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Question Time With Elena Seranova

Recently, I’ve come up with a bunch of questions to ask people who’ve worked with autism or people who are researching it in order to get more insight on global opinions on autism. I’m hoping to continue this series and have more people share their stories. Today, I have a guest blogger – Elena Seranova!

Originally from Greece, Elena obtained a major in Psychology and got involved in parent consulting and biofeedback sessions to reduce stress in autistic individuals.


IJ: “How did you get involved with working with autism?”

ES: Back in 2011, I attended a healthcare conference in Copenhagen, Denmark and had the opportunity to meet Gail Wylie, a Canadian therapist. She is an author of many books on autism and introduced me to both holistic consulting and biofeedback applications that lead to stress reduction of autistic individuals. Since I was working with the same biofeedback device Gail had back in Greece, we extensively discussed the applications of it and how they can help in reducing repetitive behaviours and other autistic symptoms- mostly calming down the patient.

IJ: “What should researchers be directing their focus on more?”

ES: The multifactorial pathology of autism creates the need for an integrative approach in research. For instance, some of the autistic patients demonstrate remarkable improvement when the daily nutrition is improved (gluten products and sugar excluded). This is not the case with all the autistic individuals and the genetic factors of this differentiation need to be investigated.

IJ: “In your country, do you think that there is adequate or inadequate funding for care and research in autism?”

ES: Greece is currently a country with limited financial resources and the healthcare industry is heavily impacted by the economic crisis we are going through. Last year I participated in a charity organization based in Thessaloniki, Greece. We managed to raise and donate a thousand euros to the Adults Autism Shelter “Sunshine” in order to sponsor the purchase of some new furniture. Since autistic individuals have sometimes the tendency to present self-harming behaviours, this also includes the breaking of all kinds of furniture such as chairs, tables etc. However, this kind of initiative is limited in my country.   There is practically no governmental help for such institutions. Same goes for research. Greek universities currently don’t offer a salary for PhD students meaning that undertaking research means that you also need to work at least part-time to cover your expenses. This of course impacts the quality of the research as well.

IJ:” What can be done about this?”

ES: I believe that foreign organisations should be sponsoring research in regions where there is willingness to conduct high quality research. Awareness is an important part of the funding process so the first step to be taken is to raise it. Social campaigns need to demonstrate the urgency of finding new ways to cope with autistic symptoms; as the global statistics are rising and future generations might have to deal with pandemic rates of autism in the next few decades.

IJ:” What is more important, Acceptance or Awareness?”

ES: My opinion is that both are important and need to be present in today’s society. Awareness is necessary for supporting the scientific research progress and donations that result in a better life quality of some autistic individuals, especially the ones that live in shelters.

Acceptance on the other hand is primarily crucial in our day to day communication with autistics, whether it’s a relative, our child or a patient. Especially in young families, it is sometimes hard to accept the symptoms of ASD. This results in delayed diagnosis and a delay in any kind of therapeutic support. Moreover, when parents do not accept the fact that their child is different than other children, this leads to ignorance of the child’s needs and a poor parent-child interaction, which is already impaired due to autistic symptoms. This may sound strange but sometimes when working with autistic children and getting to know them better, when I see how their mother talks in front of them about their “condition” as they call it, I feel so angry. And as a result I’ll say that I don’t care about the acceptance of the autistic individuals in the society, I just struggle to make the parent understand how important for their children is the acceptance of who they are. The social acceptance is as well necessary, but the parental acceptance is the one that will create optimised daily conditions for an autistic child to be themselves.

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Elena working with Indigo Biofeedback in Greece.


~ If you are interested in reading more posts from Elena, please have a look at a her blog on www.elenaseranova.com

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Autistic symptoms may not be culturally ubiquitous

Having lived in both Singapore and England, it’s hard not to notice how different people in both countries are when it comes to personality and work ethic. Growing up in an Asian country, Maths and Science were the more important subjects to learn while Art and Drama remained nearly irrelevant in our development. Their curriculum is more memory and exam based while western curriculum concentrates on building character and imagination. Both types of curriculum definitely have their benefits and neither are better than the other.

However, one of the things I found difficult coping with when I was younger and when I moved to England for University was socialising. It could be due to my schooling , or partly due to being a sibling of one with ASD, who knows, but I definitely had found it hard to communicate with others at first, especially with a more open atmosphere, where everyone was encouraged to socialise more at university. Eventually, perhaps because of the environment I was in, I learned to socialise better and come out of my quiet personality. This is because, being a neurotypical, I suppose I am able to adapt.

My experience of both curricula has led me to wonder how differences in culture can affect the diagnosis of ASD, so I googled it-

Freeth and colleagues (2013)1 found that Indian and Malaysian students had higher Autism Spectrum Quotient (AQ) scores compared to UK students. They suggested that particular questions in the AQ are interpreted differently. From these results it seems that people from Asian countries possess more ASD traits than western populations. We must note though, these traits are valued in these societies, as they can be seen to have a focused  mindset on work.

It is culturally acceptable and polite for most Asian cultures to be more reserved. Also  certain numbers in Mandarin are a sign of good luck such as 8(八), while number 4(四)sounds like death(死)which is a bad omen. This makes them score higher on AQ questions such as “I usually notice car numbers and/or similar strings of information”.  (If you’re curious, you can take the test yourself by clicking the link at the bottom of this post).  This definitely implicates the idea that there could be more autistic traits in Asia, as it is merely down to cultural norms.

Unfortunately this opens more questions! Where do we draw the line at what really is an Autistic trait and what is just a typical personality trait? According to a global survey 2, the prevalence of ASD is much lower in eastern countries. The reasons are double-edged: over-diagnosis in the West and under-diagnosis in the East. In some areas in Asia, mental disorders are still taboo and people are reluctant to get their children diagnosed. I notice this happening in Singapore, especially when people directly stare at my brother in disgust.

In any case, current ideas of Autistic symptoms definitely lead me to the conclusion that the symptoms may not be universal around the world.

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Link to AQ questionnaire

http://archive.wired.com/wired/archive/9.12/aqtest.html

References

1) Freeth, M., Sheppard, E., Ramachandran, R., & Milne, E. (2013). A cross-cultural comparison of autistic traits in the UK, India and Malaysia. Journal of autism and developmental disorders, 43(11), 2569-2583.

2)  http://sfari.org/news-and-opinion/news/2011/researchers-track-down-autism-rates-across-the-globe