Category Archives: Uncategorized

Iris House

IRIS HOUSE Children’s Hospice

“We provide holistic, loving, professional, free community and Hospice based respite, overnight and end of life care for special needs children with life-threatening illness and or life-limiting conditions in the Western Cape. We also provide holistic support for their families.  We train our care team to a high standard and continually strive to train parents on ways to improve their child’s quality of life.  We promote the concept that every life is a gift and valuable no matter how short that life maybe.”

Visit Iris House and support a good cause.

Listen to some stories of the parents and staff of Iris House, click here.




What is it and why do people do it?

This video says it all. Enough said.

Embrace Autistic Stimming | North Wales Autism Conference

This was my speech, "Embrace the Autistic Stim," at the 3rd Annual North Wales Autism Conference. It was such an honour and privilege to be invited to talk about autistic stimming, and the importance of self-regulation and freedom of movement.Sensory Warning: we recommend you listen to this on your speakers NOT headphones if you are auditory sensitive (like me)…the background noise is tinny and makes my teeth vibrate Huge thanks to Willow Caroline Holloway, Angie Atherton and Axia ASD for putting together such an amazing day.If you enjoyed this speech, please consider becoming an Agony Autie Donator by pledging on Patreon or making a contribution to our start up fund :

Posted by Agony Autie on Sunday, 21 October 2018



Levels of Autism

Levels of Autism

I have seen this statement a lot on some of the support pages I follow and heard the questions asked amongst parents:

“What level of Autism is your child?”

I almost want to say level 40, but I think it would just cause more confusion.

According to the article in the link below, there are three levels. The level of your child dependant on the amount of support your child needs with day-to-day tasks.

What are the three levels of autism?

There are also other labels like High or Low functioning – again, how much help does your child need with everyday tasks.

My advice: Focus on the strengths of your child and support the places where help is needed.

Organic Acid Test: Part 3, Oxalate Metabolites

Please note: The content of this post is my own unless the technical terms are too hard to explain, then the content is copy and paste. I am not a medical professional and thus the post is my point of view. But the content is science-based and credible. Just because it is a new science, does not necessarily make it quackery.

Oxalate Metabolites


Oxalic acid is one of the most acidic organic acids in bodily fluids. This organic acid is derived primarily from fungus (Aspergillus and Penicillium), Candida, or your metabolism. Excessive consumption of high oxalate foods and deficiencies in vitamin B6 can contribute to elevations in oxalic acid.

Many of the foods very high in oxalates are healthy foods. High oxalate foods include spinach, beets, chocolate, peanuts, wheat bran, tea, berries, and nuts (cashews, pecans, and almonds).

Testing oxalate levels are important because high oxalates can be very dangerous. Oxalate crystals have a sharp physical structure that can cause oxidative damage, increase inflammation, cause pain, and damage tissues.

Oxalate crystals may form in joints, blood vessels, muscles, kidneys, lungs, heart, thyroid, eyes, and even the brain. High oxalic acid can hinder the proper function of vital bodily functions, poison the mitochondria, and contribute to kidney stones.

High oxalates in the GI tract may significantly reduce the absorption of essential minerals such as calcium, magnesium, zinc, and more. Oxalates may form in the bones, crowding out bone marrow cells. This can lead to anaemia and immunosuppression. Identifying elevated oxalate metabolites is significant for people with chronic pain, joint issues, kidney stones, and other health issues.

MTHFR part 16: Homocysteine part 4

Please note: The content of this post is my own, unless the technical terms is too hard to explain, then the content is copy and pasted. I am not a medical professional and thus the post is my point of view. But the content is science-based and credible. Just because it is a new science, does not necessarily make it quackery. Always consult your doctor first before trying a new treatment.

Do you want to see which genes are involved in influencing Homocysteine? 

MTHFR C677T is the culprit. And if it is homozygous it is the worst.

We all have 2 MTHFR genes, one inherited from each parent. Some people have a genetic mutation in one or both of their MTHFR genes. People with mutations in one MTHFR gene are called “heterozygous” for the MTHFR mutation; if mutations are present in both genes, the person is said to be “homozygous” for the mutation.

