Translational Studies for Inclusive SocietyThe Diversity and Regularity of Development
The diversity of autism spectrum disorders
When it comes to people who have been diagnosed with a developmental disability such as autism spectrum disorder (ASD), while they have something in common insofar as they have all received this kind of diagnosis, the manner in which these characteristics are manifested differs among individuals and is extremely diverse. The term “autism spectrum” itself expresses a diversity of disorder characteristics and implies various gradations ranging from individuals in whom the manifestation of these characteristics is strikingly clear to those in whom it is not so evident. Even research into the genes related to the causes of disease and disability, which has developed rapidly in recent years, has not found particular genes that give rise to ASD, and it has become clear that from a genetic perspective people with ASD are different from each other and ASD is a syndrome with great diversity *1.
The fact that, while they have certain things in common, children with ASD are also individual beings whose difficulties manifest in different ways is, in a sense, quite obvious. Even so, I can also say that this is something I myself only perceived through experience, or came to understand, after I moved to Ritsumeikan University seven years ago and began to participate in activities related to the treatment and education of these children.
Dealing with each participant as a unique subject
We recently conducted an interview survey of people with ASD and their mothers concerning their special needs, and one of our most significant findings was the mothers’ belief in the necessity of recognizing the particular differences between individuals with ASD when it comes to developmental support*2. Having a disability pointed out or receiving a diagnosis can itself be considered an important step toward appropriate support, but on the other hand it also carries a risk of creating a certain kind of stereotypical attitude in those providing support. What many mothers in fact experienced was quite severe breakdowns of communication between themselves and support providers who were confident that they understood children with autism.
There are cases in which it is necessary for someone facing some kind of difficulty to have their difficulty labeled a “disability”, but when it comes to providing some kind of support, the necessity of treating each individual being supported as a unique subject cannot be overemphasized. I believe this is a very important point that must be taken into consideration as a fundamental stance when human services are provided targeting these sorts of individuals.
Addressing regularity in development
I have mentioned the importance of understanding that each individual is different, but, on the other hand, I think that a perspective that allows us to grasp the regularity of human development is also important. In this project I am engaged in a developmental checklist for children. While recognizing that the phenomena of human development are very diverse, assume the existence of regularity and appropriate timing in human development. n this initiative we aim to base our work not only on the statistical reliability and validity employed in previous studies employing intelligence tests or developmental tests, but also to address the regularity*3 of qualitative changes in development.
Data collection is now being conducted in Japan and Vietnam (see the photograph), and we have also begun our analysis. There are plans for some of the results of the Japanese data analysis to be presented at a roundtable at the Annual Meeting of the Japan Society of Developmental Psychology to be held in March, 2014. Going forward, as the analysis of data in both countries progresses we expect various similarities and differences between the two cultures to be made clear, and among the similarities, in particular, we hope to be able to discover developmental regularity.
The creation and use of a developmental checklist based on developmental regularity is expected to provide information that will be very useful in designing and implementing appropriate support while respecting the diversity of development.
- *1 Atsushi Senjyû (2014) Jiheishôsupekutoramu toha nanika: hitono “kakawari” no nazo ni idomu [What is autism spectrum? : Looking into the mystery of human “relations”; 自閉症スペクトラムとは何か：ひとの「関わり」の謎に挑む]
- *2 Yoshiaki Takeuchi (2012) Kôkinô jiheishô supekutoramu Shôgaisha no tokubetsuna niizu – seinenkikôki 〜 seijinki no kodomo wo motsu hahaoya ni taisuru intabyû ni motodukubunseki – [Special needs of adolescents and adults with high-functioning autism spectrum disorder: An analysis based on the interviews with their mothers.; 高機能自閉症スペクトラム障害者の特別なニーズ―青年期後期〜成人期の子どもを持つ母親に対するインタビューに基づく分析―] Shinrikagaku [Psychological Science; 心理科学] 33(2), p. 46-63.
- *3 The theoretical basis of this project is the theory of hierarchies and stages (e.g. Masato Tanaka (1987) Ningenhattatsu no riron [A theory of human development; 人間発達の理論],Aokishoten.
Related projects
- Theme 3: Research on Escorted Support for Inclusive Society Families/children with developmental disabilities project
