The Autism Society Event and Education Recordings Archive

Research and a better understanding of Autism occurs daily. However, research into how children with different languages and different cultures are afflicted by ASD is limited. Scarce is reliable research focused on deaf children, despite an increased Autism prevalence of 1 deaf child in every 104. This presentation will cover the literature that is available, current research projects, and examine the cultural influences that may be playing a factor in the diagnosis of Autism in children who are Deaf. Current descriptors of Autism are vast, but share several common characteristics. The most commonly recognized characteristics include trouble interacting with the caregiver (smiling, laughing, or eye contact), limited communication abilities, insistence on routines and sameness (change as well as surprises are difficult), repetitious play, difficult times with make-believe play, challenges in interacting with peers, or engaging in behaviors that disrupt daily living. A diagnosis of Autistic Disorder is made when a child has impairments in his or her social interactions, communication abilities and style, as well as behavior. Each child who is impacted by Autism is unique, no two children with Autism are alike. (Szymanski and Brice, In-Press) While many explanations have been offered for the increased rate of Autism as well as for cause of Autism itself, the true cause is still unknown. Nonetheless, in the United States Autism remains the fastest-growing developmental disability for children. But the question becomes, is this true for all children. The research, interventions, fundraising, and media typically exclude those who have additional disabilities, at other times it excludes those children who do not speak English. Thus, a question is raised- what happens if the child is Deaf and has Autism? And perhaps an even bigger question, what do we really know about those children who are both Deaf and have Autism? Deafness Within the United States exists an estimated 20 million people with a hearing loss. Of those approximately 2 million are considered to be deaf or have severe enough hearing loss which will greatly impact their lives. This group of deaf people often faces unique challenges in communication, education, socialization, and professional development. In addition, deafness is often coupled with other disabilities. Research has shown that approximately 45% of Deaf individuals suffer from at least one additional disability. These disabilities include Mental Retardation, blindness, Learning Disabilities, physical disabilities, Autism and an array of others. However, while information related to deafness and these other disabilities are often readily available or researched, the one which has limited information is children who are Deaf and have Autism. Deafness and Autism Current estimates of Autism in children within the United States most recently has been estimated as 1 in 150 by the Centers for Disease Control and Prevention in 2007 (up from 1 in 166 in 2005), but this number overlooks those children who are deaf. In order to begin to estimate the number of children who are both deaf and have Autism, one can look at the Annual Survey of Deaf and Hard of Hearing Children and Youth that is conducted by the Gallaudet Research Institute (Szymanski and Brice, In-Press). In the most recent survey available (2004-2005), researchers reported that there were approximately 37,500 Deaf and Hard-of-Hearing Children in special education programs throughout the United States, including both residential programs and public programs. From the 37,500, in-depth information was available for 35,407 children. Using this national summary report a total of 341 Deaf and Hard-of-Hearing children were reported as having a diagnosis of Autism within the United States, or 1 deaf child in every 104 was receiving services for both a hearing loss and Autism. It is important to remember that the Annual Survey conducted by the Gallaudet Research Institute does not account for every deaf child in the United States and thus this number may be an under representation of how many children have a hearing loss and Autism (Szymanski and Brice, In-Press). On average a child who is Deaf will be diagnosed with Autism later in life than a hearing child with Autism. In one study of various factors which may possibly impact the age of diagnosis of Autism, Deaf children were diagnosed an average of one year later (Deaf-Autistic group = 4.1 years old, Hearing-Autistic group = 3.1 years old) (Mandell, Novak, and Zubritsky, 2005). In another study specifically designed to study children who are Deaf and have Autism, Deaf children were diagnosed with Autism between their 5th and 16th birthday, while the hearing children in the study were diagnosed between their 4th and 11th birthday (Roper, Arnold, and Monteiro, 2003). Another study found the mean age of diagnosis of Autism in children who were Deaf was 5 years and 6 months, closely correlating to the age of entry into a residential school in New York (Jure, Rapin, and Tuchman, 1991). The substantially later diagnosis of Autism in children who are Deaf raises much concern, especially related to the knowledge that early intervention yields the best results for children with Autism. Researchers and educators speculate that the reasoning behind the delayed diagnosis is the difficulties distinguishing characteristics of Deafness from characteristics of Autism as well as limited resources for parents and educators guiding the identification of Autism and Deafness. It may also be possible that deaf children are diagnosed later because there are relatively few psychological tests which have been made for or even include considerations for children who are deaf. In fact, currently there are no approved instruments to diagnose a child who is deaf with Autism. While most of the studies that have investigated children who are Deaf and have Autism, have investigated language development, as well as intervention services a few resources exist which have attempted to explain the characteristics of these children. Rosenhall, Nordin, and Sandstrom (1999) investigated hearing loss prevalence rates, but also caution against underestimating