The most common MTHFR mutation is called the MTHFR C677T mutation, or the “thermolabile” MTHFR mutation. Another common mutation is called MTHFR A1298C. To have any detrimental effect, mutations must be present in both copies of a person’s MTHFR genes. Having only one mutation, ie, being heterozygous, is, from a medical perspective, irrelevant. Even when 2 MTHFR mutations are present (eg, 2 C677T mutations, or one C677T mutation and one A1298C mutation), not all people will develop high homocysteine levels. Although these mutations do impair the regulation of homocysteine, adequate folate levels essentially “cancel out” this defect.

In an paper published by Dr Joseph Pizzorno, ND, Editor in Chief called “Homocysteine: Friend or Foe“, he list the following:

Genes Directly and Indirectly Involved in Homocysteine Metabolism

Symbol Gene Name Function
MTHFR Methylenetetrahydrofolate reductase Conversion of 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate
CBS Cystathionine-β-synthase Condensation of homocysteine and serine to form cystathionine
MTR Methyltetrahydrofolatehomocysteine methyltransferase Remethylation of homocysteine to methionine
MTRR Methionine synthase reductase Reductive regeneration of cob(I)alamin cofactor required for the maintenance of MTR in a functional state
RFC1 Reduced-folate carrier 5-methyltetrahydrofolate internalization in cell
GCP2/FOLH1 Glutamate carboxypeptidase II Polyglutamate converted to monoglutamate folate by action of the enzyme folylpoly-γ-glutamate-carboxypeptidase (FGCPI), an enzyme expressed by GCP2
ENOS Endothelial nitric oxide synthase Conversion of l-arginine to l-citrulline and nitric oxide synthase (NO)
TC2 Transcobalamine II Transport of vitamin B12
SHMT1 Serine hydroxymethyltransferase I Reversible conversion of serine and tetrahydrofolate to glycine and 5,10-methylenetetrahydrofolate
TYMS Thymidylate synthase 5,10-methylenetetrahydrofolate and deoxyuridylate to form dihydrofolate and thymidylate
CTH Cystathionine-γ-lyase Hydrolysis of cystathionine to cysteine and α-ketoglutarate
MTHFD Methylenetetrahydrofolate dehydrogenase Conversion of 5,10-methylenetetrahydrofolate to 5,10-methenyltetrahydrofolate
MTHFS Methenyltetrahydrofolate synthetase Conversion of 5-formyltetrahydrofolate to 5,10-methenyltetrahydrofolate
APOE Apolipoproteine E Mediates the binding, internalization, and catabolism of lipoprotein particles
VEGF Vascular endothelial growth factor Growth factor active in angiogenesis, vasculogenesis and endothelial cell growth
PON1 Paraoxonase I Hydrolyzes the toxic organophosphorus. It also mediates an enzymatic protection of LDL against oxidative modification
BHMT Betaine-homocysteine methyltransferase In liver and kidney, it catalyses the conversion of betaine to dimethylglycine (DMG)
MAT1A Methionine adenosyltransferase IA Methionine to SAM by transfer of the adenosyl-moiety of ATP to the sulfur atom of methionine
AHCY S-adenosy-l-homocysteine hydrolase Hydrolysis of S-adenosy-l-homocysteine to adenosine and homocysteine
CBL Cystathionine-β-lyase Conversion of cystathionine to homocysteine
F5 Coagulation factor V Cofactor for the factor Xa-catalyzed activation of prothrombin to the clotting enzyme thrombin
PAI1 Prothrombin activator inhibitor I Inhibition of fibrinolysis by inhibiting the plasminogenactivator and t-PA

We are complex beings, with complex systems.

Alex is currently taking Methyl Care from Metagenic:

Ingredients Amount Per Serving % Daily Value
Serving Size 2 Capsules
Servings Per Container 60
Riboflavin 1.6 mg 94%
Vitamin B6 (as pyridoxine HCl) 25 mg 1,250%
Folate (as calcium L-5-methyltetrahydrofolate) 800 mcg 200%
Vitamin B12 (as methylcobalamin) 1,000 mcg 16,667%
Zinc (as zinc citrate) 1.5 mg 10%
Manganese (as manganese citrate) 0.4 mg 20%
Molybdenum (as molybdenum glycinate) 15 mcg 20%
N-Acetyl-L-Cysteine 600 mg *
Betaine HCl 500 mg *

††As Metafolin®. Metafolin® is a registered trademark of Merck KGaA, Darmstadt Germany.

