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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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The A word – Acting

Image result for travis smith the a word

Episode 1 of Season 2 introduced us to Mark. He is cast as the son of one of the mums in the autism support group that Joe’s parents attend. He holds his plate and tea and stands in the background while mum has a conversation. You can’t miss him, even in the background, his TV mum jokingly mentions that he’s 6ft3. He doesn’t sit until his mum asks him to sit down and tells him exactly what they will do; he will sit and have his tea while mum has a conversation and then they will get on the bus and go home. He repeats this back to her.

For a lot of people this interaction will mean nothing. For me, this interaction is why I will be watching The A word again tonight. That moment is our entire life with Christos. Telling him what the plan is, every hour is accounted for. It started with pictures (Picture Exchange Communication System) on a board, then printed out schedules on the fridge, and finally it became a conversation. I remember my mum putting together this schedule for him every night; at 6.30am we wake up, at 6.40 you brush your teeth, at 6.45 we get dressed, at 7.00 we drink tea and at 7.15 we get in the car to go to school.

image (17)We used to have the whole week planned out and changing the plan was a nightmare. As his speech therapy progressed we put pictures and words together and formed sentences which he had to say before he got what he wanted. I found some examples which you can see in this picture. Once he familiarised himself with all the pictures and the sounds, he didn’t need them anymore. He could form sentences all by himself and name anything in the house. Now he has a weekly plan. He knows months off by heart and has a sense of how far away or close they are. So, for example, when I will visit again, or when he’s going to start going to the beach, which days he stays with my mum or dad and which days he goes to my grandparents etc.
Travis Smith, who portrays Mark, is an actor with autism and this episode was his acting debut. Travis is working at ABLE Radio through an initiative which aims to boost the employment prospects of 1000 young people with a learning disability and/or autism. Engage to Change. He secured the ABLE Radio placement which has been helping him develop his skills, and is working towards realising his dream of acting and singing for a living. “There is nothing else that matters when I am acting,” Travis says. “Just before I do it, I am petrified but, once I am singing or acting, I lose myself.”
Joe is not the kind of autism I grew up with, but Mark is. A gentle giant that is shy and loves a plan. I feel that we will be seeing more of Mark as the show goes on, and I hope that we will see many more representations of autism. When you watch tonight’s episode of The A Word (BBC One at 9pm GMT) look at the details, don’t just listen to the words. Notice the hidden looks, the things parents do that look like routine to them but aren’t routine for you. Look out for Mark and you might see a bit of Christos in him too. It is breathtaking to get to witness a young adult with autism do what he loves. It is inspiring to watch Travis break free from the stereotypes of what people on the spectrum can and cannot do.

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Our Golden Hat will go on – #APD2017

It’s Autistic Pride this Sunday – 18th June 2017. In honour of the day I will be writing about different foundations from all over the world and how you can help.

“After watching A Mother’s Courage: Talking Back to Autism with my daughter, she turned to me and asked, “What if I wasn’t able to tell you I love you, mummy?”” – Kate Winslet (aka Titanic aka A-list Hollywood actress aka autism advocate).

Co-Founders Kate Winslet and Margret D. Ericsdottir met when Kate recorded the English narration for Margret’s documentary, A Mother’s Courage: Talking Back to Autism, which captured her journey to find a way for her nonverbal autistic son, Keli, to communicate. Throughout her journey she visits scientists and families all seeking  a way to get to know the person behind autism better. To get to know her son.

The Golden Hat Foundation is a non-profit organization dedicated to changing the way people on the autism spectrum are viewed by society. They focus on abilities and potential, education and career training. Long-term goals include the establishment of innovative post-high school campuses designed for people on the spectrum.

This is a great organisation to support and follow. Here is what you can do:

  • Learn more about the organisation
  • Subscribe to the monthly newsletter
  • If you are in Texas, attend one of the Meetup Groups and share your experience
  • Volunteer
  • Donate
  • Visit their blog

In July 2015 I wrote an article for Autism Daily Newscast: 5 things my brother’s Autism stole from me and the Golden Hat Foundation shared and retweeted Christos’ story.

