Myths and misinformation: setting the record straight on Autism

In researching many of the stories I’ve written these past six months, it has sometimes been difficult to discern fiction from fact. And if it’s difficult for me – someone with a vested interest in finding out the ‘truth’ about Autism, who is indeed Autistic – what hope is there for the average person casually searching the internet?

If you’re newly diagnosed, or someone you’re close to is, and looking for help, you could be forgiven for believing, for example, that “a cure” for Autism does indeed exist. (Spoiler alert – it doesn’t!) Or that it will go away or get better as you get older – again, that won’t happen. (I’ll be 53 in a couple of months, was diagnosed a year ago, and, I realise now, I’ve been Autistic my entire life.)

Autism’s history, coupled with our ability to both consciously and subconsciously ‘mask’, or hide, our Autistic traits, has created a complex situation. But I do wish there was some way to scrape away from the internet all of the now outdated information, as well as the immeasurable amounts of crap.

If you mention, in casual conversation, conditions and diseases like cancer, or heart disease, or diabetes, or even asthma, most people will be able to rattle off some facts and end up pretty close to the mark. But ask them to tell you something, anything, about Autism and you’re likely to open a can of great big dirty toxic worms.

Of course, we all want what we want, and if we want it strongly enough, if you’re the parent of a young child diagnosed Autistic for example, you will believe (or are more likely to believe) the snake oil salesperson peddling their wares.

Add into the mix the fact that Autistic people themselves can’t agree on a whole bunch of matters relating to Autism (we are people after all so I suppose that was bound to happen), including what language to use, which to me, only makes already muddy waters even murkier.

Autism: One name to rule them all

Asperger’s syndrome, pervasive developmental disorder not otherwise specified (yes, that’s what it’s called), Autistic disorder, high-functioning Autism, childhood disintegrative disorder, and Kanner’s syndrome all exist because of the different ways doctors previously diagnosed patients who displayed certain types of patterns of social and behavioural issues – that all characterised Autism.

Whether you agree with it or not, in an effort to do away with all the confusion, the latest iteration of the Diagnostic and Statistical Manual of Mental Disorders, the DSM-5 (2013), which the American Psychiatric Association compiles at random intervals, replaced all other terms and diagnoses in favour of that single designation.

‘Asperger’s syndrome’, for example, hasn’t existed as a condition in its own right for a full decade, yet I see and hear it used constantly.

These days, rather than Asperger’s syndrome, we have a diagnosis of Autism level 1, which is what I am.

But don’t be fooled by those who would have you believe that level 1 is “mild” or that because I’m level 1 I’m “high-functioning”.

Labels like those suggest that someone diagnosed level 1 doesn’t need any assistance or supports. But I do. It just isn’t to the degree of someone diagnosed level 2, who typically require more support in their daily lives, or level 3, the level at which Autistic people need the most support of all.

Terms like mild and high-functioning also suggest to some that “you’re not very Autistic”, or that you haven’t experienced significant stress, anxiety, and depression, like I, and many other Autistic people, have. That I’ve silently battled these associated conditions my entire life is largely as a result of not knowing I was Autistic, and struggling to live in a world not designed for me – the non-Autistic world.

There’s a reason I prefer my own company to that of others, that I tire quickly when socialising or ‘out and about’, that I’ve moved from one job to another with regularity, and why, last year, I crashed and burned completely.

There’s nothing mild about any form of Autism. An Autistic person might be able to “convince” you they’re not Autistic by repeatedly putting on the kind of Oscar-winning performances that would leave Meryl Street or Daniel Day-Lewis in their dust – but that’s the masking, something most Autistic people learn early on in life to excel at.

It’s my strong belief that harmful, invalidating terms like “high functioning” and “mild” should be stricken from the vocabulary of all and sundry – particularly from those of us who are Autistic – because of the messages they unwittingly convey to non-Autistic people.

