Showing posts with label incidence. Show all posts
Showing posts with label incidence. Show all posts

Tuesday, 28 March 2023

Are any autism statistics credible? Most are not.

The best place for many statistics

In 2021 the UK government carried out a census and in that census there were some voluntary questions about sexual orientation. A surprisingly large 92.5% of respondents, aged 16 or over, answered the question on sexual orientation and just 3.2% identified as gay, lesbian, bisexual, or another sexual orientation (LGBT+). 

Even in the gay capital of the UK, a city called Brighton, only 14% identified as L or G. 

2021 census: What do we know about the LGBT+ population?

Go back 40 years and many LGBT people would have undoubtedly lied about their orientation, or just refused to answer the question. In most Western countries this is no longer the case – the pendulum has swung very much in favour of all minorities.

When my elder son was applying for jobs, the first part was always online and one of the first questions he faced is what is your sexual orientation – that is meant to be a sign of progress, apparently.  Having started work he discovered that the real key factor of the selection was, not surprisingly, whether you will fit in and what you like to drink down at the pub. I guess they want meat-eating colleagues who like a drink, or two.  Not a place for teetotal vegetarians.

If you watch CNN, the BBC or read news from a liberal source you might think that 20% were LGBT.  I would have guessed 10%.  In research targeting young people you also get vastly inflated figures, because their views are shaped by social media which rarely reflects reality.


Back to Autism

In the current diagnostic framework autism is split into level 1 (least affected), level 2 (moderate) and level 3 (most affected).

In some countries only a small number of very specific people can make a diagnosis, whereas in others a much broader group can hand out a diagnosis. In some countries you can effectively buy the diagnosis you are seeking.

In some countries only kids with an autism diagnosis can get free early intervention. Some doctors are diagnosing autism in a toddler with an intellectual/development delay because they know he is likely to benefit, even though he does not technically qualify.

In Australia having a level 1 diagnosis does not automatically entitle you to any free services and it was recently reported that doctors are changing the diagnosis to increase the child’s entitlements. 

Children are being diagnosed with autism more severely to secure NDIS funding

When I visited our local special school many years ago to meet their piano teacher, I learned that the school had a large Roma population and so some autism parents did not want to send their children there.  I asked why there were so many Roma kids. I was told they do not have autism, they are classified as having MR/ID, which then entitles the parents to financial support.

Many readers of this blog told me that if they improve their child’s cognition they will lose supports, so they keep on using an old IQ test result.  


So do I believe this recently published chart from the US?


It tells us that in 4 just years the number of kids with autism and MR/ID has doubled to  more than 1%.

It is not credible.

Here is the source:




Here is a chart showing autism prevalence in specific states in the US in 2020.

California leads the pack.


“Only” 22% of kids with ASD in California also had intellectual disability (MR/ID) compared to 48% in Arkansas.

But, that is because kids are twice as likely to get an autism diagnosis if they live in California.  This is because they are diagnosing many minor cases that would not get diagnosed in Arkansas.






Current incidence of autism

If 4.5% of 8 year old Californians have autism, that likely equates to something like 7% of boys and 2% of girls.

We know that about 20% of school children have some special educational need.  We know that about 4% of Americans will develop bipolar disorder, about 0.5% will develop schizophrenia and approximately 9% of adults in the U.S. have some type of personality disorder.

Let’s assume 10% of Americans are LGBT, well maybe better say Californians, to keep the peace.

We know that many LGBT people experience bullying and exclusion which will give some people symptoms that do indeed overlap with those of mild autism and hence they may choose to identify as autistic, get a diagnosis, join the autism club and make TikTok videos.


Future incidence of “autism”

I would predict the published incidence of “autism” in 8 year old Californian boys will reach 20% in the next decade.

Am I worried? Not really. It’s nonsense.

Any increase in genuine, severe, non or limited-verbal autism, with IQ<70 is a problem.  It could and should be addressed, but it will not be.

By the way, this kind of autism does not need the new name “Profound Autism”, that has been proposed by the Lancet Commission.  It already has several names, including Classic Autism and Autistic Disorder.  It just needs medical treatment! Go from level 3 to level 2, maybe passing some Australians going the other direction, seeking more money from NDIS.


Statistics in Autism Clinical Trials

All clinical trials involve statisticians, lots of data and hence lots of charts.

Unfortunately, almost all autism clinical trials are flawed from the outset.  There is no singular autism, but rather hundreds of biological variations that produce symptoms that appear to overlap with this fuzzy autism spectrum.  

Lump in all these different types of autism and of very different levels of severity and give all the kids the same therapy.

When a subgroup does respond, ignore it because it is too small; the overall clinical response does not satisfy the goal/endpoint of the trial.  The trial is branded a failure.

In the bumetanide trial as an example, what percentage of parents actually gave the pill every morning to the kids for the duration of the trial?  If the trial was during the school term, there will have been problems with needing to pee on the way to school and for the first 2 hours at school. After complaints from school and accidents in the car, what percentage really gave the pill every day?

As some readers of this blog have proposed, “I’ll just give it at the weekend”.

Combine the behavior of the parents, the school bus driver and the class teacher with the trial using a dose 50% too low, is it a surprise the statistics show that the phase 3 trial failed? Not to me and many others.

Statistics on Treatable ID and single gene autisms

We are told that syndromes leading to treatable types of intellectual disability (MR/ID) are so rare that it is not cost effective to screen children for them.

We are also told that there are numerous single gene autisms, but that they are ultra rare.

Since almost no children with autism are routinely screened using genetic testing, there is no way to know just how rare treatable ID or single gene autism actually are. 

The current statistics on the incidence rates are nonsense.


Garbage in, garbage out.

Since it was first coined in the world of computer science in the 1950s, the phrase “garbage in, garbage out” has been a popular metaphor for flawed, or nonsense data input that produces flawed or nonsense output, aka “garbage.”

Mark Twain popularised the phrase "lies, damned lies, and statistics" to describe the persuasive power of statistics to bolster weak arguments.

Or, as I would say, if you need a statistician to prove your point, you probably don’t have one.