Are you a worried parent of an autistic young person?

When parents first receive their child’s autism diagnosis, many are anxious, and wonder what they can do to help the child "recover" or be "cured". It’s a very understandable reaction, because autism is sometimes misdescribed as a disease or illness. 

Sometimes, natural parts of being autistic, such as having communication differences or important coping mechanisms like hand flapping (often called "stimming" by autistic people) are misunderstood and misdescribed as "core symptoms" that "need to be cured". 

Often, parents are told they must act right now, at any cost, or it will be "too late"! Some are even offered expensive finance schemes to loan them the money.  Pressure sales techniques … 

A dangerous multi-billion pound industry

Unfortunately, there is a multi-billion pound global autism "cure/ treatment" industry just waiting to exploit parents who are anxious and don’t yet know much about the topic. This can result in parents getting into a lot of debt, or even becoming bankrupt, from the needless costs. Others find their children are exhausted from relentless "treatment" processes, losing out on most of their childhood and every chance to be their authentic selves. Some children may even end up physically and mentally damaged, or in some tragic cases lose their lives, due to unproven and potentially dangerous "treatments".

As fast as regulators try to stop poor and illegal practices, and some arguably dangerous research projects, new ones pop up, and old myths re-surface.

As we know, autism is mostly genetic. In other words, the reason a child is autistic is often because their parents or grandparents are autistic, and they passed on the autism genes. Autistic people are born autistic, and stay autistic for life, despite some claims that there might be a miracle "cure". Most autistic people don’t want a cure or medical treatment for being autistic, though they’d certainly like access to good general healthcare, a better quality of life and better support.

How do you steer clear of the potentially dangerous scams?

Watch out for organisations and individuals who drive a hard sales pitch and share misinformation. This often includes:

• Dire warnings about how your child will be damaged forever unless you "act now" and that you will face a lifetime of regret for not helping your child in time.
• False claims that "treatment" is carried out by so-called "evidence-based clinicians". They are usually not experts. And being a ‘clinician’ doesn’t even have to mean having any autism expertise or even medical knowledge.
• False claims that their treatment, pill or potion has to hurt the child in some way to be effective. They may claim that "it’s like chemotherapy”. - No, it’s not! It’s just damaging the child.
• False claims that the child has to experience the "intervention" for many hours each week at home as well as at an expensive treatment centre, year after year, or all the alleged progress will be lost.
• Being referred to expert sales people and manipulators if you raise any concerns, who will try to convince you not to damage your child by removing them from the scheme.
• Grand claims that their wonder treatment is "neurodiversity-friendly" and/or that they "never try to stop a child from being autistic" (but if you dig deeper, you’ll find out they target all the behaviours that are natural to autistic people, like stimming or autistic ways of socialising). 
• Pretending that they are offering a "new version" of outdated practices that have been proven to be harmful to autistic people. It’s often still the same practices  that have been dressed up with new glossy brochures and glamorous sales teams.

Unfortunately, I’ve seen all of this, and more, over the last thirty years.

So, how do you keep your child safe and well, and find support for your family?

The Autism Central programme is there to help support parents and carers, and to direct people to good resources. But a big part of staying safe and well is also knowing which sorts of alleged "therapies" and "interventions" are likely to be highly damaging, potentially illegal, or could even be deadly.

Scams to watch out for

Please note that this is by no means a full list, but will give you some idea of the dangerous scams, "treatments" and "cures" that are out there.