I couldn’t tell you why some Autistic people prefer to be known as Asperger’s rather than Autistic. Maybe it’s because that’s the diagnosis they received “back in the day.” Maybe it’s habit. But maybe it because ‘Autism’ – the word itself – comes with a hefty dose of stigma attached to it.

Given a choice, however, I’ll take a gravely misunderstood neurodevelopmental condition you’re born with over one that takes its name from an Austrian physician named Hans who allegedly (code for ‘most likely’ if you’ve read about it) sent children to a Nazi German clinic that murdered disabled patients. That and the fact that Mr Asperger’s work in Autism research circles is now being challenged and outright discredited.

We were able to move on from the horse and buggy. We know now (well, most of us do) that the earth isn’t flat. So for the love of God and the sake of clarity, can’t we all agree that Autism is just that?

Autism is on the rise – it’s a veritable epidemic!

That’s the view out there in internet land – of something in the water, or pollution, or poor parenting (on the mother’s side of course).

But guess what, that’s yet more misinformation. A lot of it damning and damaging, to say the least.  

I didn’t suddenly become Autistic at age 52 when I received my diagnosis. I, like every Autistic person, have been Autistic since birth.

Pollution, while it’s an issue we definitely need to tackle, isn’t the culprit. There isn’t any “cause” as such that anyone can point to – unless it’s fabricated.

Instead, what is increasing is our awareness and understanding – of Autism and its potential explanation for the untold pain and confusion people like me have experienced throughout our lives.

What’s happening then is something of an awakening, and it means that more of us are looking at Autism and seeking a diagnosis.

For some, like me, that takes the form of a formal diagnosis, while for others – who can’t access a formal diagnosis for a number of reasons – it might mean using screening tools like the ones I have on my website.

This, for many recently diagnosed Autistic adults, is a ‘light-bulb moment’, one that explains (not undoes) the damage caused by years of misdiagnosis – and it’s this that in turn is causing the numbers of Autistic people throughout the world to rise.

According to the Centers for Disease Control and Prevention (CDC) in the US, for example, the occurrence of Autism increased by 178 percent between 2000 and 2016.

While in Australia, between 2015 and 2018, the years immediately following the changes to the DSM, the number of Autistic people increased by 25.1 percent to more than 205,000.

There’s no doubt that consolidating Autism into a single diagnosis with three distinct levels within the DSM-5 and, where available, screening of children, has also contributed greatly to the growing numbers of people being diagnosed Autistic.

According to the American Academy of Pediatrics’ most recent study, 1 in 44 children aged 8 across 11 states in that country were diagnosed Autistic, making it more common than childhood cancer and diabetes.

Worldwide, the average is much less: 1 in 160 children.

But the World Health Organization believes that this is most likely due to under-diagnosis, especially in low- to middle-income nations.

Education therefore is a major contributor. As I wrote last week, Autism wasn’t even on my radar, or on my parents’ radar, when I was younger – not even at any stage during the past 50 years.

It’s why if we can continue to spread the word – the real word – about Autism and what it looks like, I know the numbers of people diagnosed Autistic will only continue to rise.

Aren’t vaccines a major cause of Autism?

Respectfully, please pull your head out of your arse (Australian spelling of ‘ass’ for those of you in the US who might not be crystal clear on what I mean).

For all the good they do, vaccines sure do get demonised, don’t they? (Would any of us even be breathing today if it weren’t for the miracle of the vaccine?) I really could go all soap-box here, so passionate am I in my support of vaccines and so highly do I hold in contempt those who speak out against them.

But I’ll rein myself in and try and stick to the facts as I’ve extensively researched them.

The reason so many people seem to still believe in the link between vaccines and the onset of Autism is down to two studies by a single individual who appears to have had it in for the measles vaccine for years.

In the first study published in 1998, Dr. Andrew Wakefield suggested that the measles, mumps, and rubella (MMR) vaccine – widely administered in vaccination programs throughout the world – may predispose children to pervasive developmental disorder, known today simply as Autism.

