Health

Tests and Treatments

What does medical aid cover?

Autism does not fall under any benefit on any medical aid, nor are any treatment or therapies covered under the Chronic benefit.

Blood Tests – This benefit comes out of your day-to-day expenses.

Stool Samples/ Urine Tests – General stool and urine test, i.e. checking for blood in the stool (gastrointestinal issues), parasites, bladder infections, etc., will also come out of your pathology benefits. For more detailed tests, it will not be paid via medical aid. 

Organic Acid Test – Nutritional and Metabolic Profile test: The Organic Acids Test (OAT) offers a comprehensive metabolic snapshot of overall health. It provides an evaluation of intestinal yeast and bacteria. Abnormally high levels of these microorganisms can cause or worsen behaviour disorders, hyperactivity, movement disorders, fatigue and immune function. It also includes markers for vitamin and mineral levels, oxidative stress, neurotransmitter levels, and is the only OAT to include markers for oxalates, which are highly correlated with many chronic illnesses.

• For an organic acid test, you look at R2140 with Ampath and R2300 with Pathcare. Or about R2300-R9000 through another medical company (Great Plains Laboratories does have a representative in South Africa). Not sure if Lancet does the same test.

Audiology, Dietetics, Genetic Counselling, Occupational Therapy and Speech Therapy are subject to day-to-day benefits.

Specialised Radiology – CT scans and MRI could be subjected to an annual overall limit per family.

At the time of diagnosis, I worked for a Medical Aid company, so we could afford to go the private route. There are some examples of the cost: 

2016 First blood test done via Metropolis (Lancet) cost R1847.00

2016 Stool Test done via Synexa Life Sciences cost R1590.00

2017 Methylation test via Nordic Labs cost R1608.90 (The whole test DNAHealth from DNAlysis is R2300.00, which also includes Oxidative Stress, Inflammation, Detox pathways, and Lipid pathways)

2019 Organic Acid test via Hexa Lab cost R1945.00

As you can see, the cost is very high, even if you have medical aid, because they don’t pay for these tests. 

Common Health Issues

These health issues are commonly noted among Autistics:

Gut Issues

• Inflammatory bowel disease
• Reflux
• Improper food absorption
• Dysbiosis of the gut (due to bacteria and yeast issues)
• Nutritional problems (including improper protein absorption)(i) (see blog post on Picky eating, here and here)
• Food opioids: gluten (wheat), casein (milk), rubiscolins (spinach), and soy (soybean)(i)
• Gastritis
• Leaky gut

Some studies suggest that the gut biome and Autism are linked.

Organic Acid Test (OAT) series: “Your Metabolism Has a Voice — Listen with Organic Acids Testing!”

Click the link to a blog post on gastrointestinal comorbidity and Autism.

Brain & Blood Disorders

• Methylation Issues
• Immune dysfunction
• Seizures disorders
• Purine disorders
• Heavy metal toxicity
• Persistent measles virus (or other viral issues – i.e. Lyme, HPPV6)
• Brain blood perfusion /Brain autoimmunity
• Elevated ammonia levels / Sulphonation defect
• Serotonin Defects  (Happiness and Mood)
• Lyme Disease
• Melatonin defects (which lead to sleep disorders)
• Thrombophilia (tends to clotting of blood)
• Dopamine effect (helps regulate movement, attention, learning, and emotional responses)
• Chromosomal issues
• Mitochondrial disease/disorders
• And other new issues are being investigated constantly.

MTHFR series – “MTHFR: The Gene That Powers Detox, Mood & More.”

Musculoskeletal conditions

• Abnormal gross motor function
• Dysmorphic physical features
• Bone pain with rash
• Growth failure due to vitamin C deficiency (scurvy)
• Fractures
• Ehlers-Danlos syndromes (EDS)/hypermobility spectrum disorders (HSD)

When it comes to how you want to treat these issues, it is a personal choice – treat with medication, treat biomedically or both or none at all (yes, there are those who would choose that option).

Treatment with medication means treating with pharmaceuticals – you go to the doctor, and they prescribe medication for the conditions you have. If you also have ADHD, you would take central nervous system stimulants like Ritalin, Concerta, Contramyl, Methylphenidate Douglas or Risperdal to manage hyperactivity and focus. However, because of the side effects, more medication is prescribed for sleep issues, mood and behaviour issues, tics and appetite issues.

Treatment through integrated/biomedical medicine means looking at deficiencies in the body, looking at toxins in the body and looking at the functions in the body. As previously mentioned, various physiological conditions are influenced by genetic disorders, metabolic dysfunction, nutritional deficiency, immune dysfunction, gastrointestinal disorders, and sleep disorders. These conditions can be picked up in the blood, urine/stool and DNA. So you treat the body systems – Vagus nerve treatment, supplements like your B-vitamins, NAC, etc.

Treatment through both You start with the integrated medicine – the urine (OAT) and stool test will tell you about what is going on in the gut, the blood test looks for allergens and other immune dysfunction and the DNA (MTHFR) helps to create targeted treatments(i) of both natural and pharmaceutical.

DNAlysis Series – Personalised Nutrition 

Cost

By now, you have come to realise that treatments and therapies are not cheap.

Those in the poorer communities or in the low-income bracket will find it very hard to support their child on the Spectrum. Though some of the medications are available for free or at a lower cost at the Clinics, any special diets, special clothes (due to sensory issues) or equipment, schooling and transport, etc. will cost a lot.

For those who qualify, you can apply for a grant from SASSA (South African Social Security Agency). You will have to go and see an official at your local SASSA office to complete the forms to register your child for a Care Dependency Grant. The current grant amount is R2000 (2023).

For your child to qualify for a grant:

• Your child must either see a doctor at Tygerberg or Red Cross Hospital. Because SASSA is government-supported, the diagnoses must come from a doctor at a state-owned facility.
• The applicant must be a South African citizen, permanent resident or refugee;
• The applicant and child must be residents of South Africa.
• The child must be under the age of 18 years;
• must submit a medical / assessment report confirming permanent, severe  disability;
• The applicant and spouse must meet the requirements of the means test (except  for foster parents);
• The care-dependent child/children must not be permanently cared for in a State Institution.

Application for SASSA or renewal of SASSA can also be done when your child attends a government-subsidised special needs school.

If you are more financially well-off and pay taxes, you can apply for a rebate from SARS (South African Revenue Services(i)). You will have to go see an official at your local SARS office to complete the forms to enable you to claim back certain expenses in support of your child’s Autism. This is not without its own issues.

• List of Qualifying physical impairment or disability expenditure

Other Funding Options:

Many parents have started Trusts or even NPOs (Non-profit organisations) to help with day-to-day expenses. They have regular fundraisers or high teas for family and friends. If you are lucky, you can get someone to sponsor the printing of t-shirts, caps and water bottles.

For those interested in starting an NPO, here is some more info:

• Model Constitution
• Application for NPC Company registration
• Application for NPO
• Frequently asked questions

Government Programmes

The Western Cape Government has the Persons with Disabilities Programme, which aims to assist those living with various disabilities.

Sheltered Workshops:

You can follow the link to DWDE, The Living Link, Oasis Association, Western Cape Government site, Vasco Special Needs Centre, Spectrum Chef Academy (for those interested in cooking or becoming a chef) and WCAPD.

Most often, the people employed at the sheltered workshops attended the School of Skills programme offered via some special needs schools.