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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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Preach & Teach

A voice mail message has come to light where school staff, in Matravers School in Westbury, asked a mother to keep her autistic son at home during an Ofsted inspection. The school suggested that her son took an “authorised” absence.

This happens in schools every day, this isn’t just about Autism, or Downs, or dyslexia, or anything specific – it’s about children being targeted and scarred – not just by children but by members of staff as well. How can we expect an inclusive society, an educated, compassionate world if we preach without teaching?

Another parent, said his 15-year-old son, who has dyslexia, was told by a teacher that his lessons would be swapped during the inspection “because they didn’t want any disruption in classes”.

A couple of months ago a teacher said “I was told to ignore a child’s autism to keep fees coming in”.

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Two severely autistic boys’ parents threatened legal action against a school, claiming they were shut in a room for hours each day. The boys, aged 12 and 14 were pupils at Abbey Hill School in Stoke-on-Trent. They were kept in a cupboard-sized calm room; the room in the picture. The door was not locked, yet it was closed and there was no handle on the inside. We’ve talked about sensory overload or deprivation and there are certain environments that facilitate this and the use of seclusion and ‘calm rooms’ are recognised. They are positive tools to use to assist autistic children, but how does a cupboard with two sleeping bags constitute a calm room? A room with no escape? Or just a room to shove people in when you can’t be bothered to deal with them? Incident reports detail how the boys charged at the door and tried kicking the door handle until it broke. Incident reports about a child trying to get out of a room, which is supposedly designed for their benefit. The log shows him spending the majority of his school day in the room.

A Kansas community is was recently grieving the loss of a 16-year-old autistic boy. Maxwell Webb took his own life. He didn’t leave a note; he was bullied. His father said the mistreatment wasn’t addressed by the school’s administration and was the major factor out of several that led to Maxwell’s death.

An Ohio family says that their 15-year-old boy with learning disabilities was bullied and misled into stripping off and subsequently getting covered in feces and urine. The teen thought he was participating in the ALS Ice Bucket Challenge by his peers.

Listen. Learn. Grow. Accept.

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Christos’ Love

You know how they say children with Autism hate to be touched?
Not true. Some may be overly sensitive to touch, sound, smell. They don’t lack emotion.
Christos hugs, laughs, kisses, cuddles, teases.
Don’t stigmatise the spectrum with stereotyping.

Educate yourselves about Autism.

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The [A] Word: [I]gnorance

Josh, pulled out of Acton swimming baths in London placed face-down by seven officers who restrained him, shackled and handcuffed him.

Andrew Young, killed by Lewis Gill with a single punch in Bournemouth.

Faruk Ali, beaten by two police officers while helping men collect rubbish because he looked suspicious.

Man charged with beating an autistic boy, 16, at a Florida house party.

I can name each and every situation I’ve been in where I could tell that people were afraid of my brother.

Just recently, in August, I took him to our local bakery to get him crisps and iced tea. He got so excited, he stormed in gave me what he wanted and waited for me to get my stuff and pay. He ran up and down, shook his arms, shook his head and made ‘noises’, people stared but we didn’t even notice. Then, as we were waiting in line, I asked him to stand by me and he did; he still shook his head and hands, jumped up and down a bit, gave me hugs and kisses. The cashier then thought she would share that she “..was frightened that he would hurt someone in the shop“. I’m not sure what possessed her to tell me this, maybe she had a death wish; either way it made me want to hit her. Even after all these years, all the insane, unsubstantiated assumptions we’ve heard, my first instinct was to jump over the counter and hurt her; it never goes away. It breaks my heart that people look at him, my gentle, smiling, beautiful brother thinking that he is dangerous. I didn’t respond with “I’m sorry, he’s autistic”, I just explained that he was excited because it was crisps and iced tea day. She went on to speak to him softly and ask him about how his day was, which he completely ignored, but she tried and when we went in there again she remembered his name. It made me think, made me realise that it wasn’t an attack it was a ,misunderstandingautism-children-1-68-001, an ignorant comment made in passing with no harm or insult intended. But when you’ve had people yelling at your brother on the plane to quiet down, throwing him out of supermarkets because he was rearranging chocolates, grabbing children and dragging them away from him, pinching him or touching him just to agitate him and then refuse it and blame it on Autism, when you have teachers threatening to call the police on him – that is your go-to reaction.

