There are a lot of therapies that have shown themselves to be helpful for autistic people. These therapies can teach skills, help figure out alternative methods of communication, and improve mental health, among other things. A good therapy is one that respects the dignity of autistic people, is safe and tailored to the individual’s needs, and has goals chosen as much as possible by the person. It is important that therapies enable good lives rather than trying to make people “less autistic.” Good therapies are also evidenced-based, which means that they are backed up by a large amount of scientific research and best practices.
Unfortunately, there are also many popular therapies for autism that are pseudoscientific in nature. This means that they look or sound like they are based on science and evidence but are actually fraudulent and misleading.
So why are there so many pseudoscientific therapies for autism? There are three main reasons for this:
- Many parents don’t know much about autism and don’t know how to react when their child is first diagnosed. Some parents panic and worry that being autistic will cause a lot of hardship for their children or themselves and seek to change that anyway they can.
- We know from research that early support is beneficial to both the child and the family when it comes to facilitating communication and teaching skills, and so some parents feel pressured into trying certain things quickly without much research.
- For a long time, the focus of research was on curing or otherwise reducing autistic traits, rather than providing support or acceptance, and this ideology was promoted by many well-known autism websites, which helped create the market for these kinds of therapies.
It is because of these reasons that therapies without a strong evidence-base are able to capitalise on the good intentions and/or desperation of parents to sell them services that may not work, and in some cases, may even be physically and psychologically harmful.
What are some examples of fad therapies?
An example of a common pseudoscientific grift I see as a researcher for Altogether Autism is “orthomolecular medicine.” The premise of this alternative medicine is that autism is caused by nutrient deficiencies, but these deficiencies can be treated with expensive supplements that are tailored to your child’s needs. There is no evidence whatsoever to support this, and families that have fallen victim to this scheme end up paying hundreds to thousands of dollars each year for a therapy that does not work. The Yasko Protocol, CEASE therapy, and ‘functional medicine’ are also terms you may come across that refer to different but similar fraudulent practices.
The following is not a comprehensive list of fake therapies, but offers insight into other common scams to watch out for:
Naturopathy
Naturopaths promote ‘natural medicine’ and practices, which is to say medicine and practices that are not scientifically proven, or evidence based. Naturopathic medicine comes in many different forms, but a good rule to remember is: “if natural medicine worked, it would just be called medicine.” Perhaps the most encountered type of naturopathy is called homeopathy. Homeopathy is based on the false premise that a substance that causes a disease or condition can also be diluted and used to cure that disease or condition. In the case of autism, some homeopaths believe that vaccines cause autism, and by diluting the chemical components of a vaccine to the point that what remains is ostensibly just water, this can cure autism. There is obviously no evidence to support this, yet around 18 Kiwi homeopaths offered this service as of 2019 (Hancock, 2019).
Chelation/Detoxification
Chelation is a type of therapy that removes toxic chemicals from blood. It is supposed to be used for people who have experienced metal poisoning; however, it has been co-opted as an autism treatment. Proponents of this believe that excessive chemicals, like mercury, are present in the blood of autistic people, and that this chemical excess is the cause of autism. They believe that removing it and ‘detoxifying’ the body will in turn cure autism. As with many pseudoscientific cures, this is also linked to anti-vax rhetoric, as some vaccines used to contain thimerosal (a related chemical to mercury) in exceedingly small amounts. There is no evidence that chelation is helpful for autism, but there is evidence that it can be harmful and can cause low blood pressure, heart issues, liver damage, brain damage, seizures, nausea, and even death in one case.
Hyperbaric Oxygen
Hyperbaric oxygen involves breathing an increased level of oxygen (between 24% to 100% more than normal) while in a pressurised chamber. It is a well-established treatment for things like decompression sickness, but not for autism. The belief behind this is that autism is related to inflammation and a lack of oxygen in the brain, which can be ameliorated by intaking a high amount of oxygen. There is no evidence to support this, and there is some evidence that this could be dangerous, with the potential to cause headaches and middle ear damage. It is also expensive.
Chlorine dioxide (AKA Bleach)
One of the most dangerous ‘treatments’ I have come across is the use of bleach to try and cure autism. The belief here is that consuming bleach orally, through baths, or through enemas, will kill the ‘pathogens’ that cause autism. Needless to say, there is no evidence that this works, it is incredibly dangerous and can cause corrosive injuries, vomiting, stomach pains, diarrhea and death.
Warning signs of pseudoscientific therapies:
We’ve discussed some examples of fad therapies, but what about the ones that aren’t on the list? There are too many to possibly name, but here are some red flags to look out for the next time you’re reading about one of these therapies:
The promise of a cure
There is no cure for autism, and the idea of a cure is very offensive to autistic people. Any therapy that promises this or markets itself as reversing autism or offering ‘recovery’ from autism should be avoided.
