector.Neurodiversity describes features of neurological difference associated with individual or commu-nity identity that is a more or less elective choice of those experiencing neurological difference.Neurological disability refers to impairment of socially determined major life functions caused byobservable, diagnosable difference in an individual’s brain. Both neurodiversity and neurologicaldisability produce challenges and opportunities for public programs and societies. This articleemploys findings from a survey of families with children with autism to examine administrativeimplications of neurodiversity and neurological disability. The findings suggest that in managingnew (and rising) kinds of diversity, public administrators must navigate sharpening divides betweeninterests related to inclusion and those related to identity.

Managing growing diversity is a pervasive challenge and ongoing opportunity for theAmerican public sector (Rosenbaum et al., 2000; Riccucci & Meyers 2004). Whereasdiversity is acknowledged as one of the key assets of modern society, the many mani-festations of difference force public programs to become more rigorously dynamicthan might otherwise be the case (Macgillivray, 2004). Traditional initiatives andresearch surrounding diversity focus on overtly obvious aspects human experiencewhich tend to be common experiences of all members of a given family or community(such as gender, ethnicity, or religious affiliation). For these types of diversity,preferred policy solutions and administrative strategies have been to create programsthat assist those with categorical differences with to integrate and to construct broad-based rights initiatives to prevent – or at least dissuade – discrimination on the basisof categorical difference (Strolovitch, 1998).

*Department of Political Science and Criminal Justice, Washington State University, 14204 NESalmon Creek Avenue, Vancouver, WA 98686, USA. Email: danaleebaker@yahoo.com

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In recent years, it has become unclear whether policies and public programs relyingon taxonomies to protect rights effectively address diversity challenges and opportu-nities. Human beings repeatedly resist categorization. Furthermore, new dimensionsof diversity have come to light that are neither as immediately obvious nor inherentlycollective. Disability-related diversities tend to involve both of these aspects. This isespecially the case for non-physical disabilities because they require changes beyondphysical infrastructures to create effective administration of rights-based policy solu-tions. As a result, managing neurological disability and neurodiversity are tellingaspects of modern diversity as protected and promoted by the public sector. Thefollowing is an examination of autism as a case from which to explore administrativeimplications of neurodiversity and neurological disability. The findings of this casestudy demonstrate that in managing new (and rising) kinds of diversity, publicadministrators will have to navigate sharpening divides between interests related toinclusion and those related to identity.

When examining the management of diversity, it is important to consider the barri-ers and bridges experienced by target populations in their efforts to become includedin public programs and activities. The stakeholders employed in this case study areparents and primary caregivers with children with autism and related conditions(hereinafter referred to as autism) who reported on their experiences with a broadbase of public infrastructures. The analysis of these experiences generates insights notonly for the administration and management of disability related programs, but alsofor more generalized governance of expanding differences.

Autism, diversity and the public sector

Autism history

Autism was once a rare neurological disorder infrequently encountered by mostmembers of the healthcare community and even more rarely encountered by thepublic at large. Over the course of the past decade, however, the recorded incidenceof autism has changed (Volkmar et al., 2004). The USA, like many other countries,appears to be in the midst of an autism baby boom. The reported cases of autism haveincreased at least tenfold in the past couple of decades (Fombonne, 2003;Newschaffer & Curran, 2003a). Public attention to the condition has also increaseddramatically. In recent years, autism has been the cover story of Newsweek and Time,the subject of congressional hearings, the focus of thousands of articles in the popularpress and a rapidly growing body of scholarly research. As autism gains more publicattention, public management of autism-related issues is changing. The current expe-riences of families with children with autism represent a key starting point for thecreation of a better understanding of the effective public administration of bothneurodiversity and neurological disability.

The causes of the autism baby boom are hotly debated by physicians, parents,psychologists, educators, policymakers and individuals with autism (Sequeira, 2001;Fombonne, 2003b). The role of villain has been alternately played by everything from

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Neurodiversity, neurological disability and the public sector 17

mercury in vaccines, to service-seeking diagnostic trendiness, to better observation onthe part of healthcare providers and educators, to revisions of the diagnostic standards(Kielinen et al., 2000, pp. 162–167; Croen et al., 2002, pp. 207–215). The quest forcausality is a fundamental epidemiological concern, however, the administration ofpublic issues related to autism currently outpaces the progress of medical explana-tions or solutions.