When I read stories like the above, I feel the fury of Faruk Ali’s family; I feel the devastation of Andrew’s mother; I feel the paralysing helplessness that Josh’s dad felt; I feel the fear the 16-year old boy felt when he was being dragged across the floor by his hair. I feel it because we have all, at one point or another, been in a situation where our children were victims of ignorant behaviour.

“Control your child”, “What is he doing?”, “Can you stop screaming?”, “Make him stop”, “Is he dangerous?”, “What’s wrong with him?” the list goes on.

Helping with rubbish collection was something he did every Thursday, it was his routine. It probably soothed him in a way, to get rid of rubbish for whatever reason be it cleanliness or to get the off the pavement; it made him happy.  His weekly routine was disrupted by two police officers who decided he seemed suspicious.

Josh, was pinned down, handcuffed and terrified by police in 2008 for “refusing” to leave a swimming pool; he became transfixed with the water, he didn’t want to go. Instead of getting his carers to help the police decided violence was the way to go. Even if he wasn’t on the spectrum, is that the way you want your officers to react to children? His treatment was found inhuman and degrading; “But when they brought him home, he ran upstairs and crouched in a corner, sobbing uncontrollably. He wouldn’t sleep for nights. As a parent, that tears you apart“. It tears me apart, I gasp for air just reading it. It haunts me that this might happen to my brother who loves swimming too, and like a lot of children on the spectrum, he sometimes gets stuck in places, in the movement of the water, the sound of a machine, the feeling of something and has trouble moving on. It gives me nightmares that I might not be there to stand up for him; that even if I am, I probably won’t get to him in time; I probably won’t have the words to explain myself – I’ll just attack.

We are very much aware of the level of fear and ignorance of which the general public is capable of. But we fight so hard, and our kids do too, that when we encounter it, it can turn into a violent defence. Behaving “oddly” or “weirdly” can turn a look into a stare, finger-pointing to an attack and whispering into conspiracy, it can turn a comment into an assault – that’s terrifying for us.

Andrew Young’s mother is someone I thought about for weeks. He had Asperger’s syndrome and was killed by a single punch after pointing out to someone that they shouldn’t cycle on the pavement because it was dangerous. Andrew died because he thought it was important to follow rules; he died because his killer thought he was menacing; he died because we live in a society that encourages violence and ignorance, a society that nurtures subconscious insecurities and a false sense of entitlement and makes our nightmares came true. He was sentenced to 4 1/2 years in prison; message sent?

You think its stating the obvious when we say autistic people behave differently.

We need to say it;

We need to repeat ourselves over and over again because we need it to reach as many people as possible;

We need to make people aware that Autism isn’t a disease;

We need people to learn about it because we don’t have a cure yet;

We need people to understand more about it because you will come across someone on the spectrum sooner or later and it might be our son, our daughter, our brother.

I could keep listing cases. But I think we need to focus on police training, academic training for identifying someone with a disability, or a mental illness; this isn’t a problem just for people with Autism. Authorities need to be sensitive and educated enough to deal with disabled people on a day to day basis. Schools need to educate the society of tomorrow about acceptance; is it that absurd?

Shine light on discrimination against the disabled, institutional racism and the victim-blaming of sexual assaults; not just by police, but by civilians as well. What brighter light to shine than that of education?

We need you.

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Blue month

Autism awareness month is upon us.

I haven’t written in months because I’ve been trying to start my Legal Practice Course in September found out on Monday that I could, which reminded me of the reason I’ve been trying to get this done for the last couple of years. – Chris. I’ve been so wrapped up in trying to follow through with my plans that I lost track of why I was so keen on making them work.

I’ll start off this month with something more general; so what is autism? I found this “easy read” on autism.org.uk by the National Autistic Society.

