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Autism is a spectrum the difficulties in defining and diagnosing autism

Autism is a spectrum the difficulties in defining and diagnosing autism is an open access article distributed under the Creative Commons Attribution Licensewhich permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Abstract In light of the steady rise in the prevalence of students with autism, this study examined the definition of autism published by state education agencies SEAsas well as SEA-indicated evaluation procedures for determining student qualification for autism.

We compared components of each SEA definition to aspects of autism from two authoritative sources: However, despite similar foundations, SEA definitions of autism displayed considerable variability. Evaluation procedures were found to vary even more across SEAs. Moreover, within any particular SEA there often was little concordance between the definition what autism is and evaluation procedures how autism is recognized.

Recommendations for state and federal policy changes are discussed. Introduction Autism spectrum disorder ASD refers to a group of pervasive neurodevelopmental disorders that involve moderately to severely disrupted functioning in regard to social skills and socialization, expressive and receptive autism is a spectrum the difficulties in defining and diagnosing autism, and repetitive or stereotyped behaviors and interests [ 1 ].

Only two decades ago ASD was considered rare, occurring or detected in about 1 in 1,000 children [ 23 ].

Autism Research and Treatment

Autism is defined for federal special education administrative purposes as stated below. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. Autism is increasing in schools as well as in society. EDwhich must monitor prevalence of autism and other educational disabilities, reported that US students with autism numbered 15,580 in 1992 [ 6 ]; by 2011 they numbered 406,957 [ 7 ].

The federal definition of autism preceded the fourth edition of the Diagnostic and Statistical Manual DSM-IV [ 8 ], and it is essentially unchanged since 1990.

Within public school systems, students who have been clinically diagnosed with either a DSM-IV PDD or with DSM-5 Autism Spectrum Disorder are likely to be identified under the federal category of autism for the purpose of receiving special education services. Additionally, DSM-IV autistic disorder has criteria that address age-of-onset and ruling out other conditions. However, identification criteria still include substantial social problems social initiations and responses, nonverbal social communication, and social relationships and restricted, repetitive behaviors or interests deviant speech or movements, rituals and resistance to change, preoccupations, and sensory reactivity.

State education agencies SEAs have not yet incorporated DSM-5 information into their policies, procedures, and practices related to students with autism, and the DSM-5 definition was not involved in the present study. Implications of DSM-5 criteria for autism are presented in Section 4.

States also have administrative definitions of various categories of education disability, including autism. State education agency SEA definitions of a disability do not autism is a spectrum the difficulties in defining and diagnosing autism to match the federal definition but must substantially address its elements or lose federal financial support for special education.

Thus it is puzzling that the percentage of prevalence of autism varies greatly across different states. In 2012, for instance, when the mean rate of autism for all SEAs was 0.

No doubt the prevalence of ASD naturally varies somewhat with geography [ 4 ] but probably not by such a large factor, greater than tenfold in adjacent states. Conceivably, some state-by-state variation might be attributable to the content of SEA definitions of autism and perhaps the evaluation procedures required to accurately measure the concepts presented in definitions.

In a study of SEA definitions of autism, MacFarlane and Kanaya [ 10 ] found substantial variation in the eligibility criteria used by different states. However, these researchers encountered difficulty obtaining eligibility information directly from SEAs through their websites and email requests to SEA administrators, so they based their findings on a review of special education definitions contained autism is a spectrum the difficulties in defining and diagnosing autism state legal code documents repositories of laws and supportive regulations.

MacFarlane and Kanaya [ 10 ] noted that one limitation of this process is that state legal terminology may not accurately reflect SEA policies and practices. However, this was the limit of their analysis of SEA evaluation procedures and their link to autism eligibility criteria. Because eligibility evaluation procedures can help operationalize a definition of autism, there clearly is a need to explore SEA evaluation information to a greater extent.