Excessive use of testimonials as marketing and evidence
Any therapy that relies solely on testimonials as ‘proof’ that the therapy is effective in lieu of citing published research in a peer reviewed journal is an immediate red flag.
The cure for all that ails you!
Therapies that are marketed as a panacea (cure-all) are usually bogus. If you come across a therapy that claims to treat autism, ADHD, HIV and COVID-19 (like the Miracle Mineral Solution for example), chances are it won’t treat any of them.
Source credibility – where did you hear about this?
Was it from a trusted information provider, that is, someone who has had extensive training in their field and uses scientific evidence to support their claims? Or was it from someone on Facebook? Social media does provide a great way for people to connect and share advice and lived experiences, but it is not always the most reliable source of information. Hearing about something online does not automatically make it false but do be cautious of the sources of the things you read.
Warning signs of bad research:
Here’s where it gets tricky. Some of these scammers are very crafty. Occasionally I will come across therapies that claim to have robust evidence behind them, complete with links to research articles that back up their claims. On the surface, it all looks and sounds very professional, but upon reading the research articles, cracks begin to appear. If you are serious about avoiding pseudoscience and you take it upon yourself to check out some of these articles, here’s what to look out for:
No control group
In research, it is especially important to have a control group. This is a group that does not receive the therapy being tested to act as a baseline in comparison with the test group that is receiving the therapy. Often times this control group will be given a placebo (if the thing being tested is a medication or a supplement), or a sham therapy (if the thing being tested is a program or a therapy). This is to account for the placebo effect, a real phenomenon by which people report feeling symptom improvement after taking something or participating in something that has no medical value, e.g., a sugar pill in place of a painkiller.
Measurements are taken before and after the control group and the test group receive the treatment. If the results of the test group are significantly different to the control group, this shows that therapy had a legitimate effect, and not just a placebo effect.
It is common for pseudoscientific research to not include a control group, which makes it impossible for the readers to know if the therapy they were testing legitimately has a positive effect or if the changes reported are due to the placebo effect.
No randomisation or blinding
The key to the placebo effect working is belief. If people know that they just had a sugar pill, the placebo effect will not occur. Therefore, it is important that researchers engage in what is known as blinding. Blinding refers to concealing the true nature of the therapy from the control group and from the test group in the experiment so that they don’t know which group they are in. Great studies use double blinding where possible. This is when neither the participants nor the researchers know who is receiving a treatment and who is receiving a placebo until after the research is complete. This is done to prevent any conscious or unconscious bias from the researcher when conducting the trial.
Small sample size
In a perfect world, researchers would be able to get everyone to participate in a research project to find out if a therapy is helpful. Because this is impossible, what happens instead is researchers recruit as many people as they can in the hopes that the sample they get will be representative of the population of interest. The bigger the better. Conclusions made from small sample sizes can still be valid, however it is much more difficult to say with confidence that the results can be generalised to the wider population. Case studies are something to watch out for. Case studies involve only a single participant, which makes it extremely hard to say if a therapy can be beneficial to everyone, or if an effect was just seen with a single person with very particular circumstances.
Results have not been replicated/definite conclusions based on little evidence
A key part of the scientific process is repetition. Therapies need to be conducted multiple times under different conditions, with different participants, and different researchers to see if the results are consistent.
On a similar note, even if the results of a study are positive, researchers are often hesitant to draw firm conclusions before additional research studies are conducted. If an author is claiming definitively that a therapy is effective based off a single study, this is something to be wary of.
Correlation does not equal causation
Just because two things seem to be related, does not mean that they are related or that one causes another. An example would be the myth about vaccines and autism.
Claim: vaccines cause autism.
“Evidence”: children are getting more vaccinations and autism diagnoses have risen over the past few decades.
Reality: the diagnostic criteria for autism has broadened, more people are aware of what autism is and are accurately identifying it, and the neurodiversity movement has empowered autistic people to be open and proud about who they are.
Just because there appears to be a relationship between two things, doesn’t always mean that there is.
Conflicts of interest
Research requires funding, and sometimes this funding comes from companies or organisations that have a vested interest in the success or failure of what is being tested. For example, tobacco companies funding research into the dangers of vaping products; their main competitor. A project’s funding source doesn’t necessarily mean that the research was bad or that the results are invalid, but it is something to keep in mind.
This is a lot of information to take in, and I’m worried about making the wrong choice?
If you are ever unsure about the safety or effectiveness of a therapy, you can always contact us! At Altogether Autism, we offer a free, personalised complex information request service that is carried out by qualified researchers. You can find more information about this here: https://www.altogetherautism.org.nz/information-hub/request-information/
References
Hancock, F. (December 24th, 2019). Homeopathic treatment claims to ‘cure’ autism in NZ. Retrieved from the Newsroom website: https://www.newsroom.co.nz/autism-vaccines-and-homeopathy