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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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The Autism Political Correctness Issue

A big issue many people have with is the idea that autism needs to be cured. Let me remind you, autism itself is a social, communicative neurodevelopmental disorder diagnosed purely through behavioural symptoms such as repetitive and ritualistic behaviours that are quite easy to accept in an open-minded society.  It is the co-morbid symptoms that really affect their ability to be seen as typical. These symptoms include epilepsy, depression, anxiety, sleeping abnormalities, sensory issues, Fragile X syndrome, ADHD and intellectual deficits. Do many of these sound familiar? Are there “cures” for them? Yes and yes.  Therefore, we’re not trying to cure their autism but merely the negative co-morbid symptoms!

After reading many posts on autism online, there is evidently a great public dissonance between the idea of accepting their child for who they are and their attempts at trying to improve their behavioural symptoms. It’s not one or the other; you can be both accepting of your child’s autism and also be working hard to find ways to help their symptoms. On the one hand, by improving the negative co-morbid symptoms, you’re also attempting to make them more typical and on the other, you’re trying to soothe their discomfort and show them how much you accept their unique personalities. Remember that weird kid in class? Did you accept them for who they were? That’s great if you did! How about the other kid who always self-harmed? Did you try to help cease their self-destructive behaviour? If it was your own kid you would! Letting them have their own personality is completely different from trying to stop their self-destructive behaviour.

Is it degrading to call someone low or high functioning?

For me, when I say low functioning, I refer to autistic people who cannot live independently, constantly self-harm, have intellectual deficits and cannot communicate well with others. There is no name calling here, just a way to communicate the necessary level of support needed. My family refers to Chris as low functioning, due to his inability to live independently, read and write, and communicate efficiently with us. The fact that Chris can spell and read and few words makes me think that even though he is 22 years old, with the right motivation, he can probably learn to read and write properly at some point. He is verbal although it is in broken English and I personally think he still has it in there. True, sometimes I think the label “low functioning” is unfair because I feel like he hasn’t been given the right interventions yet. But realistically, at this point in time, he is on the lower scale of the spectrum and needs a lot more support from us.

I’ve also seen many posts calling for Neurodiversity now, which is absolutely brilliant! However, there is no need to get so carried away with being politically correct all the time. It is difficult to be politically correct all the time. Everyone has opinions, whether they are right or wrong, it is up to all of us to politely educate them to look at broader perspectives. Autism is an incredibly heterogeneous disorder (and yes, some people don’t want it to be called a disorder… boy do I know…) and if I look at my brother it is anything but a disorder in clinical terms.

We have come a long way from calling autistics retarded, stupid and insane. While society has moved away from such name-calling, we still have a long way to go before everyone can actually feel included. For this to happen, it is important for everyone to get educated about Neurodiversity and learn how to engage with people with social and communicative difficulties.

#StopFightingStartEducating

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What is it like?

This month is Autism Acceptance Month! I’d like to share this short piece with you all.

What is it like having a younger brother on the low-end of the autism spectrum?

I have three words –

Heartbreaking:

Imagine seeing a loved one remain trapped in a body; unable to communicate their feelings easily to others around them. Imagine the isolation they must feel not being able to convey their pain, joy, and sadness, while others look on in pity, disgust and fear. Imagine what goes through their heads, as they self-harm and draw blood in the process. Is self-harm a release from our inability to understand them? Or is it just a way to make them feel more alive?

Eye-opening:

The disorder itself is so diverse; one becomes extremely aware of the multitudinous differences in personalities not just in people on the spectrum but also in neurotypicals. Seeing Chris struggle with social communication, daily tasks and the lack of motivation to do anything else because no one believes he can is hurtful and eye opening. It makes you see how valuable it is to be more accommodating and understanding to others no matter how difficult they may be to interact with. You realise that neurodiversity can actually be an exciting thing and welcome it. Being more aware of what people go through is invaluable.

Humbling:

You have a shiny, new Gucci handbag? You had a smashing time in Barbados? Got a job at Wall Street? Fantastic! All these pale in comparison to the joy I feel when I see Chris happy. He doesn’t need these things. He knows not the meaning of their value or why people covet them. In the grand scheme of things, they are utterly pointless commodities unless you have friends to share them with. He doesn’t understand the concept of friends. I don’t even know if he understands the concept of family. How can I know? All I can do is continue to show him unconditional love and understanding.

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Christmas Brunch in Singapore