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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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Snowman

My Christos went to the mountains.

He didn’t play, or feel it, or build a snowman. He posed for this picture and sat eating his favourite Lays Salt & Vinegar crisps and his favourite Lipton Lemon Iced Tea.

If he could talk, he would tell his mum that he is having a great time. That he is grateful she takes him on day trips and spends her day making this daily/weekly/monthly schedules. He would say how happy he is for letting him sit in the front seat and take complete control of the radio, and say sorry for shouting at her when she tries to sing to her favourite songs or tries to turn it down; it’s just how it sounds. Instead, he gives her a big bear hug, and dances by shaking his head, waving his hands and trying to sing.

The mountain air, the white scenery was beautiful and Christos decided to enjoy it in his own way. Not by running around in the snow and ruining it. It fit perfectly with his Car Routine certain voices, certain notes, a certain volume pleases his sensory overload. Instead of hearing the rushing of cars on the highway, the nooks and cracks of the car, conversations he cannot take part in, he prefers to have his songs on loud and enjoy them that way.

For that short time he hears one thing, he sees only one thing.

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A walk

Chris is in the middle of his ‘Dad Routine‘, he loves walks by the sea, on a sunny day, with daddy.

If he could talk, he would tell his dad that he is having a great time; instead, he shows him with the shaking of his head, and waving of his hands, the excited laugh and his hugs. The fresh air, the sounds, it all helps with sensory overload and sensory sensitivity for your kids; if they are deprived the stimuli of a walk and the sea are endless. If they are overloaded, like Christos, the exercise helps burn off energy, it relaxes the mind and makes him smile. He finds it easier to express his state of mind, his happiness and excitement.

If he could talk he would tell his dad how exciting it is to take that walk – from our house, down that long road, past all the places he knows so well, to the roundabout, past the Aquarium, towards the small church and down to the beach.  The hard pavement turns into dirt, an uneven walk through the nature, with sounds changing from car engines to the rustling of the tree leaves, the colours come alive, the stones, the sand lead to this place. He would explain to his dad how soothing the breeze is to his sensitive, overloaded skin and how the salty smell of the sea has become something that he associates with home. It leads to this place, a scenery of neverending blue pleases his sight, rests his tires eyes which are overloaded every day. The constant, steady movement of the water sends off a vibe that relaxes his mind, and the resounding sound blocks out all the unnecessary sounds from his sensitive ears. For that short time he hears one thing, he sees only one thing.

Happy Sunday.

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The [A] word: [T]ired

Tired of being up all night.

Tired of feeling helpless.

Tired of not feeling good enough.

Tired of feeling like we make no progress.

Tired of being ignored.

Tired of being excluded.

Tired of people staring.

Tired of being treated like we are different.o_dente_de_leao_da_consciencia_do_autismo_deseja_o-r079a3806e36c40388746113b553c5e46_wvw_8byvr_512

Tired of being to comply to society’s expectations.

Tired of being compared to ‘normal’ kids.

Tired of people not understanding.

Tired of screaming.

Tired of trying to make them keep up with society’s latest definition of ‘normal’.

Tired of being stereotyped.

Tired of people who don’t understand Autism.

Tired of people who don’t make an effort to understand Autism.

Tired of people drowning in their ignorance and prejudice.

Tired of the consequences this has on our kids.

Tired of the pity.

Tired of assumption.

Tired of not being heard.

 

You can be tired, but you have to never give up; you can fall, but you have to get up. Make them listen; make them see; make them aware.

We, the families, have only one wish – help us make it reality & learn one new thing about Autism.

 

*Want to make a difference? I know you

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Making Routine Flexible d) Chris & his Dad routine

Thephoto 2se two are the men in my life. They are confident, strong fighters who not only have the endurance to plough through their own problems but somehow manage to be my inspiration and driving force in everything I do. It’s hard to put into words how much he’s done for Chris, for all of us. Currently, he’s working 12+ hour shifts as a chef in one of the most popular hotels in our area. I didn’t see him much while I was in Cyprus but I know that everything he does is for us. He worries about our past/present/future, health, happiness; everything.

When Chris got diagnosed he was a rock. Both my parents became glue – they never gave up, they never let go. They did absolutely everything. I never remember them breaking down, or crying; they did it at their own time. No one can understand the pain of a parent of autism. No, not because the child is autistic, but because they are helpless against it. I never remember them falling an picking themselves up; they were always up, ready to go.

 I’ve talked about my dad’s sacrifices, how he developed a whole menu for him in previous posts so, for now, back to the routine business.

If you’ve been reading previous posts, the theme is that an autistic routine is not the same for the entirety of someone’s life. There are people who live their lives following one single regime, because like i said before no two people on the spectrum have the same symptoms.

 When he spends his time with my dad, he likes to play with a box of beans. This is a Winnie the Pooh box containing beans (ranging over the years from black eyed beans, broad beans, kidney beans, lima beans etc). Much like the whipped cream mentioned in previous post the texture, sound calms him down. It relaxes him and he looks forward to it. It’s important to not condemn such repetitive actiphoto 5ons. Autism has certain sensory needs that we cant understand, so when an activity meets those needs its important for us to let them go through with it as  often as possible. Other than that, he likes to play Wii Olympics which he is very good at, he used to play with his (my) game boy, watch cartoons (generally looney toons, Hysteria, Tom and Jerry etc) or Disney films.

They will prepare his meals together, like i mentioned before we have a special recipe for everything he eats and he loves helping and contributing to the process. He can basically make egg and lemon soup, curry, rice, pasta and sauce by himself but obviously we supervise. He also likes all the dishes to be cleaned up, he used to take care of his own but somehow fell out of the habit of doing so. This is one of the downfalls, you juggle so many things with the routine because everything that comes naturally to us doesn’t to him. He has to see it in his programme and if it slips through the cracks a couple of times its a struggle to get it back in. The first day I arrived I asked him to wash his cup – we fought for 5 hours – he did it but i never heard the end of it. When my dad isn’t working crazy hours they do activities together. They take walks to the beach, they use to play catch, tennis, ride his bike, but the one activity that Chris asks for is going to church. There’s a little church near the sea close to our house and my dad does the unofficial maintenance. They go there every week, sometimes more regularly, and I don’t know what it is but he loves it. Maybe its the calm, maybe its the routine.

My point is, you can demolish their wall, you can break their routine, you can make them listen. It takes strength and patience, consistency and persistence; and I know you have all these qualities.

When you see that kid on the playground that seems a tad too old to be there, or uninterested despite their parents every effort, be kind. It takes a lot more effort to ignore autism than to embrace it. Don’t condemn our kids to being alone in the playground. Educate yourself, pass it on to your children. Make our world accessible to everyone.