The increase in autism diagnoses demands a revised understanding and treatmentof individuals with autism and their families (Feinberg & Vacca, 2000). After all,regardless of the cause of the rise in incidence, program and policy challenges remainand can be expected be become more pronounced as the current generation of chil-dren with autism matures. As a lifelong condition with a behavior based diagnosis, nostandard course of treatment, and an incomplete understanding of prognosis givendiagnosis (Rellini, 2004), autism represents a significant public challenge for the fore-seeable future. This article presents viewpoints of parents and primary caregivers ofpublic infrastructures based on their experiences and expectations.

Neurological disability and diversity

Public policy responses to social challenges resulting from disability were recast ageneration ago as being rights-based (Hernandez et al., 2004; Rimmerman & Herr,2004). Disability was once understood in the western world as a quintessentiallypersonal or familial challenge resulting from a fault in the physical, neurological oremotional composition of an individual’s body or mind. To be disabled was to behandicapped and therefore a locus for pity, perpetual professional supervision and,often, poverty (Bagenstos, 2004). The policy solutions most often used to address thisdefinition of the challenges surrounding these types of human difference were acts ofsocial, community, or public charity and medical care (McCarthy, 2003). During themid-20th century era of scientific optimism, policy solutions rooted in medical treat-ment were especially favored. Individuals with disabilities were expected to play the‘sick’ role in society and, as a result, were systematically denied the ability to partici-pate as full citizens in society (Bagenstos, 2004; Herzog, 2004).

Since the 1960s, however, disability has become understood as an amalgam ofpersonal characteristics and public infrastructures designed – intentionally or not – toexclude those whose bodies or minds deviated from the norm (Hurst, 2003; Herzog,2004). Although many policy (and other) decisions are still being made using otherunderstandings of disability (Wolbring, 2003), public issues related to disability areincreasingly defined as rooted in inadequate protection of the rights of populace onthe part of government (Hurst, 2003; Bagenstos, 2004; Rimmermannn & Herr, 2004).

The rights-based understanding of disability highlights the importance of reportedinformation about stakeholder experience in the construction and evaluation of disabil-ity-related policies and programs. Administering programs that minimize disablingaspects of public infrastructures involves considering both circumstances when disabil-ity becomes an element of identity for individuals, families or communities, and wheninclusion into general public activities becomes (unnecessarily) restricted.

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In the case of autism and other neurological differences, the former is calledneurodiversity and the latter is neurological disability. An analysis of the reportedexperiences of parents and primary caregivers of children with autism helps shed lighton aspects of administrative challenges and opportunities related to both. The vastmajority of the current generation of children with autism is expected to live out lifeincorporated much more fully into society. Today’s children and youth with autism,their families, healthcare providers, educators, public agencies and other stakeholderscannot, therefore, rely on the experiences of the current adult population with autismto accurately plan for the future. While autism is unique in many respects, thisdifference from the past holds for many types of diversity in modern society.

Method

Data for this project were collected using an instrument designed by the author,correlated to other surveys focus on disability and public infrastructures such as theParticipation and Activities Limitation Survey of Statistics Canada. The Families’Experiences with Autism Survey includes questions about the history of their experi-ences with autism, their experiences and impressions of the public and socialinfrastructures (including the attitudinal, physical, fiscal and programmatic elements)and basic socio-economic characteristics. In addition to the structured survey ques-tions, respondents had the opportunity to provide further comment and to participatein follow-up interviews.

Participants were recruited using techniques for rare populations (Fulton et al.,2001). The recruitment strategies included snowball sampling, listing on dedicatedlist-serves, direct mailings facilitated by relevant nonprofit and government agencies,assistance from special education teachers, and postings in doctors’ offices. Thesetechniques tend to limit the generalizability of findings because the sample is notrandomly drawn from the population at large. However, using sampling techniquestailored for rare population tends to broaden the scope of participation within thepopulation of interest (in this case parents and primary caregivers of children withautism) and create the opportunity to collect enough responses to address concernsrelated to external validity.