Federal special education law addresses, in a general way, evaluation procedures for determining whether a student is diagnosed as having a disability, including autism: Based on this guidance, each state determines evaluation procedures, and these may be further modified by individual school districts. Obviously, this could lead to a wide variety of evaluation procedures implemented by diverse evaluators.

It would be good to know what evaluation procedures different SEAs use for autism eligibility; however, we are aware of no compilation of them. To accurately determine eligibility, evaluation procedures should appropriately measure criteria established by SEAs.

Similar criteria across states might be expected to call autism is a spectrum the difficulties in defining and diagnosing autism similar evaluations. If evaluation procedures do not align with stated criteria or vary greatly across states, they throw into question the accuracy of autism identification by SEAs. The purpose of the present study was to consider the current status of SEA definitions of autism is a spectrum the difficulties in defining and diagnosing autism and SEA evaluation procedures for autism eligibility.

We wanted to analyze components found in the definitions in order to compare definitions to their probable sources and to each other.

We also wished to analyze the evaluation procedures in order to compare them across SEAs and to consider the extent to which SEA evaluation procedures address concepts contained in the SEA definitions of autism. In this instance, we coded the definition which included reference to state legal code.

Some SEAs presented not only a statewide definition but additional definitions apparently reserved for particular school districts in the state. For this occurrence, we coded just the definition for the entire state. For many SEAs, evaluation procedures for autism were located within the same website that stated the definition. Therefore, we added two more components to the coding list: We marked a SEA definition as Essentially DSM if it presented the three DSM-IV-TR set A criteria for autistic disorder briefly stated as impaired social functioning, impaired communication, and stereotyped interests and activitiesincluding the four specific subcriteria for each criterion, with no more than minor wording changes e.

Coding Evaluation Features We developed a second coding list to analyze and compare SEA diagnostic evaluation procedures for autism. We began with the evaluation statement in IDEA-2004 regulations which covers any educational disability, not just autism: In addition, our initial reading of the SEA evaluation statements revealed some other evaluation areas that we added to the list of features.

These additions included the following: Following practice with coding, the authors clarified coding procedures through discussion. For example, SEA evaluation statements that included psychological assessment were coded as individual intelligence assessment and, if the statement indicated, additional psychological procedures. The first author coded the definition component list and the evaluation features list for all SEA definitions and all SEA evaluation statements.

The second and third authors each coded definition components and evaluation features for an assigned half of the SEAs. Coding Agreement Intercoder agreement was calculated separately on each definition component and evaluation feature by dividing the number of coding agreements by the number of agreements plus disagreements.

We coded this information according to the definition and evaluation lists we created. Initial agreement prior to discussion to achieve consensus per coding item ranged from 0. After definition basis was determined, we calculated a point-biserial correlation to investigate autism is a spectrum the difficulties in defining and diagnosing autism a relationship existed between source of definition IDEA or DSM and autism prevalence reported by states to the US Department of Education [ 7 ].

The analysis revealed no relationship based on this factor. The modal number of components was 8.

Results of our examination of various components in each SEA definition are summarized in Table 1. Autism is a spectrum the difficulties in defining and diagnosing autism of state education agency autism definitions. As Table 1 shows, considerable numbers of definitions included particular forms of social interaction impairment impaired nonverbal social, lack of peer relationships, lack of spontaneous joint attention, lack of social-emotional reciprocity as criteria for autism.

In some definitions the particular forms were additions to a general statement about social interaction impairment, while in other definitions there was no general statement, just one or more of the particular forms of social interaction impairment.

Quite a few state definitions also presented particular forms of communication impairment as criteria for autism impaired spoken language, impaired conversation ability, stereotyped language, impaired fantasy or social play.

Again, in some but not all SEA definitions the particular forms were additions to a general statement. Restricted, Repetitive, and Stereotyped Behaviors and Interests. Only 2 SEA definitions presented a general statement that to qualify for autism the student must show restricted or stereotyped behaviors or interests.

