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April 2018: 2 Science Headlines

1/ Social pressure

A drug is being tested which claims to help people on the autism spectrum with social skills. Balovaptan, said drug, acts on receptors. Receptors are located on the outside of cells and communicate commands to the inside of the cell. There receptors receive a hormone called vasopressin, which is a hormone from the brain which influences social behavior. Balovaptan is designed to block a receptor of a specific vasopressin, which might be linked to social anxiety says Larry Young, professor of psychiatry at Emory University. Basically, the brain sends vasopressin to cell receptors and some of these hormones affect social behaviour. This drug might be able to prevent the hormones affecting social anxiety. Behavioural “symptoms” of autism can be identified (but not limited to) as trouble in communication and interaction.

The idea of using drugs to change characteristics of people on the autism spectrum to “fit in” to a neurotypical society is worrying. That being said, it is important that such medication is available for the safety of the people that need them and for the mental well-being of the people that make the decision to take them.

We all have some form of social anxiety. Whether its tapping fingers, playing with your hair, flapping arms or other forms of stimming. People on the spectrum are under pressure to behave neurotypically to avoid bullying, rejection, discrimination – referred to as ‘masking’. This may be a solution for some but there’s a better one – it starts with ‘aware’ and ends with ‘ness’.

2/ Genes

Remember the MSSNG project which highlighted “an additional 18 gene variations linked to the development of ASD. Nature Neuroscience Journal, published a report on this project which found that the 18 newly-identified autism genes can be instrumental in understanding the pathways in the brain that affect how cells ‘talk’ to each other.” (The Biology of Autism)?

Remember the research published by Princeton University and Simons Foundation researchers where they analysed the human genome to try and predict which genes are likely to cause autism? They had linked about 2,500 genes to autism; we have an approximate total of 24,000. (Mr Autastic)

WELL: Researchers have found alterations of the gene thousand and one amino-acid kinase 2, known as TAOK2, which is so much fun to say out loud. The alterations found are thought to play a direct role in neurodevelopmental disorders, including autism.

Karun Singh, study co-author and researcher with McMaster’s Stem Cell and Cancer Research Institute said: “This is exciting because it focuses our research effort on the individual gene, saving us time and money as it will speed up the development of targeted therapeutics to this gene alone.”

img_6972Science is on its way to delivering answers to what causes autism. They are closer to finding out how to predict autism, and, as a result, closer to finding a way to prevent it. In the  meantime, it’s up to you to ask questions, to include to shatter stereotypes and to embrace the people around you.

 

 

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Atypical:

Just binge-watched the much anticipated Netflix Original series ‘Atypical‘. The series follows Sam, who is on the Autism Spectrum, on his journey to finding love.

Even though its sold as a comedy, the show made me ugly-cry a lot more than it made me laugh out loud. The show presented many big and small moments that I have experienced first hand. The autistic lead is sincere and very well portrayed. You can see the extensive research that went into developing the ‘Sam’ character and he delivers quite well, in my opinion. Obviously, not everyone on the spectrum is like Sam, but I think this series is more about the family rather than the lead.

I can’t think of anything I disliked about the show, although you’ll hear a lot of self-proclaimed experts throwing shade at every opportunity. To them I say, appreciate the effort of incorporating an autism story into something as mainstream as Netflix. To you I say, watch it. Remember, not every person on the spectrum is like Sam, but this is a good starting point.

What was the inspiration for the story?
Robia Rashid says: “After working in network TV for a while, I just wanted to do something for myself. I was very aware that more people were being diagnosed with autism, and it was interesting to me that a whole generation of kids were growing up knowing that they were on the spectrum and wanting independence. That point of view seemed so interesting to me — and such a cool way to tell a dating story. You’ve seen the story of somebody looking for independence and looking for love before, but not from that specific point of view. I really was drawn to that. I was a little annoyed because it sounded really hard! I had to do a lot of research. A turning point was when I figured out that I wanted to use Sam’s voice-over. But it was both helpful and harder because it made the project much harder to write.”

Your son has the same desire to be loved that we all do.” This was the sentence in the trailer that made me want to watch Atypical. (I write about love here a lot)

I saw a lot of myself and my family in the Atypical family. The mum’s passion, making her life all about autism for so long that she forgot to live her own. The dad’s sweet disposition, feeling a disconnect to his son but making silent gestures to show his everlasting dedication to his family.

And of course, the sister. Sam’s sister spoke to me more in what she left unsaid. Watching the show as an autism sister I saw in her all the thoughts I have had in the last 19 years. I have so much in common with her and her family life. Not the obvious, as I am anything but a track star. Her triumphs are overlooked, her life is dependant on her brother’s and her future hangs in the balance. Sam says his sister never lets him get beat up as she instinctively steps in front of him when someone asks what’s wrong with him. Yet throughout the series she playfully punches him, hits him, climbs over him and jokes about his quirks. Casey (the sister) is so well written as a character she made me cry every time she was on screen.

Casey’s success is overshadowed because her family is preoccupied with Sam. When she meets up with them, she doesn’t hold a grudge. When her big news is obscured by what will happen to Sam, it’s her boyfriend who makes a scene about it to the parents. Casey knows Sam is paramount, she knows because she wants him to be. She struggles with deciding whether to ‘move on’ and do what’s best for her or to stay and help Sam through the hard times coming in the household. I lived this struggle. She is fearless when its comes to her brother and telling people to back off. She is his.