The Golden Hat11752398_10153455833490030_5815753847288641852_n
This boy had a golden hat.

The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.

I think the great thing about The Golden Hat Foundation is that it is a partnership between two mothers, whose experiences with motherhood are exceptionally different. Yet, they come together because they are both mothers. Just like we need to come together, despite our lifestyle differences, because we are human.

Happy Autistic Pride Week!

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When Will We Learn?

I’m not going to write about the atrocity that was the US Election – here’s what i felt a year ago #Project324 Trump, Republicans and Disabilities, oh my.

I’m going to write about hope, the future. I’m going to remind you that you can change things, that you need to be strong in the face of racism, discrimination and unfairness. I’m going to ask you to take action, to not let this perversion become our legacy. I’m going to ask you to think about what world you want our kids to grow up in and what we can do right now to make sure they do.

Ambitious about Autism is an organisation i work with, they’ve put on projects like: #EmployMe for which I wrote –  What happens when you turn 18? UN International Day of Families for which I wrote – A letter to my autistic brother on his 18th birthday . Fun fact – I wrote this in 15 minutes and cried the whole way through, I haven’t read this since it’s been published. Maybe fun isn’t the word for it. Autism Friendly – Ambitious about Autism supported a London-based restaurant in winning the first of the National Autistic Society’s Autism Friendly Awards. Making the world Autism-Friendly Back to School – School Bells

Their latest is called #WhenWillWeLearn. The ambition is to make the ordinary possible for children and young people with autism. They provide services at schools and colleges, raise awareness and understanding and campaign for change. 

And they don’t give up. Their campaign asks you to write to your MP (if you are in the UK). Those of you outside the UK can write to your local authority, or you can write to me – I would love to forward your letter to our MPs, because it doesn’t matter where you live. A small change can resonate around the world – that’s the beauty of awareness, it doesn’t have borders. Sign up to show your support: ambitiousaboutautism.org.uk/pledge-your-support or email me.

The campaign highlights that:
80% of children with autism experience anxiety every day about attending school;
45% had been illegally denied their right to a full education;
Over 1000 parents are forced to take legal action every year to get the support their child is entitled to;
42% of classroom teachers say their training doesn’t prepare them to meet the needs of children with autism; I wrote about this here.

So, please don’t give up. Because we have made a difference already; businesses introducing schemes to train people on the spectrum like Ford, Apple, Microsoft etc; stores introducing quiet hour to accommodate autism; TV shows are introducing characters on the spectrum; theatres/cinemas are catering for autistic youth; ‘neurodiversity’ is an official term and it’s all because of all of you, reading about autism and not giving up.

15007644_10154605350205030_2088488013_oI traveled to Venice on the 3rd November and, incidentally, it was also the day that Gatwick became an Autism Friendly airport. A ceremony was held but I didn’t know about it until later when i was stuffing my face with gelato and thinking about how much Christo would love it. The airport was presented with an award by the Chief Executive of the National Autistic Society to mark the achievement. Gatwick met a range of Autism Friendly criteria to help passengers, their families and carers, it has been praised for providing clear and accessible information for passengers about the airport and the assistance available to help plan for their journey. Staff have been specially trained to help assist autistic passengers and a hidden disability lanyard system has been put in place. HOW EXCITING. I wrote about Chris at the airport here. I know, I’ve referred to my own writings a lot in this post but it just goes to show that the information is everywhere, and it’s only a click away. So, click.

It’s up to us – we have to do this, we have to write, speak, call, email, visit, shout about all the things we want and by doing it for our own, we are doing it for everyone; one step at a time. Now, more than ever, we need to unite. We need to be one and we need to make our voices heard, because they did – so why can’t we? Now more than ever, we should recognise the power or the people. Because it was people that did this, and it will be people that change it.

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The end of Chapter 3

Earlier this week I found out that i have finally passed my Legal Practice Course; an LPC is the vocational stage of training to be a solicitor that must be taken after completing a law degree and before practicing. This means that after 8 years of being a law student, I am done. I was trying to describe to my friends how happy I was to receive the news and I couldn’t find words.

