IMFAR Conference in Atlanta – Highlights and My Favorites

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The International Meeting for Autism Research (IMFAR) by the International Society for Autism Research (INSAR) was happening in Atlanta this year and here are some highlights and my take.

First, I think this is such an important annual scientific conference. We all know that there is no cause or cure for autism symptoms. No, I don’t mean when we find (GOD WILLING) a cure, we will change autistic people. It just means we will get rid or find a way to manage the symptoms of autism as well as the root cause. 
Now, this conference is probably the Mecca for autism researchers around the globe and this year they had a section for Autism in Africa which as an African American autism mother, I am interested in. Sadly, the are almost no adequate services, research, outreach and awareness in Africa along with this persistent stigma that is associated with all disabilities and mental health conditions. 
Here is that discussion;

Autism in Africa

There is a dearth of autism research on the African continent; this scientific panel session aims to highlight recent research progress addressing this gap. The panel includes scientific presentations from two sub-Saharan African countries, using a combination of qualitative and quantitative methodologies and reporting on both urban and rural African populations. Altogether, the findings from these studies highlight the major barriers to appropriate support for families of children with autism in Africa (including the severe shortage of diagnostic and educational services, lack of awareness about autism and its causes, and high levels of stigma), and report on a promising scalable model that can help tackle these problems by training frontline community-based health extension workers. The challenges and opportunities discussed in these presentations apply not just to the countries under study, but have relevance for the entire African continent and low/middle income countries elsewhere. During the panel discussion these common themes will be reviewed and priority areas for future research and opportunities for intervention will be highlighted, in order to facilitate future autism research, advocacy and capacity building efforts.
Thursday, May 15, 2014: 1:30 PM-3:30 PM
Marquis D (Marriott Marquis Atlanta)
1:30 PM
Services for Children with Autism and Their Families in Ethiopia: Service Providers’ Perspectives
B. Tekola Gebru, Y. Baheretibeb, I. Roth, D. Tilahun, A. Fekadu, C. Hanlon and R. A. Hoekstra

1:55 PM
Perceived Causes of Autism in Rural and Urban Multi-Cultural Context on the Kenyan Coast
J. K. Gona, C. R. Newton, K. Rimba, R. Mapenzi, M. Kihara and A. Abubakar

2:20 PM
Increasing Autism Awareness Among Rural Community-Based Health Extension Workers in Ethiopia: The Health Education and Training+ (HEAT+) Project
R. A. Hoekstra, B. Tekola Gebru, D. Tilahun, A. Fekadu, Y. Baheretibeb, I. Roth, B. Davey and C. Hanlon

There were also discussions about nonverbal autism and communication by Dr. Connie Kasari from UCLA. Sadly, there is not a lot of research on nonverbal autism even though over 25% of children with autism are nonverbal and probably over 80% of Somali ASD kids are nonverbal. I think this is one of the areas we need to improve research by finding out why and how to help these children and adults with nonverbal autism.

17675

Joint Engagement and Social Communication in Minimally Verbal Children with ASD

Thursday, May 15, 2014
Atrium Ballroom (Marriott Marquis Atlanta)
A. Holbrook1 and C. Kasari2, (1)Graduate School of Education and Information Studies, University of California, Los Angeles, Los Angeles, CA, (2)Center for Autism Research and Treatment, University of California Los Angeles, Los Angeles, CA
Background: Both joint engagement and language have been studied in the context of parent-child dyads. It is well established that episodes of joint engagement facilitate children’s early language development, but to our knowledge the relationship between joint engagement and social language between child and therapist is yet to be examined.

Objectives: This study examined the association between joint engagement and child language abilities within therapist-child interactions with minimally verbal children diagnosed with autism spectrum disorders.

Methods: Participants were selected from the large multi-site study, Characterizing Cognition in Nonverbal Individuals with ASD. All children used fewer than twenty spontaneous, functional words during a language sample, and had received at least two years of prior intervention. Videotaped baseline intervention sessions were coded for 61 children between the ages of 5 and 8 years. Episodes of joint engagement were defined as time a child and therapist coordinated their involvement around an object or activity. The mean length of joint engagement was used from the first intervention session. Child language abilities were: (1) total social communicative utterances (TSCU), which excluded all scripted utterances; (2) number of different word roots (NDWR), which represented the variety of novel words; (3) total number of comments (TCOM), defined as utterances used for the function of sharing information, or describing an action or object in their attentional focus. The language variables were averaged over the first two sessions to gain a more accurate representation of abilities from this minimally verbal population.

Results: The Spearman’s rho revealed a statistically significant relationship between the mean length of joint engagement and TSCU (rs = 0.261, p < 0.05) and TCOM (rs = 0.309, p< 0.05). However, mean length of joint engagement was not significantly correlated with the NDWR.

Conclusions: Language abilities are a key target for minimally verbal children with autism spectrum disorders. Results demonstrate that joint engagement is associated with social communication and commenting language. Joint engagement between a child and a therapist may be a critical factor to facilitate social language development of minimally verbal children.

There was another interesting topic about verbal communication and cultural difference. I thought this was very true and we need more research in this area since cultures vary which might affect a child’s ability to verbally communicate.

