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21 and Atypical: Food, Glorious Food!

IMG_5234“He stares as we bring over the food, picks up the plate, smells it and then if we’re lucky takes a tiny bite; and by tiny I mean that ants would probably carry a bigger bit than the amount he is willing to try. Then comes the silence – we hold our breath, fists clenching, heart racing all waiting to see if he approves of the dish.”  Christos has been eating the same 5 things for most of his life; pasta & tomato sauce, curry & rice, egg & lemon soup, chicken nuggets, toast. When Christos switched to the GFCF diet my dad – chef extraordinaire – jumped to action and created recipes which incorporated all the things Christos wouldn’t try but which were nutritionally essential to his diet. Read more about Christos eating habits on Best food critic in town!

Stephanos was always very choosy with food as well. In 21 and Atypical: Stephanos we described how he went from eating fruity, colourful and varied foods to being reluctant and sceptical of them! He stopped trying new foods around the age of 1. Instead, Stephanos switched to pale coloured foods with a mild palette; for example, Cerelac, plain biscuits, bananas. Fruits with textures or colours stopped appealing to his appetite. Once he was diagnosed he switched over the the GFCF diet.

The GFCF elimination diet requires that all foods containing gluten and casein are removed from the child’s daily food intake. Gluten can be found in wheat, oats, rye, barley, durum, bread, pasta, cereal, cookies, soups, sauces, candy etc. Casein can be found in dairy products in general; milk, butter, cheese, ice cream etc. 

Marilyn Le Breton, author of ‘Diet Intervention and Autism’ explains why the GFCF diet may be the key to unlocking autism: “When you eat, the food you consume is broken down in your stomach… 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.” In 2018 the Microbiome Journal (here) published a study 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. – More on this in Hope in Poo .

For both the boys switching to this diet – in Cyprus 20 years ago – was incredibly difficult. Our family used to order and ship maize pasta from Italy, order specialist flour and bread to be baked at bakeries, pack a whole suitcase of suitable products to take on a month long holiday. My parents fought endlessly to convince him to eat these new products and, to some extent, it made a difference! He was less agitated, less tired and more responsive without gluten and cassein. Funnily enough, this year I have had to go on the same diet for health reasons. But now, everyone is falling over themselves to accommodate my dietary requirements. Now, we find it weird if we can’t find gluten-free products anywhere.

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I think back to cooking maize pasta and carrying it around in tupperware with grated halloumi in tin foil to take to restaurants or visits, the smell of egg and lemon soup in our room in the Maldives over a bunsen burner, all the packets of crisps my parents had to ration between the two of us to last him through the holiday. I think back and wonder how did we survive in a world that didn’t understand why we couldn’t just have ‘normal’ pasta? The answer is: parents. Their endless, relentless and ferocious attitude, resilience and unstoppable drive.

Today, Stephanos eats strawberries, salad vegetables and all kinds of colourful and flavoursome fruits. In fact,m the first time he tried a red strawberry he was 8 years old. Hi diet is varied and he doesn’t struggle to try new kinds of food at school or restaurants or even at home. Christos eats fish, meat, sauces and has no issue trying buffet options or airplane food.

The boys love food. In fact, they plan their day around it (just like you and me). Their body just digests food differently to some people. Following the GFCF diet as a neurotypical adult I have noticed so many advantages in my body, mood, mental health and my every day life. I don’t feel fatigued, bloated, grumpy, my skin is glowing, my hair is growing, my mind is alert and keen. Maybe the advantages of the GFCF diet are just a glimpse in the many, many things we all have in common.

#21andAtypical – but atypical according to whom?

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Mr Moustache

Christos just had his first shave.

I begged my mum to do it while I was there, she didn’t want to admit he was growing up; neither did my dad. So for the 2 weeks I was there I spent my days with a little (not so much), moustached gentleman.

It’s scary how quick they grow up.
Cherish every moment, every word, every tantrum, every little thing you’ve had to do a million times over. Love your kid, cos one day you’re gonna wake up and they’re gonna grow up and it’s going to make you cry.

Mr Clean Face

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15 answers about Autism

19 days left of Autism Awareness. On Monday I’m flying back home, so I’ll focus on his day-to-day activities. For now and for the two days I missed, I want to write straight answers to straight questions and see if I can make it to 100? Here goes:

1) What is the Autism Spectrum? The autism spectrum or autistic spectrum encompasses a range of conditions classified as neurodevelopmental disorders. It is best described as a collection of developmental disorders that affect the brain. Autism occurs in all racial, ethnic & social groups. I think it’s best – rather than categorising these diagnoses – to refer to diagnosed disorders that fall underneath the autism spectrum umbrella. Individuals with ASDs are best represented as a single diagnostic category because they demonstrate similar types of symptoms and are better differentiated by dimensions of severity.

a) Autism: Is often seen as the core of ASD

b) Pervasive developmental disorder – not otherwise specified (PDD-NOS): A diagnosis made when symptoms of both Autism and Asperger’s is present.

c) Asperger’s Syndrome: A milder form of ASD

d) Rett Syndrome: Rare and severe neurological disorder which affects more females than males

e) Childhood disintegrative disorder (CDD): Rare and sever developmental disorder

2) What’s the prognosis? Its life-long. It upsets me when I hear people insist that Autism is a disease that can be cured. No. It can’t. It can get better with the hard work of the family and the child but there’s no magic potion or injection to cure it. The most important prognostic factor is their IQ. However, if you want to know how far they can develop I would suggest monitoring their progression in the first year after they get diagnosed. Early diagnosis, early treatment, no-stop attitude can improve disability, speech impairments and social interaction.Corny as it may sound, the best treatment for Autism are love, patience and persistence.