• GFCF (“Gluten Free, Casein Free”) diets promising that if you cut out certain foods such as wheat or milk from your child's diet, they will no longer be autistic, or you will see improvements in behaviour. Current research shows no clear evidence of this, and raises concerns about side effects: “…children who adhered to the GFCF diet did not meet the recommended daily intake of nutrients…[also experienced more] gastrointestinal discomfort, weight loss, sleeping disturbance, and loss of appetite.” (See a large review of GFCF diets here)
• Chelation to get rid of "heavy metals" which are allegedly in the child’s body and which some believed cause autism. A number of deaths using this method have been recorded, and there is a long list of serious side effects. In my view, this is a highly dangerous procedure that has no chance of "curing" autism. (See review of chelation here).
• Bleach, as a drink or as enemas. Sometime this is called Miracle Mineral Solution, for example.  This is another highly dangerous procedure linked to deaths. (See article by the Autism Research Institute about bleach products here)
• Oxygen treatments, which involve putting a child in a tube and filling it with high pressure oxygen with claims that this will improve their autism. It doesn’t. It can however damage ears, cause damage to the nervous system, cause damage to lungs, and may result in other very serious medical events. 
• Leucovorin, a form of vitamin B9 (folinic acid), which claims to stop autistic behaviour. This has not been approved by medical teams specialising in children such as the American Academy of Pediatrics (AAP). Side effects can include major allergic reactions such as difficulty breathing and severe rash, as well as more infections, vomiting, diarrhoea, constipation, fatigue, hair loss and loss of appetite. (See review about Leucovorin here)
• Faecal Transfer, in which children are given tablets and enemas to allegedly "treat their symptoms" and make them "less irritable". My perspective: If a child also has a stomach condition like Irritable Bowel Syndrome (IBS) in addition to being autistic, it might potentially cause distress and make them more "irritable", but removing the stomach pain isn’t the same as "treating autism". (See review about faecal transfer here)
• Stem cell treatments, which involves adding new "stem cells" to autistic children’s bodies, often with painful injections or via chemotherapy-style drip infusions, which claim to cure autism. There are very major risks associated with this treatment, with no scientific evidence that it is effective, and it is not authorised by the NHS. There have also been police investigations into people claiming that this treatment will cure autism. (See review about stem cell treatment here)
• Drinking camel milk. There is very little research on this so far. A few studies noted small "behaviour" changes when testing this on small groups of boys.  All results appear to show that children still remained autistic after the treatment, which isn’t a surprise. See my views above on possibly helping solve a sore stomach, and mistakenly thinking that the reduced distress means "less autism". If so, this is not "treating" autism. (See review about camel milk here)
• Swimming with dolphins. Small studies have been carried out on this, which show no useful evidence that this has any impact, apart from the children potentially enjoying being with a captive dolphin, and the parents paying a lot of money for the experience. The dolphin’s views are not recorded. This is not "treating" autism. The same is true for anyone claiming that time with any other animal will "treat" or "cure" autism. It doesn’t. (See review about dolphins here)
• Herbal teas or other herbal potions. Some very ordinary supermarket herbal calming teas might help a few people feel slightly less anxious, but anxiety isn’t the same as autism.
• Exorcism, which is carried out by some small religious groups who believe that autism is caused by demons and will go away if they put the child through some extreme ceremonies. Some children have died from injuries and suffocation during these practices.

What can you do to support your child instead of wasting time and money on these alleged cures and therapies? 

Start by learning from reliable, autistic-friendly sources. Be an ally: listen to what your child wants for themselves, respect their ways of communicating and coping, and look for support that helps them feel safe, understood and valued. Most of all, make space for joy, connection and everyday moments together. Autism is not something to be cured. The aim should be to help autistic children thrive as themselves, with the right understanding, adjustments and support around them.

Useful links:

• Nature.com article: Complementary, alternative and integrative medicine for autism: an umbrella review and online platform -  A research review looking at "complementary and alternative’ approaches"(CAIMS)
• National Autistic Society: Advice and guidance around alternative treatments
• National Autistic Society: Advice about so-called "cures"
• NICE clinical guidelines: Clinical guidelines on support and management
• Study of autistic people's research priorities
• Parents of autistic children and young people explain their challenges and joys
• Research on autistic social communication and why it’s different, not broken.
• Blog by Ann Memmott about the positives around autism found by researchers