A Cross Cultural Look at Parenting Beliefs about Child Rearing and Verbal Interaction with Their Children with Autism Spectrum Disorders

Thursday, May 15, 2014
Atrium Ballroom (Marriott Marquis Atlanta)
V. Smith, University of Alberta, Edmonton, AB, Canada
Background:  

According to best practice guidelines for treating children with autism spectrum disorders (ASD), including and training parents to assist their child’s communication development is considered an essential component and a natural step to provide consistent, daily support in early childhood. Research suggests that parents can learn to be effective language facilitators; however, we know very little about the cultural differences, including beliefs and practices, of parents of children with ASD. In fact, the sporadic observations of non-Western cultural groups have made it clear that the large literature on language facilitation strategies primarily describes Western parent-child interaction patterns.  

Objectives:  

The aim of the present study was to 1) review the literature on early parent-child interaction across cultures for typically developing children and for children with ASD. This review served as the basis of a questionnaire that was developed 2) to better understand parents’ beliefs about child rearing and ‘how to talk to children’ to promote language development in four cultural groups of parents of children with ASD: South Koreans, South Indians, Euro-Canadians, and Indo-Canadians.

Methods:  

Items in the questionnaire were designed in consultation child language scholars, speech and language pathologists, health care workers from both Korea, Indian, and Western cultural groups and addressed: independence of child’s learning, nature of language learning, and early language milestones, beliefs about disability, and parenting. The questionnaire was administered to 128 South Korean, 71 Indian families of children with ASD and contrasted with 65 Euro-Canadian and Indo-Canadian families of children with ASD.

Results:  

Differences across the four cultural groups were found in aspects of socialization, the value of talk, beliefs about disability, the way status is handled in interaction, and understanding about teaching language to children.

Conclusions:  

Interpretation of the findings was made by attempting to understand the cultures and their implied values and beliefs. Family functioning has a huge impact on the effectiveness of interventions and so too do their cultures. The beliefs and values that inform family functioning influence the creation of each child’s unique ‘developmental niche;’  thus better understanding of culture may helps us to design interventions that are applicable to families of diverse cultural back grounds.

One more area I am interested was autism, services and diversity and there were quite few in this conference, here are some of my favorites. As you can see in below list – there were autism and Islam, autism and African American, Hispanic, Socio-Economic, Parental Stress and so much more. There was a Somali parent that went there this time which I am happy about. The goal is for every parent to learn how to advocate for their child and others in their community because united we negotiate and divided we beg.

Services

Thursday, May 15, 2014: 5:30 PM-7:00 PM
Atrium Ballroom (Marriott Marquis Atlanta)
5:30 PM
156 Access to Therapy for Children with Autism: A
Population-Based Analysis

T. W. Benevides, H. J. Carretta and S. J. Lane

5:30 PM
157 Traits of Autism Spectrum Disorder and Co-Occurring Mental Health Problems Among Prisoners
H. L. Hayward, L. Underwood, J. M. McCarthy, E. Chaplin and D. G. Murphy

5:30 PM
158 Availability of BCBA Providers As a Barrier to Service Implementation in ASD
R. P. Travis, A. P. Juárez, C. R. Newsom and Z. Warren

5:30 PM
159 Autism Speaks Early Access to Care Community Screening Event: Description and Preliminary Outcomes
L. M. Elder, M. Chen, A. Halladay, A. M. M. Daniels and P. Herrera

5:30 PM
161 Disparities in Utilization of Services Around the Time of Autism Spectrum Disorder Diagnosis
T. Savion-Lemieux, M. Elsabbagh, M. Steiman, P. Szatmari, S. E. Bryson, E. Fombonne, T. Bennett, S. Georgiades, P. Mirenda, W. Roberts, I. M. Smith, T. Vaillancourt, J. Volden, C. Waddell, L. Zwaigenbaum, R. Bruno, E. K. Duku and C. Shepherd

5:30 PM
162 Closing the Gap Between Research Policy and Practice
C. Ramsden, A. Roberts, M. Uljarevic, S. Carrington, L. J. White, L. Morgan and S. R. Leekam

5:30 PM
163 Development and Validation of a Psychosocial Quality of Life Questionnaire for Individuals with Neurodevelopmental Disorders
L. A. Markowitz, C. Reyes, R. Embacher, L. L. Speer, N. J. Roizen and T. W. Frazier

5:30 PM
164 Family Access to Disability Services: Is There Hope?
V. H. Mackintosh and B. Myers

5:30 PM
165 Evaluating the Impact of Statewide Community-Based Training for Early Intervention Providers
L. V. Ibanez, S. R. Edmunds, C. M. Harker, E. A. Karp and W. L. Stone

5:30 PM
173 Multisensory Integration and Temporal Synchrony in Autism
E. Smith, S. Zhang and L. Bennetto

5:30 PM
5:30 PM
179 The Shotgun Approach or Acceptance: Parents’ Treatment Selection for Children with ASD
B. E. Drouillard, M. N. Gragg, R. T. Miceli, M. M. Ben-Aoun and S. C. Popovic

Thanks!
Above words do not reflect any agency, committee or candidate.
Idil – Somali Autism Mom & Minority Advocate

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