We need to do a homocysteine soon to see if any progress has been made in supporting his methylation cycle.

For now, this is the end of our MTHFR research, even though there is so much more.

Some of the resources used during my research:


Follow on a previous post about picky eaters

This question was asked on an Autism Facebook group:

Q: Anyone else have issues with getting their kids to try new foods?
My son has such a limited range of foods that he will eat. We have been trying for two years to get him interested in veggies, meat, rice and pasta other than 2-minute-noodles. We have tried everything they say you must do: “smell, and one bite”, bite and spit out, try a food for 20 days, stop for 20 days then try again, eating together, eating together at a table, eating without the TV, eating while watching his favourite program, and even have his teacher at the day care try. We have involved him inbthe cooking process to, he will make the food but not eat it.Nothing has worked. He eat mixed textures, so it is not textures. There is no medical issue, he does not gag when he eats. Supper takes almost 2 hours to complete, sometimes we just give up. Sometimes he will eat, play and come back to his food. But dispute being on a limited diet and just above the underweight line he is healthy. But he has very little fat around his important organs, which is not good should he ever get injured.
Any suggestions?

A:  If you’ll allow me, I’d like to help you understand your son’s food aversions better, as an autistic adult who has major sensory issues, because I know that it’s probably incredibly difficult for you to comprehend how things that seem utterly benign to you can be SO PROBLEMATIC for him.

The best analogy I can give you with food is the one I gave the dental hygienist a few months ago when he wanted me to rinse with a blue anti-bacterial solution and I said no. He insisted, and assured me that it didn’t taste bad, and I refused again and explained about my sensory issues. “But it’s just for a moment and then you spit it out,” he said. And that’s when I started to cry.

Because you see, when I looked at that solution, my BRAIN said, “That is NOT FOR HUMAN CONSUMPTION.” I apologize for this extreme wording, but . . . the hygienist might as well have been asking me to sip on a cup of urine. And that is how your son feels when he looks at foods that he cannot eat. His BRAIN is telling him, “Those things are NOT FOR EATING.” They might as well be . . . well, poop. And so it doesn’t matter if Mum and Dad say, “But they’re lovely, and they taste nice, and they are completely healthy and good for you.” Because, not to put too fine a point on it, but . . . if you looked at what was CLEARLY a poop sandwich and someone told you it was lovely and healthy, would that make YOU want to eat it any more than you already did? Probably not. Your brain would STILL be telling you: “NOT FOR EATING!!” with big flashing lights, no matter what they said.

And this is what parents need to understand about autistic kids with sensory issues around food. They are NOT “picky eaters”. They have brains that are showing them something COMPLETELY DIFFERENT from what you are seeing, and it is actually cruel to force them to eat these foods if they’re telling you that they can’t. And yes, we are painfully aware that this can lead to nutritional deficits and gastrointestinal problems–most of us have had both at some point or another throughout our lives. Which is why it is a struggle, and it DEFINITELY is a good idea to talk to your kids about what flavours and textures they DO like (crunchy? soft? bland? tart? sweet?) and try to work within those to introduce what variety you can, and talk to their paediatrician to make sure they’re getting a multivitamin and possibly others to supplement if necessary. It’s awful and definitely NOT the ideal . . . but neither is traumatizing them over food, because the OTHER really common thing in autistic adults is lifelong eating disorders over having been made to eat things we couldn’t cope with.

 Q: I just need to understand, and I am sorry if thing sound blunt or disrespectful, how do you go from eating everything to “I cannot eat this”. When you have had a previous experience with the food item, you know how it tastes and smells and feels and you liked it – all of a sudden it is like you have never eaten it before and not going to try it. What causes that switch?

A: It’s an excellent question! I wish I had a better answer, but I’m guessing that it has to do with the neurological aspect of autism, and the fact that these things are literally “chemical” and filtered through our brain’s synapses–as opposed to being “psychological” like a behaviour.