The survey was administered to 423 parents or caregivers of children with autismin Missouri between July 2003 and May 2004. Respondents included 357 biologicalparents, 25 adoptive or foster parents and 14 grandparents. The rest of the respon-dents had other relationships to the individual with autism for which they were theprimary caregiver, such as sibling, aunt or uncle. The sample included 36% whoreported living in a rural setting, 43% living in urban settings and 18% living in asuburban environment (the remaining included those who designated themselves ashaving a split living arrangement, in some cases to be closer to services on given days).The reported income levels included 5% who made less than $10,000 per year, 27%with incomes between $10,000 and $30,000, 45% with incomes between $30,000and $60,0000 and 24% with incomes greater than $60,000 per year (the remaining9% declined to state their income). As is to be expected given the gender ratio of the

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population of individuals with autism (Volkmar et al., 2004), the majority of therespondents’ children with autism (83%) were male.

Findings

Diagnosis and administration: concerning bi-causality

Autism is diagnosed solely on the basis of observed behavior (Rellini et al., 2004). Asa result, the diagnosis of autism can be a murky and somewhat politicized endeavor(Freeman & Cronin, 2002). Because diagnosis can, therefore, be affected by factorsthat vary across households (such as access to information, civic engagement andsocio-economic status), the public sector both shapes and is shaped by autism diag-nosis rates and patterns (Baker, 2004). While there is a definitive and reliable set ofcriteria in place for the condition, some physicians have reported a hesitancy todiagnose autism. Furthermore, an ongoing lack of awareness of autism means somestakeholders are slow in understanding and addressing the child’s neurological differ-ence. Since the public sector’s role in both supporting neurodiversity and mediatingthe effects of neurological disability depend on an identified population of individualswith autism, systemic differences in paths to diagnosis impair equitable managementof diversity in the public administration of disability related programs.

In order to gain a better understanding of the path to diagnosis, the parents andprimary caregivers were asked a series of questions related to how their child’s autismwas discovered. Most of the parents and primary caregivers surveyed began to suspecta developmental difference before their child’s second birthday. The parents andprimary caregivers with girls had begun to suspect a difference slightly earlier thanrespondents with boys. Since virtually all parents or primary caregivers had begun tosuspect a developmental difference prior to their child’s entry into kindergarten, thepublic sector’s role in addressing the earliest concern of parents and primary caregiv-ers of children with autism is of increased importance.

Timing is a crucial element of disability identification that can affect life longparticipation in public infrastructures. In addition, since the currently most proven(and ultimately most cost effective) therapies for autism are best begun before thechild enters kindergarten, the administration of challenges related to neurologicaldisability can be expected to worsen with diagnosis delays. In order to test the preva-lence of such delays, parents and primary caregivers were also asked how old theirchild was when he or she was formally diagnosed by a health professional. The aver-age difference between recognition of difference and official diagnosis was three years.Since official diagnosis is often connected to the receipt of services or the initiation ofinterventions, this gap highlights the need for improvement in the communication ofconcerns about autism or autistic tendencies between primary caregivers, healthcareproviders and public sector program administrators.

Respondents were also asked who first mentioned autism or a related condition asa potential diagnosis for their child. Family physicians or medical specialists were thefirst to mention the diagnosis in 23% of the cases, suggesting that the majority of

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families who receive a diagnosis of autism are aware of the diagnosis prior to havingit mentioned to them by a member of the healthcare community. Twenty percent ofrespondents reported that teachers, early childhood educators or daycare providerswere the first to mention the diagnosis and 21% reported that it was either they them-selves or a family member who was the first to suggest autism as a possible diagnosis.Administrators of programs addressing disability should not channel all diagnosisrelated civic education programs through the medical community. The public aspectsof autism experiences, like many differences related to diversity, are not easilyassigned to a single traditional policy arena such as health, education or social welfare.Effective public management of challenges related to autism is an inescapably inter-agency endeavor.

Initial observation on the part of family members is intriguing because even thoughautism is suspected to have a strong genetic component, 71% of respondents reportedthat no one else in their extended family has ever had autism or a related condition.This majority did not include those who reported that while no one has ever beendiagnosed, there were other members with autistic features in their families. Thepercentages of respondents with a recorded family history were slightly differentdepending on the gender of the child – only 66% of respondents with girls reportedthat no one in their family has autism or a related condition. Of those who reportedthat there were others in the family with autism, the most common response (16% oftotal responses) was that the child had a sibling or cousin with autism. This meansthat almost 90% of families currently with children with autism did not experiencethis challenge prior to the current generation of children. Families experiencingautism should not be expected to have prior experience with autism. This calls for aproactive approach and a higher level of awareness about autism on the part of thepublic sector.