as well as overestimating results. They noted problems with deficient cooperation, attention deficits, and cognitive problems in assuring that test results were accurate. However, they do not note any difficulties in communicating with children who are Deaf and have Autism (Rosenhall, Nordin, and Sandstrom, 1999). Similar to Ronsehall and colleagues prevalence study Jure, Rupin and Tuchman (1991) investigated both prevalence rates as well as characteristics of children who were deaf (n = 46) and diagnosed by the research team in New York. Jure and colleagues noted that there was a “clear relationship between the severity of autism and the severity of cognitive deficits;” all “severely mentally deficient children (n = 8) were all severely autistic” (p. 1067). They also noticed that none of the children with normal or near-normal sign-verbal cognitive skills and functional intelligence had a severe form of autism. Further, they elaborated that when sign language was taught to those with severe autism (n = 8), over half (n=5) improved significantly in the area of social skill development (Jure, Rupin and Tuchman, 1991). Echolalia, a common characteristic of Autism, was only reported in 5 children of those who reportedly who were exposed to sign language (n = 27). Over half of the sample (27 of 46) was exposed to sign language, of those exposed 52% were able to sign individual words, 27% could sign phrases, and 22% failed to produce any signs. Jure, Rupin and Tuchman (1991) did not mention if their were any differences between the deaf children with Autism who used sign language and those who did not. Also, no mention was made as to how the children were exposed to sign language and if in fact they had a consistent language model. In the end, they conclude “these children should be placed in a special class at a school for the deaf that provides not only sign language but also a program of behavioral management.” (Jure, Rupin and Tuchman, 1991, p. 1070). In what is perhaps the only psychological study currently available into the concurrence of Autism and deafness- Roper, Arnold and Monteiro, 2003 conclude that “no differences in autistic symptomatology are found between the deaf autistic group and hearing autistic group.” Roper and colleagues administered the Autism Behavior Checklist (ABC), Interaction Assessment (IA), and a 12-question research designed questionnaire. A total of 23 respondents participated in the study which included three groups, Deaf autistic (n = 9), Hearing autistic (n = 6), Deaf learning disabled (n = 8). No significant differences were found among age of participants. While Roper and colleagues (2003) conclude that there were no differences between the deaf and hearing groups, they fail to mention several key pieces of information. An explanation of what characteristics on the ABC, the Deaf autistic group was not provided even though the mean score was much higher than the hearing autistic group. It is important to note that all of the participants in the study were over 17 years old. Both the ABC as well as the IA do not have adult norms, nor have they ever been used in individuals as old as the present sample size. In the end, Roper, Arnold, and Montiero conclude that “failure to recognize autism at an early age in children who are deaf frequently results… in services [which] may fail to identify many commonly recognized autistic symptoms that are masked by the deafness and related communication difficulties” which then leads to a situation “where the individual needs of the child, related to autism are not met.” (Roper, Arnold and Montiero, 2003). Grinker suggests the notion that “autism does not exist outside of culture,” thus suggesting that within culture [deaf culture] exploration of autism need occur (2007, p.11). Szymanski's (2007) pre-dissertation research project supports such notion finding that that deaf children with Autism do not present the same as hearing children with autism, suggesting possible cultural influences. Szymanski found children who were deaf (n = 16) scored very differently than what is expected from hearing children with autism, on items from a self designed measure, the Autism Spectrum Disorder and Deafness Questionairre (ASDDQ), which consists of items from commonly used measures. Differences were specifically noted on behavior and communication domains. It was found that children who were deaf and had autism did not display symptoms of behavior as one would expect (e.g., self injurious behaviors, avoidance of touch, eye contact). They engaged in more social opportunities, and initiated more social conversations. Differences were also found depending on how much language and what kind of language exposure the child had, those children who used sign language had the best results. Lastly, differences were found between children with different parental hearing status, children with deaf parents scored significantly better than those with hearing parents. In fact differences were so apparent that nearly opposite patterns were found. These findings suggest that it may be possible to hypothesize that deaf children do in fact present differently depending upon exposure to culture. This hypothesis closely matches the work of Grinker (2007) which suggests necessity to examine autism from a cultural perspective. Objectives The proposed presentation will cover the above information as well as suggestions for possible diagnostic strategies for children who are deaf and have Autism. Emphasis will be placed not only on the probable cultural differences that children with a hearing loss present to the professional but also on the practical differences that children with hearing loss present. Also, current research into deafness and Autism will be presented which is not yet available in the literature. The importance of this presentation is obvious, more children who are deaf are being diagnosed with autism than hearing children, however, there is no research commonly available. Those who attend this presentation will be able to take the knowledge they learn back to schools, practices, and clinics and assure that the child who is deaf as well as has autism is given the best possible services.

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