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Friendship

Friends are a funny concept aren’t they? You meet this stranger and you’re like “You. I want to do random things with you forever. I want to share my life with you. I wanna tell you all the stupid things I think of.”

I have three friends that I have known most of my life, and whom I adore beyond measure. These girls are the girls that cry with me when I talk to them about Christo, they get mad with me when I tell them a member of my family was mistreated, they laugh when I tell them I fell over, and check on me and my family when one of us is unwell.  These are the girls I don’t talk to every day but I would run to if they needed me. I love them with the kind of love you love your own. I love them because they love my family with a love you haven’t experienced before, and vice versa. One of them helped with #Project324 last year (you know its you papaokori). One of them makes me laugh like there’s no tomorrow and is my soulmate.

My point is that these people are embedded into my soul and they love my brother as much as i do. I want to tell you about something extraordinary one of them is accomplishing today. She currently holds 3 Guinness Records:

  1. The Longest time in an abdominal plank position (female) is 3 hours, 31 minutes and 0 seconds
  2. The Longest time in an abdominal plank position (female) with 60pounds on her back is 23 minutes and 20 seconds
  3. Most handstand pushups in 1 minute is 35 pushups in 31 seconds

These 3 records she broke to prove to the world that you can do anything you set your mind to, despite all odds.

Today, 21st July 2017, she is attempting to break another World Guinness Record. This time she’s doing it for a little girl called Stavriana. She will be attempting to break the record of 1206 knuckle push ups to 1300 knuckle push ups in 1 hour.  Stavriana suffers from Cornelia de Lange syndrome and Crohn’s desease. She is only 7 years old. She is the youngest of 5 siblings, all under 18, and is being raised by a single mother. She is in pain every day and the money is being raised to enable her to travel to Israel for an operation that will make life a bit easier for her and her family. The aim is 50,000 euros. You can donate through paypal at https://www.paypal.me/helpstavri

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I could write pages about how inspiring this woman is. But I will never be able to  tell you how she makes me feel. This girl is magic. People around her love her because of how unapologetically she loves people.

She has overcome medical predictions and countless hardships in life. Yet, she is always the one giving. She is always the wise one, the funny one, the one you go to. The brave one.

I know that our town, our island will embrace you and Stavriana today. I know that they will give, and make you proud. I know you won’t expect the love you will be suffocated with today. I also know that no one deserves this more than you.

No good luck needed. I’m with you,  my sister.

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The Biology of Autism

  1. The gut.

You may recall me talking about a ground-breaking new study in January (Hope in Poo) where alterations in the gut ecosystem were linked to autism traits. These scientists used Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) which was tested and proven to improve gastrointestinal and autism symptoms.

The gut has always been under observation in autism study. That’s why a gluten-free and casein-free diet is an alternative treatment. In “Best Food Critic in Town” I mentioned: Marilyn Le Breton, who explains:

“When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.”

2. Stem cells

In “Dog Treats, Ice Cube and Rutgers University for Autism” I mentioned stem cells research, a first-of-its-kind study at Duke University in Durham, North Carolina. The study assessed whether a transfusion of the children’s own umbilical cord blood containing rare stem cells could help treat their autism.
Dr. Joanne Kurtzberg, who heads the Robertson Clinical and Translational Cell Therapy Program, teamed up with Dr. Geraldine Dawson, director of the Duke Center for Autism and Brain Development began a trial over two years ago. During this time 70% of the 25 children, age 2 to 6, were found to have behavioral improvements by their parents and tracked by the Duke researchers. The children traveled to Duke three times over the course of a year. They underwent a series of evaluations such as autism assessments, MRIs and EEGs to track their brain activity. On the first trip, the children received the cord blood infusion along with the intense evaluations. Each child received 1 billion to 2 billion cells, given through an IV in their arms or legs. At six months and then a year later, the children returned for more tests and observations.