Neurodiversity, neurological disability and treatment

A rights-based understanding of disability can be an uncomfortable fit with disabilitytreatment because it emphatically differentiates disability with stable health statusfrom disease (Corker & French, 1999; Smith & Thomas, 2005). Recommendedinterventions for individuals with autism and related conditions are currently unset-tled and somewhat varied. Some of the more common interventions include appliedbehavior analysis (ABA), relationship development intervention (RDI), speech ther-apy, sensory integration, diet modification, special education, music therapy, ridingtherapy, respite care and a growing plethora of (often extremely controversial) medi-cal interventions (such as the intravenous administration of secretin, the use of medi-cations to address issues related to attention span or depression, or chelation in thecase of those who believe there is a connection between mercury poisoning andautism).

Parents and primary caregivers were first asked which types of interventions theyhad ever used in the management of their child’s autism or related condition. Themost commonly used intervention by far was speech therapy, which had been used

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Neurodiversity, neurological disability and the public sector 21

by 90% of the respondents. This was followed by sensory integration (used by 73%).The least commonly used were riding therapy (23%) and music therapy (38%).Thirty-six percent of the respondents also indicated that they had used interventionsother than the ones listed.

An interesting aspect of the answers to questions about interventions was that inmany cases there were interventions that families had once used but were no longerusing. Table 1 shows the percentages of respondents who reported ever using,currently using, and the difference between the two for each of the listed interventions.

The reasons for the drop off in use of interventions are undoubtedly multifaceted.Stated reasons included everything from the child’s development beyond the need forthe intervention (in speech therapy for example), to a determination on the part of theparent or primary caregiver that the intervention was not working for the particularchild, to a change in public health or policy infrastructures that made the interventionno longer available to the child (such as changes in eligibility requirements, age limi-tation or simply a cessation of programs in a given area), to explicit descriptions ofconcerns about neurodiversity (such as expressing that the child was not disruptive incommunity settings and should therefore be accepted into public programs such asschool). Each of these is of concern to those involved in the shaping and managementof disability-related programs.

The breadth of concerns suggests a need for deliberative, individualized and flexi-ble case management on the part of programs designed to assist families of childrenwith autism. Public agencies must make difficult trade-offs in the provision of theseservices in a context that is increasingly consumer-focused. Therefore, informationabout the perceived appropriateness of and access to types of interventions is crucialto the shaping of an effective public management of the autism baby boom in thecontext of both neurodiversity and neurological disability.

In order to gain a sense of participation with public sector programs, parents andprimary caregivers were asked about the nature of the public services they were receiv-ing to help manage challenges related to their child’s autism. Respondents were asked

Table 1. Use of interventions

InterventionEver used

(%)Using (%)

Gap (%)

Applied Behavior Analysis 56 42 14Speech therapy 90 72 18Sensory integration 73 49 24Diet modification 49 27 22Special education 84 68 16Music therapy 38 22 16Riding therapy 23 8 15Medical intervention 63 49 14Respite care 42 27 15Other 36 33 3

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22 D. L. Baker

both if they were receiving services that they did not need and if there were servicesthat they currently needed that they were not currently receiving. Not surprisingly,the vast majority (98%) indicated that they were not receiving any services they didnot need. On the other hand, 70% of respondents reported that there were servicesthat they needed, but were not receiving, even though 89% reported having receivedsome publicly funded services in the last 12 months. The most commonly reportedunmet service need was applied behavior analysis (ABA), an intensive, full-time, ther-apeutic treatment.

Income-based variation in the use of services is a perennial administrative concernof public programs and services. Even if not particularly expensive in the long term(such as diet modification), putting an intervention in place may entail the develop-ment of skills (such as meal preparation) requiring the initial outlay of funds to figureout change in life style. Table 2 shows the percent of each income group that iscurrently using the listed interventions. The incomes given are the respondents’ bestestimates of the total income of all household members for 2002.