If you are a regular reader, you know that this was part of my life plan. I moved away from home, I’ve been studying since 2008 and working alongside my studies to set down the cornerstones of the life Christos will have to join eventually. This last month has been a tough one. My nan was in hospital for 3 weeks. My nan, or my 75137_10150101622680030_3087748_nyiayia, is a 2-time cancer survivor, she’s worked since she was 14 and she raised us all with such love. She loves a good sing-along, a western cowboy film, she knows how to throw a good party, she loves a good beer with her lunch and a whiskey on special occasions. She looks amazing; i know I’m biased but look at her! She always takes care of herself even though she worked 16-hour days, she never said no to a customer or an ill aunt, she was never too tired to run around after her grandchildren and I’m so proud of her – I used to borrow my yiaya’s jewelry and shoes, that’s how cool my yiayia is. She’s one tough cookie. I love my yiayia, she makes the best food, the best tea, toast and jam, she makes the best cakes (she owned a confectionery), she cries every time we speak and she rubs my feet even though hers are way more tired. I love my yiayia the most though because of how she treats Christo. I talk a lot about how our family felt after the diagnosis but my nan and granddad were right there with us. They went through all the emotions, all the ups and downs. They picked us up from school, babysat, they took Christo to speech therapy, to the oxygen chamber appointments, they watched the Lion King a thousand times, they picked up after  a tantrum, they always had a stash of calming treats, they stopped singing because he doesn’t like it and they never gave up on him. She has been a support to us and to Christo for as long as he has been with us. She knows his language, his schedule and how to bribe him for kisses and hugs. Christo knows he has to respect her, he knows which buttons to push and he knows that every time he says ‘yiayia’ she is ready to give him the world. I love the way they love him because it looks like the way i love him. It’s my only consolation, knowing he is loved that much every day I am not there.

By completing the course, I’ve ticked off a big box on my preparation list for our future. It’s something I have been working on for years, it’s the one thing I’ve worked so hard on, it’s what i will base the rest of my life on. And it’s done, it’s just there now waiting to be built on – waiting for me.

The end of the LPC is the end of the first big chapter in my life. 2 years of 4000 words every 10 days, 17 exams, sleepless nights, lots of wine, and lots of tears and it’s over. I breathe a sigh of relief before I move on, i take a moment to leave this behind and digest what it all means. In my head, everything i did was a step closer to the end game – the LPC was about 150,000 steps. I can look at my brother now with confidence, with certainty that we are going to be okay. I like to think that if he knew he would be proud, I like to think that deep down he knows. I can look back to when I left him to study in Lancaster and not be struck down by guilt; because after 8 years i did what i left him for. I think of all the birthdays i missed, all the tantrums, all the times he needed me and even though i can never go back and be there, it wasn’t all in vain.

Stay tuned for Chapter 4 of Life with the Pereras.

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School bells

Memories.

I have recently become more aware of the fact that i have blocked large chunks of my childhood and school life from my memory. There are things I don’t want to remember so at some point in my adult life i decided to put all those years in a black box and bury it somewhere. Unfortunately, that means that I also buried a lot of Chris’ early years, so many fun times with so many good friends that I only remember when they remind me. Even then, it’s like a dream, like it never happened to me. In primary school, i was bullied for the majority of my time there. All I remember is being super in (puppy) love with a boy, a doll house on my f74945_10152065431390030_291941620_nirst day, my favourite teacher and lots and lots of tears. I was bullied because i am not white; even though everyone in Cyprus is tanned. I was thrown down stairs, spat on, thrown in holes, in SKIP bins and verbally abused almost daily; I have scars on my knees, arms and face to this day. In high school the abuse settled and I made friends that I have to this day. Life at home was not great and I don’t remember most of those years either. I have a tattoo and a piercing to reassure me that i did go through a rebellious phase. I don’t remember what people thought about me, who wanted to be my friend and who didn’t. I don’t remember feeling like an outcast or being popular. I don’t know who i had lunch with every day. I know i had people that loved me, and that’s so enough, and so comforting.

