Unproven and dangerous treatment attempts of neurodivergence are spreading, sometimes supported by European Union funds. We urgently need to increase awareness among policy makers and the broader public that those harmful attempts to crack-down on human diversity need to stop.
By Sara Rocha, Associação Portuguesa Voz do Autista, member of the European Council of Autistic People (EUCAP)
Historically, and to this day, the search for a prevention, treatment, and cure of Autism, had a constant tread of human rights abuse and severe impact into the health of autistic people throughout the world.
According to Dr. Paul Carbone, chairperson of a subcommittee on autism at the American Academy of Pediatrics: “Many families of children with ASD [autism spectrum disorder], between 50-75% in some studies, pursue complementary and/or alternative therapies,”. This high level of openness for the use of unproven therapies, is creating a very lucrative industry of cures at the European level.
The Westminster Commission on Autism defined several critical points on the needs of regulation of unproven treatments in the United Kingdom, and points out how the Research Autism website lists over 1000 therapies, treatments and interventions for autism, with a lot of them not having enough research to understand the immediate or long-term impact on the health of autistic people.
Currently, the use of experimental or unproven treatments for Autism is running rampant, with limited ability to regulate it and prevent it.
Experimental/alternative treatments that are being applied in Europe:
- Miracle Mineral Solution (Chlorine dioxide or industrial bleach): it is mix of sodium chlorite and citric acid, which originates a strong bleach liquid that is used on textiles. It is sold as an antimicrobial, antiviral, and antibacterial liquid that is a remedy for autism, cancer, HIV/AIDS, hepatitis, flu, and other conditions. The recommended dose given by sellers can cause nausea, vomiting, diarrhea, and symptoms of severe dehydration. At least, 7 people died in the US, 2 in Argentina, not counting hospitalizations.
- Chelation therapy: it is a treatment used for lead-poisoning which is applied to Autism based on the myth that it is caused by vaccination. Chelation claims to cleanse the body of toxic chemicals and heavy metals, such as mercury, by binding to them and “removing” them from the body. It can cause dizziness, nausea, headache and diarrhea, low blood pressure, cardiac issues, seizures, brain damage, liver damage, kidney damage, dangerously low calcium levels and anemia. In 2005, over 10.000 autistic children were chelated, with at least one 5-year-old autistic boy dying.
- Vitamin D or “Protocolo Coimbra”: based on the idea that Autism is an auto-immune disorder, it prescribes vitamin D supplements that range from 40000 to 200000 IU daily, even though the safe upper limit of intake is set at 4,000 IU per day.
- Hyperbaric oxygen therapy: involves breathing high levels of oxygen inside a pressure chamber with a pressure usually greater than 1.4 ATA (absolute atmosphere). It can cause side effects, such as ear barotrauma, fatigue, headaches, or claustrophobia. Review studies do not recommend this therapy in autism, and there are no scientific indications that it works.
- Neurofeedback: a computerized method based on tracking electrical activity of the brain (EEG) and giving feedback about how to change it.
- Family constellation therapy: spiritual belief that thinks autism was caused by serial killers and abortions in the family tree with rituals to “clean the family”.
Other treatments that we are aware that are being sold are: crystal therapy, ear candles, spiritual intervention, aromatherapy, stem-cell treatment or GcMAF, juice plus diet, raw camel milk, Coconut oil, cannabis, clay baths, exposure therapy (including slapping), extreme diets such as gluten-free, casein-free, raw vegan diet or a ketogenic diet, CEASE therapy (based on not vaccinating), rerum, not letting children to watch TV (digital autism), essential oils, acupuncture, DAN (defeat autism now) therapy, homeopathic solution with diluted rapid dog saliva, turpentine and many more. Chemical castration and electrical shocks are being used in the USA, although, there is no indication that are being used in Europe.
Although these treatments are clearly unproven and unethical in how they are being given to vulnerable disabled people, the treatments that are currently under research in a medical setting, can sometimes be problematic and potentially harmful too.
The procurement of cures or treatments to improve social abilities or empathy in Autism has been severely criticized by autistic advocates since recent studies, such as the Double Empathy problem by Dr. Damion Milton, showed that empathy and social abilities of autistic people are processed and communicated in a different way than non-autistic people, not absent. However, a project on the use of transcranial brain stimulation (tDCS) as a treatment for Autism, called STIPED, was funded as part of the European Union’s Horizon 2020 research and innovation programme with a total of six million euros over five years. The objective of the STIPED in the application in Autism is in how tDCS can improve “behavioural symptoms”, “social skills” or “social withdrawal”, which is worrying.
The outcomes and objectives on treatments and therapies directed to disabled people should be considered when funding and supporting their application, guaranteeing that they are focus and aligned with the CRPDF and independent living.
The lack of clear guidelines on interventions that are evidence-based (and the ones that are not), or guidelines that are not readable by non-medical citizens, combined with the lack of regulations on alternative therapies in vulnerable people and the absence of mechanisms for easy reporting with quick response, leads to a chronic information void, easily filled by disinformation and the growth of a lucrative, but harmful, treatment industry.