The ability to pay for a particular intervention is a primary reason for differences inthe use of a particular intervention, comparison between income levels is a key policyelement of access to rights-based programs. Gaps in access are expected to increasenegative effects of neurological disability. It is also worthwhile to note instances wherethe working poor have lower usage rates, as publicly provided services have incomelimits that are much lower than the level of income necessary to be able to privatelypay for some of the interventions. Other concerns of importance to the public admin-istrator include access to information about a given intervention might be moredifficult for those with fewer resources to secure and the time of day during which theservice is available.

When the highest income group is compared to the lowest, those in the highestreported income level reported higher current usage rates for all of the interventionsexcept music therapy. Given the expense associated with so intense a program

Table 2. Income and intervention

$0 to $10K (%)

$10K to $20K (%)

$20K to $30k (%)

$30K to $40K (%)

$40K to $50K (%)

$50K to 60K

(%)

More than

$60K (%)

Applied Behavior Analysis

27.8 42 51.9 37.7 25.6 38.1 52.7

Speech therapy 55.5 70 81.5 79.2 74.4 85.7 67.0Sensory integration 38.9 40 53.7 51.0 48.8 71.4 50.5Diet modification 16.7 18 25.9 22.6 37.2 33.3 27.5Special education 66.7 70 70.4 69.8 58.1 76.2 69.2Music therapy 22.2 26 22.2 20.8 14.0 31.0 17.6Riding therapy 0.0 2.0 9.3 1.9 14.0 11.9 14.3Medical intervention 44.4 66 46.3 30.2 55.8 47.6 56.0Respite care 22.2 30 27.8 26.4 20.9 31.0 30.8

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Neurodiversity, neurological disability and the public sector 23

(generally a minimum of 20 hours per week), it is not unexpected that the biggestgap in current usage rates was in Applied Behavior Analysis (which showed a 24.9%difference in current participation between the highest and the lowest income brack-ets). The only category of intervention that showed a gap of less than 10% betweenthe highest and lowest income brackets was special education. This is not surprisinggiven the Individuals with Disabilities Education Act (IDEA), which entitles allstudents with autism (and other disabilities) to an Individualized Education Plan(IEP). Though this policy does not necessarily ensure consistency in the quality ofthe plans, this suggests that the program is, on the whole, administered in a mannerthat at least appears to addresses neurological disability and neurodiversity.

Another characteristic of concern to public administrators by which access to inter-ventions might vary is by the type of community of residence. Table 3 shows thecurrent participation rates in listed intervention by the type of community in whichthe family resides.

Those who lived in suburban communities had the highest participation rates inapplied behavior analysis, speech therapy, medical intervention and respite care.Those who lived in cities (either small or large) reported the highest participationrates in each of the other intervention categories. The gap in reported participationrates was based on the type of community ranging from 8.0% for special educationto 17.7% in medical intervention. This largest gap was between those who lived inrural communities and those who lived in suburban ones.

Rural families were least likely to report that they had paid out-of-pocket expensesfor doctor’s visits or therapy that were related to their child’s autism. Whereas46.8% of rural families reported paying out of pocket expenses, 73.8% of small cityurban families, 79.2% of suburban families and 100% of large city urban familiesreported paying these expenses. This can be compared with the fact that only 48%of all families reported out-of-pocket expenses for prescription or nonprescriptionmedications related to autism and 40% reported out of pocket educational expensesrelated to autism.

Table 3. Type of community and interventions

Rural (%)Urban

(large city) (%)Urban

(small city) (%) Suburban (%)

Applied Behavior Analysis

38.7 42.4 42.9 48.6

Speech therapy 66.9 71.2 76.2 81.4Sensory integration 46.5 56.1 52.4 45.7Diet modification 21.8 33.3 25.7 31.4Special education 63.4 69.7 71.4 70.0Music therapy 18.3 12.1 30.5 25.7Riding therapy 8.5 10.6 6.7 8.6Medical 43.7 45.5 49.5 61.4Respite care 23.2 22.7 29.5 31.4

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24 D. L. Baker

Gathering information about autism

Parents and primary caregivers were asked what sources of information they used togather information about autism and related conditions. Especially because autism isa lifelong condition, the challenges related to autism are not always consistent andthere is a seemingly growing presence of misinformation about autism, it is crucial forfamilies to be able to gather quality information about autism. Administering effectivecivic education requires an understanding of where stakeholders collect information.