Both Dr Kurtzberg and Dr Dawson have personal experiences with autism which shaped them and what they wanted to do in life. They are now in the midst of the definitive trial on whether cord blood can treat autism — a double-blind, placebo-controlled trial involving 165 autistic children, ranging in age from 2 to 8. The FDA has oversight of the study.

At present they are overseeing the definitive trial on whether cord blood can treat autism. This is tested by using a double-blind, placebo-controlled trial involving 165 autistic children, ranging in age from 2 to 8. The FDA has oversight of the study.

The hypothesis of the study is that certain immune cells within the cord blood are crossing the blood-brain barrier and altering brain connectivity while also suppressing inflammation, which may exist with autism.

3. Genes

 Autism Speaks‘ MSSNG Project, has 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. Furthermore, the report talks about ‘copy number variations’ and abnormalities, which are  essentially copy variations found in areas of the genome once considered to be ‘junk DNA’. These areas, full of the copy variations, help to control when and where our genes switch on and off and appear to be crucial to brain development and function.

Genetic sequencing for autism is paramount if we are ever to understand what autism is and  how we can prevent or treat it. Understanding the biological factors that contribute to the condition can lead to better treatments for each individual case, as no two people on the spectrum present the same traits.

4. Mutations

Ten years ago, Michael Wigler and his colleague, Jonathan Sebat, reported that ‘de novo’ mutations (mutations occurring spontaneously) occur more often in people with autism. The mutations they noted were in the form of ‘copy number variants’ (CNVs), deletions or duplications of long stretches of DNA. Data from more than 600 families, they identified CHD8DYRK1ASCN2A as some of the leading ‘autism’ genes.

Right now, 10 years later, researchers pinpointed 65 genes and six CNVs as being key to autism.  “More and more, we are erasing this idea of autism being a stigmatizing psychiatric disorder, and I think this is true for the whole of psychiatry. These are genetic disorders; this is a consequence of biology, which can be understood, and where traction can be made.” says Stephan Sanders, assistant professor of psychiatry at the University of California, San Francisco, who co-led the study.

Conclusions:

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The stigma attached to autism comes from the early link between autism and

schizophrenia. Swiss psychiatrist Paul Eugen Bleuler coined the term ‘autism’ to describe a key feature of schizophrenia. Specifically, Bleuler used ‘autism’ to describe how people with schizophrenia tend to disengage from the outside world. It was not until 1943 that an American child psychologist, Leo Kanner, reclaimed the word for the range of traits we know today as autism. Psychologists Noah Sasson and Amy Pinkham hope to build up a new vocabulary to help disentangle the two conditions in “The social ties between autism and schizophrenia“.

Autism is also commonly misinterpreted as a learning disability. Despite the fact that a good percentage of people on the spectrum may face learning difficulties in addition to an autism diagnosis, or may present the familiar autism symptoms, the two are separate. Intellectual disability, also known as learning disability, is currently defined as a significantly reduced ability to understand new or complex information, to learn new skills and a reduced ability to cope independently. Typically, this is measured by intellectual functioning (commonly referred to as IQ) and adaptive functioning  (day-to-day independent skills), both of which are significantly below that which would be typically expected with difficulties in most, if not all, areas of intellectual functioning and daily living skills.

This is why we need to learn, read and understand autism. Appropriate assessment and formulation can facilitate early intervention and help people on the spectrum get the help they require early on.

Our generation is lucky enough to be living in a time where autism is at the forefront, our stories are being heard and the research is ground-breaking. Stop wasting your time reading about Blac Chyna and the Kardashians and read these reports. Maybe next time you use the word ‘autistic’ you’ll know a more about what it means. Maybe if you learn about autism and teach your children about it, they will be inspired enough to become the ones that solve the puzzle. It may be that you are the one.

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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.

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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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Hope in Poo

(One of) my New Year’s resolutions was to read more non-fiction books. I just finished a book about Pablo Escobar and now I’ve moved on to a nurse’s recollection of what it was like to be a nurse in the 50’s.