Fact 1: There are many people with autism in England, Scotland, Wales and Northern Ireland. More than 1 out of every 100 people has autism – No. 1 in 58 people are on the spectrum in the UK. 1 in 68 children and 1 in 42 boys in the US. A 2012 review of global prevalence estimates of autism spectrum disorders found a median of 62 cases per 10,000 people.(Elsabbagh M, Divan G, Yun-Joo Koh YJ et al.. Global prevalence of autism and other pervasive developmental disorders. Autism Res. 2012;5(3):160–79.)

Fact 2: Autism lasts for all of a person’s life. But they can still do a lot of things and learn a lot of skills. Yes. There is no identifiable cause for autism, or a ‘cure’. There is no magic potion, but there is hard work, mountains of patience, love, understanding, education and treatments available that will make a difference. No one understands the significance of a minor behavioural change or reaction like people that live with autism do. There’s speech and language therapy, oxygen therapy, social skills therapy, occupational therapy, specialised diets, classes, case studies, applied behaviour analysis and structured teaching just to name a few. The first time they communicate, the first time they accept a small change, the first time they try something new makes all of this hard work worth it. But most of all, is having a strong support system, a group of people or an individual that is dedicated to them, their well-being and progress. Chris went from throwing tantrum in the supermarket and throwing himself on the floor to a young teen who we can have a conversation with about what he wants, what we want and compromise; most of the time.

Fact 4: They find it difficult to tell people what they need, and how they feel. Yes, but there are many different ways to tackle this. With Chris, we started communicating with him through pictures at first. So, we had a picture of every single thing in our house. He wanted water? Picture. He wanted an apple? Picture. He wanted to play on the computer? Picture. He wanted a specific person? Picture. We had pictures of different facial expressions and feelings which he would use to express himself. Then when he was learning words, we attached words to the pictures until we got to the point where we didn’t need pictures. Chris’ case is not always the case though. There are people on the spectrum that have little or no communication with their surroundings; pictures would still make life a bit easier. It’s work, time and effort but it’s worth it. The trouble with the spectrum is the fact that it is a spectrum. You cannot formulate a universal treatment for them. You cant even teach them in the same way; because every single of them is different.

Fact 5: They find it difficult to meet other people and to make new friends. No. Not because it cant be true, but because the statement generalises them and makes this sound like an autistic trait. I’ve met people on the spectrum that won’t even acknowledge you’re there, and people that will not leave your side as well as everything in between. The same goes for “They find it difficult to understand what other people think, and how they feel.” 

Fact 6: Autism is a hidden disability – you can’t always tell if someone has it. Yes. Because the spectrum is so wide and diverse, people can go through life having autism and not realising. When you’ve lived with it, and read everything you could get your hands on about it, it becomes easier to identify. It can be genetic, but not manifest itself in older generations unless you look for it. This also proves that people can live with autism, can work, can marry, can have children, be grandparents and lead a life without special support. Its in hidden signs that you get a peak of autism; like their annoyance when their schedule is changed, being adamant on using a specific brand or route and many more. I often hear people use the phrase “He’s so autistic about that”; they might be. Being autistic is linked to so many myths and misconceptions that the average person will think of a child throwing tantrums, not speaking or making “irregular” hand movements when thinking of autism. No; autism isn’t easy to diagnose or recognise.

Fact 7: Children with autism have been bullied at school. Yes. Why? Because of the wrong information being distributed to the public. Because we hear autistic and think Rain Man. Because we hear Aspergers and think Boston Legal. The saddest thing about this is that children with autism will be bullied by family members as well if they attend the same school. Peer pressure and lack of understanding is literally making their lives difficult. It traumatises them, could make them aggressive or make them seclude themselves.

My experience with the education system and bullying will need a post of its own.

So, in aid of raising awareness for autism this month keep in mind that: that kid on the plane won’t stop crying despite its parents every effort; that teen in the supermarket that stacks shelves so neatly; that adult that skips and hops on the street; they could all be on the spectrum, don’t judge, understand.

Educate yourselves about Autism.