3) Other disorders with the same symptoms? When a paediatrician is treating a child because it hasn’t spoken yet, they must consider different diagnoses – anything associated to language delay. This list can include: hearing loss, mental retardation (down syndrome, Fragile X syndrome), epilepsy related disorders, childhood schizophrenia, tuberous sclerosis (benign tumour growth in organs), Williams syndrome (genetic condition that causes developmental delays but no social impediments). This is why you need to diagnose them as soon as possible. Get second, third, fourth opinions; a solid diagnosis is the first step.

4) What symptoms should parents look for? No two people with Autism have the same symptoms; various combinations each ranging from mild to severe. Look for: resisting physical attention, unresponsive to commotion, no eye contact, uninterested in other children, echolalia (involuntary and meaningless repetition of sounds/words), other forms of repeated behaviour (playing with same toy for days, watching same video/listening to same music), body rocking, hand flapping, different postures (toe walking).

5) How is Autism Diagnosed? Since there is no blood test to facilitate diagnosis, doctors resort to behaviour based diagnoses. So, observing their communication, behaviour and developmental levels. The second stage is observation by a paediatrician, a neurologist and speech, physical and occupational therapists. What is often referred to as screening is a procedure where there has been a thorough examination of the child’s and parents medical history, physical examination, and testing for any of the mimic disorders mentioned above.  So, numerous doctors poking around him evaluating his reactions, social skills and communication capabilities. So, multiple sets of brain scans, lead screening, audiograms, tympanograms, multiple sets of brain scans, EEG testing. I think the worst thing about the diagnosing process is the process of elimination.

Remove the fear of the Autism label. The more time you spend fearing Autism the more it will consume your child. You don’t want to live a life where you regret not getting a diagnosis as early as possible.

6) What do studies say about the link between Autism and vaccinations? This whole school of thought started when data was misrepresented and allegedly showed that the Measles, Mumps and Rubella vaccine had a direct link to the increase in Autism cases. Read more

7) What can parents do about their children’s immunisations? One word – Research. Familiarise yourselves with the information available on vaccinations. Don’t rely on isolated reports about vaccines and supposed health consequences. Don’t delay vaccines to your autistic child or younger siblings until more studies are performed. In 2000 – 2002 in the UK, Germany there were measle outbreaks following parents refusal to vaccinate their children.

8) What can mercury exposure cause? Obviously mercury exposure is dangerous for anyone and can resilt to neurologic illness. A preservative called thimerosal is used in vaccinations. This has led to a concept that mercury can cause autism. Mercury exposure occurs in our day-to-day environment (burning of waste, fossil fuel). Tiny amounts of mercury, like the ones found in vaccines are found in the air, the water and food; therefore there is no direct link between mercury and autism. Read More

9) What are the therapies available? Applied Behaviour Analysis, Treatment and Education of Autistic and Related Communication Handicapped Children, Speech & Language therapy, Picture Exchange Communication System, Makaton (communication programme that involves using signs and symbols in support of spoken language), Psychological therapy.

 More details

10) Tips on early communication? Use your child’s name so they know you are addressing them – if you use it often enough, or get their attention when you say it, they’ll start responding to it. Keep language simple – using single words, speaking slowly and clearly with pauses between words. Accompany everything with simple gestures. Allow extra time for your child to process what you have said. 

11) Which ones are the most useful? We used language therapy, TEACH, PECS, Makaton… You know what? We used all of the above. It depends on which one works best for your kid.

12) What about unproven treatments? 

Special diets – Done it, https://christos90.wordpress.com/2013/08/07/best-food-critic-in-town/ .

Neurofeedback – Done it. where brain activity is monitored (usually with electrodes placed on the head).

Auditory integration training – Done it. a therapy that involves listening to music that varies in tone, pitch and volume.

Omega 3 – Done it.

Hyperbaric oxygen therapy – Done it. treatment with oxygen in a pressurised chamber. 

Facilitated communication – Done it. where a therapist or other person supports and guides a person’s hand or arm while using a device such as a computer keyboard or mouse

13) Are medications necessary? Depends on the child. Some autistic children suffer from epilepsy, ADHD etc. Unless they need it, I would strongly suggest NOT using medication to monitor their behaviour. It breaks your heart. Just take each day as it comes.

14) What types of medication would be used? Vitamins (Vitamin C, Iron etc), natural supplements, Omega 3.

15) Will these make a difference? YES. It might be small, it may take months of tantrums, yelling and constant pressure but it’s worth it.

Start early, educate yourself. Get them diagnosed.