Both post-war Colombia and post-war Britain made the current politics scene more real than ever. People had just gone through a wars that left thousands dead, they lived in fear for years and in the end they thought it would never happen again.

IMG_5933And then these guys come along. In times like these it’s easy to give up and it’s easy to overlook hope.

So, I’m going to start a monthly hope write up. This month’s hope can be found in poo. That’s right, our world is so effed up that we can now find hope in poo.

On the 23rd January, a study was published in the Microbiome Journal (here) which claims that Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) alters gut ecosystem and improves gastrointestinal and autism symptoms. The investigation involved 14 days of therapy with oral vancomycin (an antibiotic used to treat a number of bacterial infections) followed by a 12- to 24-hour fast (clear liquids only) with a bowel cleanse using MoviPrep (laxatives). On day 16, to repopulate gut microbiota (the ecological community of commensal, symbiotic and pathogenic microorganisms that literally share our body space), a high initial dose of standardized human gut microbiota (SHGM) was given either orally or rectally for 2 days followed by daily, lower maintenance oral doses of SHGM coupled with a stomach-acid suppressant for 7 to 8 weeks. The stomach-acid suppressant was used to increase survival of SHGM through the stomach. The children were followed for an additional 8 weeks after treatment ended.

What?

Basically:  18 patients aged 7 to 17 years who had ASD and moderate to severe GI problems were given antibiotics for bacterial infection followed by laxatives for 14 days. Then, they were administered a high dose of a range of microorganisms for 2 days. Followed by a lower dose of said microorganisms and stomach-acid repressants for 7-8 weeks; which helps the microorganisms survive longer.

ASD-related symptoms improved, as reported by the Parent Global Impressions-III (PGI-III) assessment, which evaluates 17 ASD-related symptoms, showed significant improvement during treatment and no reversion 8 weeks after treatment ended.

One of the many theories about where autism comes from has been the gut. That’s why we use gluten-free and casein-free diets as an alternative treatment. In “Best Food Critic in Town” I mentioned: Marilyn Le Breton, who explains:

“When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.”

What this study proves, on a small scale, is that perhaps cleaning the gut of neurodiverse people from the bacteria that the body does not keep in neurotypical people could be the one of the answers we have been looking for.

Hope.

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Silent Achievements

You may be familiar with famous autistic adults but it is important to remember that autism lives in the people around you, they lead their lives in comfortable obscurity.

Consider these people:

One child with autism touches the lives of countless others. He brings out the best in many of the people he meets throughout his life. He can be a source of inspiration for those around him as he leads a happy, healthy life in the process. This is the greatest measure of success.

World Autism Awareness Day is a group on facebook where every day people post their children’s success. Take a minute.

Create! for Autism is my favourite group. It aims to change the way people think about creativity. The Create! Art for Autism is a national art competition and art exhibition for young people aged 11-25 years old with an Autistic Spectrum Condition. Create! Art for Autism 2014 entries are looking very promising and the event is celebrating its fourth year of success.  Young people with an ASC are invited to enter the five main categories: 2D Art, 3D Art, Digital Photography, Digital Animation and Poetry.

Some of the 2013 winning entries were: (more)

WINNER – POETRY:

Radio Presenters
Danny Quinn – Age 15
Sperrin Integrated College

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WINNER – 2D CATEGORY:

Visage, Pica
Alexander Fox-Robinson – Age 16
Pembroke School

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WINNER – DIGITAL PHOTOGRAPHY:
Fading Words
Dangloush Brooks – Age 15
The Abbey School

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Some of this years entries are: (more)

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Take a moment to admire these pieces; these artists. Because when you look at art, you don’t see Autism, you see the soul of the artist; and their soul is just like yours.

Educate yourself, don’t look at Autism and “Aww”. Look at Autism and be inspired.