The parents and primary caregivers were first asked which sources of informationthey had ever used to gather information about autism or a related condition. Thepercentage of respondents who indicated they had used the listed sources are asfollows: general Internet search (77%); purchased books (74%); private organiza-tions’ websites (71%); attended conferences (61%); doctor’s office (55%); publiclibrary (51%); email group or list serve (50%); private organizations by telephone ormail (49%); friends or family (49%); government agency websites (46%); govern-ment agencies by telephone or mail (33%); school or university library (26%); andchurch or temple (2%). In addition to these pre-selected types of information sources,24% responded that they had also used additional types of sources. Most of thoseanswering the survey said they had used more than one source of information. Thepopularity of electronic resources as at least one of the sources used by respondentsis striking (and likely to be on the rise).

In administration of policies and programs related to autism, there is consistentconcern that the mechanisms that families use to become more informed aboutconditions affecting their members will vary dramatically by type of living environ-ment and family resources. Part of the challenge is, of course, the unavoidable factthat the impetus to become informed will vary by families – some families with anapparent utter lack of opportunity to collect information will become amazinglyinformed whereas others much more rich in opportunities to become informed mightremain ignorant by comparison.

Nevertheless, especially when it comes to the transmission of reliable, up-to-dateand reasonably comprehensive information, it is incumbent on the public sector towork to ensure that the access to good information is as universal as possible. Table 4shows the percentage of parents and primary caregivers living in different types ofcommunities who reported having ever used selected information sources. Acomparison of these usage rates contribute to answers to questions related to bothopportunity and inclination to access different information sources based on wherefamilies live.

As can be seen in Table 4, the data collected by the Families’ Experiences withAutism Survey suggest differences in the types of information used based on wherethe family lives. Nevertheless, sources that could be accessed independently and atthe convenience of the family tended to be the most popular among families in allenvironments. The most common type of information source for rural families was ageneral Internet search. For urban families living in large cities, the most commontypes of information sources were books that the families purchased and private

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Neurodiversity, neurological disability and the public sector 25

organizations’ websites. The vast majority of suburban families had also used ageneral Internet search and over 80% of these families had also used private organi-zations’ websites, online groups or purchased books. General Internet searches orpurchased books were also the sources most commonly used by families living insmall cities.

Although they had the lowest use rates of many other types of information sources,rural families had the highest percentage of respondents who had used doctors’ officesas a source of information about autism. It is also interesting to note that the digitaldivide – the differential use and ability to use electronic resources – was not consistentacross types of electronic resource. Approximately half of the respondents from alltypes of communities had accessed government websites to gain information aboutautism. However, when it came to communicating with other families or stakeholdersusing an electronic group, those living in suburban or large urban setting were abouttwice as likely to have used this source of information as those living in small cities orrural settings.

Parents and primary caregivers were next asked to rate the quality of differenttypes of information sources. The majority of the respondents rated family doctorsand medical specialists as at least satisfactory. Furthermore, half of the parents orprimary caregivers rated medical specialists as either excellent or good sources ofinformation about autism. However, only 27% of the respondents felt that familydoctors were either excellent or good sources of information (compared to 69% whothought this about the Internet, 56% for private organizations and 35% for schools).This demonstrates a need to consider new communication strategies about informa-tion related to autism.

Table 4. Family location and type of information source

Rural (%)Urban

(large city) (%)Urban

(small city) (%) Suburban (%)

Government agency websites 42.4 43.9 49.1 50.0Government agencies by telephone or mail

41.0 30.3 31.1 20.8

Private organizations’ websites 65.3 80.3 66.0 83.3Private organization by telephone or mail

48.6 60.6 38.7 52.8

Internet search 74.3 72.7 73.6 93.1Email group or list-serve 38.2 72.7 34.0 81.9Public library 44.4 43.9 57.5 56.9School or university library 25.7 22.7 27.4 27.8Doctor’s office 63.9 42.4 57.5 48.6Attended conference 56.9 63.6 63.2 61.1Friends or family 46.5 47.0 49.1 54.2Church or temple 2.8 0.0 2.8 2.8Purchased books 68.1 80.3 76.4 80.6

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26 D. L. Baker

Government agencies were rated quite similarly to healthcare providers, with amajority feeling that the information was at least satisfactory and 32% rating it asexcellent or good as a source of information. It is also interesting to note that the onlysource of information that none of the respondents rated as terrible was the Internet.

