Honestly as a parent I am exhausted by the misunderstanding and misinformation that exists around autism. Today I am devastated that the American administration are responsible spreading such dangerous misinformation. Sharing false information is so damaging, people remember sensationalist headlines far more than detailed retractions or corrections shared later on.
Over the past decade in the UK & US I have been pleased to watch a rise in recognition and understanding of neurodiversity. However that increased recognition of autism is too often misunderstood as a rise in cases.
Today we are thrust back to the MMR media storm of the 90s and the refrigerator mothers of the 1970s. The announcement from RFK Junior and President Trump regarding the ‘autism epidemic’ and the link between autism and Tylenol in pregnancy is painful to watch. The constant underlying suggestion that autism is caused by vaccines has been debunked so many times.
For anyone wondering Tylenol is Aacetaminophen which is paracetamol in the UK (an example being Panadol).
Not associated with autism
I have read so much on ‘causes of autism’ and had the privilege of working with thousands of neurodivergent families. I can very confidently say that autism is related to genetics. Trying to find reasons / causes is as complicated as asking a question like what causes red hair or green eyes! If you listen carefully to announcements, they do flag that it is complex and they have not got the answer.
There has even been recent study in 2024 looking specifically at ‘Acetaminophen use during pregnancy and children’s risk of autism, ADHD and Intellectual Disability’ with the conclusion that – ‘Acetaminophen use during pregnancy was not associated with children’s risk of autism, ADHD, or intellectual disability in sibling control analysis.’ This study was the largest of its kind using nationwide cohort study with a sample of 2 480 797 children born in 1995 to 2019 in Sweden. You can see details here.
I can also confidently say that I used paracetamol in my second pregnancy and not in my first and I have two autistic children.
It is so dangerous to spread sensationalist misinformation. Paracetamol is the one painkiller that women are recommended to take in pregnancy when needed. The suggestion that women are using it unnecessarily and should ‘tough it out’ is extremely questionable. Todays announcement is likely to cause many to avoid it even when needed.
Looking for answers
Neurodiversity is really complex, recognising and then supporting a neurodiverse population is really challenging. We learn pretty quickly when attempting to create inclusive environments and meet everyone’s needs things it doesn’t work for everyone.
Understanding the complexities of differences in communication and sensory processing is a huge shift in thinking for society as a whole. However looking for a cause and something to blame for this perceived rise is not helping anyone.
I know there will be many parents that are scared, struggling and looking for answers for their children’s differences, especially while children are younger. I too struggled to understand and looked for a why in the early days with my boys. The more I learnt about autism and neurodivergence the more I saw it undiagnosed across family and friends. It is no surprise to me that we are seeing a rise in diagnosis, it is long overdue recognition of differences that we have too long ignored.
A further much more complex aspect is that when we talk about autism there is a huge spectrum of needs. I think too often we are looking at complex individuals where additional learning disabilities are in the mix and blaming autism for challenges that are more likely related to the learning disability. Autism & Learning disabilities are separate conditions, even thought many individuals will have both.
However this focus on trying to find a cause / fault something to blame is really damaging our community. I would much rather see the emphasis on education and support for families and improving accessibility within society.
The collective eye roll
I know so many people, parents and professionals alike did the collective eye roll when we heard Trump announced just a few months ago that they will have answer to the ‘cause of autism’ in September. Millions has been spent over decades on this question and the answer has always been it’s genetic and complex.
It is terrifying just how often different pseudoscience and supplements are touted as the latest cure for autism. It is almost always sensational misrepresentation of the facts.
Now I don’t know anything about leucovorin the folinic acid mentioned with a suggestion it can decrease symptoms in autistic children with Folate deficiency. I would always caution any claims with the following:
- What is the evidence for this, a parent saying they are seeing an improvement or a study with very small numbers of children are not a basis to make any assumption regarding medications or treatments. You need to see longitudinal study involving large numbers to have any basis of evidence.
- Who will benefit from the claim, anything that will cost you money is likely to be pushed for financial gain.
- All humans have differences in their medical / body make up. Some will see improvements from changes especially in the short term, this does not necessarily link to autism.
- It is easy to see improvements when you are desperately looking for them.
The best thing you can do for neurodiverse family members is understand them and make adaptions to support their needs.
The evidence suggests that there is no link between autism and paracetamol and for anyone still wondering studies have overwhelmingly found no link between autism and MMR (see more information here).