I read this recently.

Several times lately I have tried to remember my time in middle school, did I like all my teachers, do I even remember them? Did I have many friends? Did I sit with anyone at lunch? Just how mean were kids really? I remember one kid on the bus called me “Tammy Fay Baker” bc I started awkwardly wearing eye liner in the sixth grade, I remember being tough and calling him a silly name back, but when he couldn’t see me anymore I cried. I do remember middle school being scary, and hard. Now that I have a child starting middle school, I have feelings of anxiety for him, and they can be overwhelming if I let them. Sometimes I’m grateful for his autism. That may sound like a terrible thing to say, but in some ways I think, I hope, it shields him. He doesn’t seem to notice when people stare at him when he flaps his hands. He doesn’t seem to notice that he doesn’t get invited to birthday parties anymore. And he doesn’t seem to mind if he eats lunch alone. It’s one of my daily questions for him. Was there a time today you felt sad? Who did you eat lunch with today? Sometimes the answer is a classmate, but most days it’s nobody. Those are the days I feel sad for him, but he doesn’t seem to mind. He is a super sweet child, who always has a smile and hug for everyone he meets. A friend of mine sent this beautiful picture to me today and when I saw it with the caption “Travis Rudolph is eating lunch with your son” I replied “who is that?” He said “FSU football player”, then I had tears streaming down my face. Travis Rudolph, a wide receiver at Florida State, and several other FSU players visited my sons school today. I’m not sure what exactly made this incredibly kind man share a lunch table with my son, but I’m happy to say that it will not soon be forgotten. This is one day I didn’t have to worry if my sweet boy ate lunch alone, because he sat across from someone who is a hero in many eyes. Travis Rudolph thank you so much, you made this momma exceedingly happy, and have made us fans for life!

Leah Paske – Bo’s momma

School is.. an experience. Some of us forget, some of us grow out of it, some despair and some thrive. We were all insecure, we all had self esteem issues, we all wanted company. How much easier would high school be if we just didn’t care though? If we didn’t shield ourselves, change our habits and go over and over every single word, pause and comma we used throughout the day? Some may say it’s because they don’t understand; that’s not true. Chris understands so much more than we give him credit for. Our kids are free, they are untouched by the weight of fitting in. Their spirit is unspoiled.  They get to be themselves without the fear of judgement. They can sit and have lunch alone without a care in the world, without trying to impress. I’ve talked about this before; the things we worry about are reflections of how much we are affected by the standards imposed on us by our community. We worry when they play alone, when they don’t get invited to parties, when people stare. We worry because we don’t understand what it’s like to live life without constantly trying to fit in.

I’m grateful for his autism too Leah. I am thankful i get to look up to a boy who is completely, carelessly and overwhelming okay with just being himself.

For the first day (back) at school if your kid has autism:

  • Dress them in their favourite clothes. If they have a uniform (get it from M&S) do a couple of trial runs before the first day so that if there’s anything uncomfortable you can sort it out before.
  • Pack their bag with them. They should know what’s in there and they should have a say in what’s in there. Make sure it’s stuff they have used before and it’s not all new and shiny.
  • Take them for walks around school (if you haven’t already) to familiarise them with the area. If you can meet teachers before hand – even better! Take the backpack with you, with lunch and maybe even wear the uniform. This way they know it all goes together.
  • Make sure the teacher knows how to handle questions, and that you are available to talk to the classmates about autism. Pretending like autism is not there is not the solution, it’s not acceptance.
  • If they have stimming toys, pack them.
  • Do a trial run of the early wake up.
  • Make a schedule and sit down and go over it with them.
  • Don’t make it a big deal. I mean, it’s the biggest deal EVER, but don’t create expectations they have to live up to.

If your kid doesn’t have autism talk to them about it. Chances are, they will come across someone on the spectrum during their education and you have to be able to answer questions. Learn about autism, educate yourselves, your children, your family. School doesn’t teach us everything, so be proactive, be positive, be generous and be inclusive. By teaching your kid about autism you are making someones school year bearable and you will make an autism family’s life just a little bit better.