To be more clear: I think what you’re looking at is the rare, but not completely inexplicable opposite of when a persons brain learns to “get used to something new”; which is that some weird chemical or synaptic switch has flipped in their brain that is suddenly telling them that this smells bad or tastes funny when it didn’t previously . . . but it IS an actual SENSORY PERCEPTION rather than just a behavioural decision.

Again, an example of this happening is that I started a new medication a while ago for my migraines, and it actually affects the chemical makeup of my blood in a manner similar to chemotherapy. My doctor didn’t warn me about this, but suddenly all kinds of foods started to taste bad!! I thought there was something wrong with my tastebuds! Things that I loved–chocolate, Coke, ice cream–suddenly tasted weird and terrible! It turned out that it wasn’t my tastebuds, it was literally a side effect of the medicine and my blood chemistry!! It has totally changed the way I eat (and I still don’t like Coke anymore, LOL).

In your son’s case, I’m assuming he’s not on any new meds, but over time sometimes things just change. Just like you learn to like different foods as you grow up, unfortunately, he may come to dislike some as well–a smell may start to seem unpleasant to him, or a texture, for no real reason except that his body is changing and growing and his brain is doing the same. Sometimes this can work in your favour (I had a sweet tooth as a young child, but by the time I was 5 would have a meltdown if someone even ate a hard candy near me, I was so sensitive to the smell of artificial flavours).

The good news is that he may also start to be interested in other foods as he gets older–it just takes time and patience, and I would for sure let him lead the way, and just make stuff available to him and talk about what YOU like and are eating.

Here’s to the New Year!

On the eve of the new school year, we are excited about what tomorrow will bring…

… to what the rest of the year will bring, and that it would be a good year.

We ended 2017 by saying goodbye to Alex’s teacher, Sindy Furley, as Broad Horizons Academy closed its doors one last time. Alex does not realize it yet, he does not comprehend what has happened yet, but I hope that he will soon learn to realize emotions like loss and sadness. But he has grown a lot, in many ways.

So what is happening tomorrow?

Tomorrow is a new school with new friends and old friends.

Very excited for the new opportunities for Alex to experience.

And then later this year he might even get to go to Big School.

OT visits – What is that for?

Occupational Therapy

What is the purpose of Occupational Therapy, especially for children?

“Occupational therapy (OT) treatment focuses on helping people with a physical, sensory, or cognitive disability be as independent as possible in all areas of their lives. OT can help kids with various needs improve their cognitive, physical, sensory, and motor skills and enhance their self-esteem and sense of accomplishment.”

Kids Who Might Need Occupational Therapy

According to the AOTA, kids with these medical problems might benefit from OT:

  • birth injuries or birth defects
  • sensory processing disorders
  • traumatic injuries (brain or spinal cord)
  • learning problems
  • autism/pervasive developmental disorders
  • juvenile rheumatoid arthritis
  • mental health or behavioral problems
  • broken bones or other orthopedic injuries
  • developmental delays
  • post-surgical conditions
  • burns
  • spina bifida
  • traumatic amputations
  • cancer
  • severe hand injuries
  • multiple sclerosis, cerebral palsy, and other chronic illnesses

Occupational therapists might:

  • help kids work on fine motor skills so they can grasp and release toys and develop good handwriting skills
  • address hand–eye coordination to improve kids’ play and school skills (hitting a target, batting a ball, copying from a blackboard, etc.)
  • help kids with severe developmental delays learn basic tasks (such as bathing, getting dressed, brushing their teeth, and feeding themselves)
  • help kids with behavioral disorders maintain positive behaviors in all environments (e.g., instead of hitting others or acting out, using positive ways to deal with anger, such as writing about feelings or participating in a physical activity)
  • teach kids with physical disabilities the coordination skills needed to feed themselves, use a computer, or increase the speed and legibility of their handwriting
  • evaluate a child’s need for specialized equipment, such as wheelchairs, splints, bathing equipment, dressing devices, or communication aids
  • work with kids who have sensory and attention issues to improve focus and social skills

We took our son to Sensory Kidszone to find out what his sensory needs are and to help with some behavioural issues.

You can watch the video here.

For the report, click here.