Discussion

Disability-related policy tends to occur in three types: civic education policy designedto transmit information about specific conditions; policies designed to secure andprotect civil or human rights; and policies designed to ensure or promote access tospecific services or interventions thought to assist in the management or cure ofdisabling conditions. The experiences of parents and primary caregivers of childrenwith autism suggest stakeholders deliberately engage the public sector using a broad-spectrum approach. Effective administration of public programs related to autismmay depend on protecting and promoting programs addressing neurodiversity forteenagers and adults with autism while focusing on neurological disability for childrenwith autism.

Given appropriate access to services and interventions informed by good informa-tion about a disabling condition, an individual and his or her family might beexpected to be in a better position to protect and exercise their rights within thesociety at large. The results of this case study emphasize that families with childrenwith autism tend to understand themselves as both eager consumers and enthusias-tic propagators of information about autism. Most of the participants compre-hended their child’s condition before receiving official diagnosis from a member ofthe medical community. Since this official diagnosis is often used as a token foradmission to public sector programs and services, the direct engagement of a givenfamily’s concerns about autism are best addressed as early as possible. Though theexploitation of the diagnosis is of concern, this concern is less likely to come tofruition if there is more open discussion of the diagnosis between professional andfamilies.

Service packages might also be improved with a better understanding of the reasonsfor stopped interventions. When parents and primary caregivers were asked about thetypes of interventions they had ever and were currently using, there was a drop off rateranging between 14–24%. More information is needed about the course of interven-tions families use to address concerns related to autism and by what mechanism plansare developed over time. The popularity of independent information sources is likelyto be connected to the types of plans developed by individual families. A moreeffective public response depends on and ultimately guided by approaches taken byfamilies in the long-term management of autism.

The results of the Families Experiences with Autism Survey also demonstrate thata primary administrative challenge related to neurological disability is in the selectionof which therapeutic and service options to promote and, sometimes, fund, in the faceof uncertain scientific evidence and dramatically different, and often opposing, stake-holder experiences with specific treatments. With regard to neurodiversity, the public

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sector is faced with creating affordable service packages and program structures thatallow those who wish to seek intervention to do so while ensuring that those who wishto decline treatment are allowed to do so. Autism, after all, is not a disease that resultsin deterioration of health or mental status over time. Autism is, for some, afundamental element of identity not to be unnecessarily interfered with by the state.Distinguishing between and simultaneously supporting these two elements, there-fore, is an especially telling challenge for modern public administrators.

As mentioned above, Applied Behavior Analysis was the most commonly reportedunmet service need. This is intriguing, especially from the standpoint of neurodiver-sity. ABA is both the most scientifically proven and hotly contested treatment forautism. The therapy involves full-time intensive treatment with the goal of teaching achild or individual with autism to act as if he or she were neurologically typical. Forindividuals who are more involved with autism (particularly those who tend towardself-injury), ABA therapy can be tremendously life-enriching. For those for whomautism is a more manageable difference, ABA therapy can represent oppression ofessential elements of their personality and thought process that discriminates againstall but the more neurologically typical thought and behavior patterns. The effective-ness of public sector programs depends on accommodation of both. The administra-tion of ABA involves not only the obvious funding challenges of providing suchintensive therapies, but ensuring that programmatic preferences and rights prefer-ences are consciously weighed.

As is the case with many public challenges with fuzzy boundaries (Corker &French, 1999), stakeholder communication and interagency collaboration is thefoundation upon which the policy response is built. The need for improved capacityfor the delivery of quality information is a diffuse, shared responsibility. Individualswith autism will increasingly engage with policy development and public healthresponses. As the current generation of children with autism grows up, this part ofthe conversation will become both more complex and easier to engage. Assumptionsabout the most effective policies are precarious if made in the absence of input fromall stakeholders. In coming years, this will include a much broader spectrum ofadults with autism and their families. The boundary between neurodiversity andneurology disability, while perhaps remaining fuzzy, will become more pronouncedand potentially more divisive if rights-based policy remains essentially categorical.Managing both aspects of diversity simultaneously depends on supporting andrewarding efforts for broad-based participation, rather than categorical protection ofselect individuals.

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