Autism Spectrum Disorder

However, all the definitions stated that one or more of the particular forms of restricted, repetitive, or stereotyped behaviors and interests had to be present for the student to qualify. Specifically, nearly all SEA definitions listed preoccupation with stereotyped interests, nonfunctional routines and rituals, and stereotyped mannerisms, while about one-third of definitions listed preoccupation with object parts.

Of these, 41 stated that exceptions to the age of three onset guideline or requirement are permitted; 5 definitions did not state an age of onset. On the other hand, three states specified conditions that could coexist with autism eligibility.

Autism Evaluation Features The number of SEA autism evaluation features ranged from 0 to 15 with 8 as the modal number of criteria. Only 10 SEAs used all, and only, features of the IDEA evaluation statement to indicate their evaluation criteria for autism eligibility. In addition, the following other evaluation features were present in the majority of SEA evaluation statements: Table 2 presents additional features that we found in less than 50 percent of SEA evaluation procedures.

Among these less-recommended features is the requirement to administer an autism-specific evaluation as part of the eligibility process. Although 3 of these SEAs did indicate the required use of a state-created autism checklist, none gave any reference to a source or psychometric characteristics of those checklists. Features of state education agency evaluation procedures for autism.

Discussion The present study revealed that definitions of autism and the eligibility evaluation procedures for autism is a spectrum the difficulties in defining and diagnosing autism are readily available on SEA websites.

Most SEA definitions substantially resemble the federal definition of autism found in IDEA-2004, including its components about deviant responses to sensory experiences and exclusion of students with emotional disturbance. On the other hand, only one-fifth of SEA evaluation procedures substantially reflect the IDEA-2004 statement on assessment for disability eligibility, although many SEAs incorporate a few aspects of that statement.

Study results suggest several points that call for criticism, but first we acknowledge that it is far easier to disapprove of existing definitions and evaluation statements about autism than to present demonstrably superior alternatives. That said, below we point to several drawbacks to the existing SEA information and offer a direction that could lead to their improvement. Table 1 shows that most SEA definitions prohibit qualification under the category of autism for a student who has certain other conditions.

This is a flaw because some of those other conditions are commonly found among children with autism. For example, children with autism often experience mood disorder, anxiety disorder, and other mental disorders [ 15 — 17 ] that might qualify the student for emotional disturbance.

Yet in 44 SEA definitions, qualifying for emotional disturbance excludes autism is a spectrum the difficulties in defining and diagnosing autism for autism. Given this disconnect, it is possible that students with characteristics of autism may either not be so identified due to rule-out criteria or may be identified under the autism category but not receive proper services for their unevaluated mental health issues.

The DSM-5 definition of autism spectrum disorder autism is a spectrum the difficulties in defining and diagnosing autism the comorbidity of autism with other mental disorders, such as anxiety and obsessive compulsive disorder, and allows for specification of these coexisting conditions within the clinical diagnosis.

SEAs that undertake a revision of their autism special education category may wish to follow the lead of DSM-5 in this regard by recognizing that students whose emotional and behavior problems might qualify them for emotional disturbance may more appropriately be qualified for autism.

Our study revealed that 29 SEAs called for health evaluations and 18 called for medical evaluations; however, what these evaluations entail was left unstated or vague. Although 3 SEAs called for a neurological examination as part of the health or medical evaluation, we recognize that such a universal requirement would represent an enormous cost to school districts. However, we do recommend that SEAs clarify the content and purpose of stated health and medical evaluations including whether they represent the same information.

Developing a comprehensive description of the student beyond the basic categories of social functioning, communication skills, and repetitive behaviors will provide schools and families with a more complete picture of student needs and the services required to meet them by a variety of providers. Of course, substantial communication impairments do characterize a large fraction of students with autism.

These include failure to speak, echolalia, and other severe problems of receptive and expressive language [ 20 ]. While 45 SEAs called for speech and language evaluation to qualify for autism, none specified and few suggested language problem areas to evaluate. SEA evaluation procedures for autism may be improved by the addition of more specifics on language evaluation.