I can’t wait for season 2 of Atypical and I know it will be just as touching as the first. Well done Netflix. Well done to Robia Rashid for taking this on and doing it so well.

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Hope in millions

I just finished reading A Change of Heart. If you haven’t read it, do it right now. The next one on  my list is Inferno by Dan Brown. I had pre ordered it when it first came out and I never got around to it. Dan Brown books are the kind of books which you remember where you were when you read them. They are a journey of self discovery and they speak to each reader in a different way. Robert Langdon, the lead character, is a professor, a researcher, he is constantly looking for answers and is known for a brilliant problem-solving mind and his genius. 17195164_10154982012445030_1234091914_o

Autism can feel like a Dan Brown book some times. *Spoiler alert if you haven’t read them*

Angels and Demons is the beginning: Strange disappearances (being the diagnosis), a secret society that has infiltrated many global institutions, political, economical and religious. Autism has been around forever, but we didn’t even know what autism was in the 90’s, in Cyprus. We couldn’t Google it. It was spoken about in hushed tones and behind closed doors. When the vaccination scandal broke out and was the rebuked the conspiracy lovers amongst us looked at the big corporations, the big boys and wondered what we weren’t being told. As soon as we started researching, looking, reading we uncovered a world we had no idea existed. A powerful word and a condition so complex we had to dig deeper before we even scratched the surface.

The Da Vinci Code is the road to acceptance. It starts with murder (like all the books) that hits close to the heart. To us it was like all the dreams, hopes we had for his future had disappeared after the diagnosis. We set out on a journey to find the reason behind why this had happened. Langdon tries to solve the mystery of this ancient secret society. He breaks codes and solves puzzles. We broke sanity barriers and solved puzzles. Our Holy Grail was finding out how to reverse this. However, when he spoke his first word, we found out that all we had to do was love him for who he was. The answer is in his heart, in our love for him. He was the Holy Grail all along.

The Lost Symbol is about growing up, about realising what you are made of; a severed hand, the story of the prodigal son resonates throughout the book. A son away from home, who always had home with him. It reminds me of leaving Chris to come live in the UK. True, I do not think of myself as the angel Moloch, nor do i intend to. But throughout the book Langdon is submerged in his research around the hidden Ancient Mysteries whose knowledge is now lost to mankind because we have stopped looking at it the right way. The Lost Symbol is  knowledge. Knowledge by education, by research, by constantly learning. That’s what awareness is all about, knowing ones self is the missing key that prevents humans from realising their true potential; that there is a bit of divine in all of us. Whether we are neurotypical or neurodiverse.

This months hope is found in research.

Edinburgh University has been given £20m for autism studies. The Simons Foundation has made the contribution hoping to delve into the biological mechanisms that underpin changes in brain development linked with autism. You may remember – or not – that the Simons Foundation was also the foundation i wrote about in 2016. (see below)

Scientists based in the university’s Patrick Wild Centre for Research into Autism, Fragile X Syndrome and Intellectual Disabilities will use advanced techniques to probe brain development in the presence of DNA changes known to cause autism. They will be looking into the wiring variety of the brain and how it can affect how it can processes information.

There are so many on going projects around the world regarding autism right now. The poo research, the discovery of ASD genes that have never before been linked to autism show that we are now committed to investing big sums in search of a holy grail, a Word, a lost symbol. We are venturing out to the unknown in search of a gene, a pattern, a puzzle piece.

Stay tuned for Inferno.

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University of Kent: Imagining Autism

Imagining Autism is a research project conducted at the University of Kent using a range of environments and stimuli and evaluating their encounters with such various interactions (ie lighting, sound, physical action and puppetry).

Sensory Integration Therapy: 

It has been found that people with Autism  have sensory difficulties. I know I’ve used this before but here’s a bit more about it. Again, not all autistic people have this difficulty because (say it with me) no two people on the spectrum are the same.

This sensitivity can be either over- or under-responsive to sensory stimuli or the ability to integrate the senses. It can cause extreme reactions (tantrums, hitting, banging of hands, legs, head) or it can be completely tuned out. So, for example, a sound is perceived differently by people affected by autism, it can be extremely disruptive to them and cause them to act out – because their sensors are overloaded. Another example is taste. Like I’ve said before, it is/used to be a ritual trying to get Chris to try food. He tries it, smells it, stares at it before finally deciding to eat it or throw it as far away as possible. These can also be examples of under-responsive behaviour. Where they don’t react to sounds or noise, which is also the direct cause for parents testing their ability to hear first before anything else. There’s are people on the spectrum that have no appetite for food. If it is not presented to them they wont ask for it, taste isn’t one of the senses that are developed and therefore any food is mundane. When taste is hypo its referred to as ‘pica’ and could also mean that they eat anything – soil, grass, play-dough – because it makes no difference.

SI therapy is similar to the Kent project in that it assesses the persons sensory capacity and it looks for ways to enhance or control it. In this case they looked at a series of sensory environments like outer space, under the sea and the Arctic through drama and performance based activities.

There’s no such thing as a lack of information on Autism. There is a general ‘meh’ attitude towards it though and I’m proud to be working for an institution that dedicates resources to such research.