Almost immediately after this ‘case series’ appeared in Lancet, many other researchers conducted and published epidemiological studies successfully disproving this link.

However, it took Lancet 12 years to retract the study, with Wakefield losing his medical licence and the British medical journal stating that: “…several elements are incorrect, contrary to the findings of an earlier investigation.”

But that didn’t stop Wakefield and some of his co-workers publishing a second paper that examined the relationship between the measles virus and Autism – a study that was also critically flawed.

Sadly (devastatingly in some cases, I’m sure), despite rigorous studies – some involving sample sizes of over 1 million children – reaffirming the fact that there is no link between vaccines and the development of Autism, the effects of that study by Wakefield et al. are still seen to this very day.

In a 2017 survey, 48 percent of respondents in the United States answered “true” or “unsure” to the statement: “Some vaccines cause Autism in healthy children”, while in France, England, Italy, and Sweden, the numbers in the affirmative are even higher.

Some researchers have since characterised Wakefield’s initial study as “perhaps the most damaging medical hoax of the 20th Century”, with reviews of the evidence by the Centers for Disease Control and Prevention, the American Academy of Pediatrics, the Institute of Medicine of the US National Academy of Sciences, the UK National Health Service, and the Cochrane Library all finding no link between the MMR vaccine and Autism.

Perhaps most unsurprisingly, Wakefield continues to defend his research and conclusions, saying there was no fraud, hoax, or profit motive behind his actions. He is now (also unsurprisingly) a leading advocate for the anti-vaccination movement.

I’m going to stop there now because this is all very depressing, and I’m tired, and I want to go and eat lunch. But not without providing you one final note of caution (in case you missed it the first time around).

I’ve said it before, above and in other articles on this website, but I need to write it again here, explicitly, because the internet lies and says that it’s possible, when it isn’t.

There is no cure for Autism. Autism is part of who a person is. It’s the way that an Autistic person’s brain is wired. You cannot trust anyone who says otherwise. They are preying on your vulnerability. They want your money. They want you on the end of their hook. (Or they’re just a sadistic sod who wants to hurt you, or your kids, using abusive methods in an attempt to control what they see as “undesirable behaviour”.)

Got that? Good.

Also, very quickly, before I go:

  • Not all Autistic people are the same or have the same difficulties and talents
  • Not every Autistic person possesses an amazing ‘savant’ skill (but, speaking for myself, I sometimes wish that I did)
  • Many Autistic people have multiple co-occurring conditions, despite what you might have read. Some of these include:
    • intellectual disability or developmental delays
    • seizures and epilepsy
    • tuberous sclerosis
    • anxiety and depression
    • gastro-intestinal problems
    • feeding issues
    • disrupted sleep
    • motor challenges
    • connective tissue disorders
  • Not every Autistic person has an intellectual disability (but those diagnosed level 3 Autistic sometimes do)
  • Only some Autistic people don’t speak – and for some, their ‘muteness’ is situational
  • Autistic people experience the full range of emotions, including empathy – to suggest otherwise is to say that we’re not human
  • Autistic people can form relationships and friendships – I’ve been with my wife for almost 20 years, and my best mate and I have been friends for more than 25
  • Autism isn’t caused by bad parenting – but parents who show understanding and compassion to their Autistic children sure can help them muddle through the early stages of life
  • Autism isn’t a mental health condition – it’s a neurodevelopmental one, though, as I’ve already mentioned, many Autistic people do also suffer with anxiety and depression because it’s tough being a square peg in a world filled with round holes 

If you want to know even more about what Autism actually is, and steer clear of all the bogus information, then read a website like this one, or others like it, written by real life Autistic people. We aren’t interested in taking your money (apart from a small donation – thank you to those who have already given – to help keep the website afloat – you can click on the button below thank you very much! 🙂) or perpetuating any myths about Autism in order to carry on the misguided legacy of one’s life’s work.

And, finally, finally, I get that not everyone’s motives are sinister (perhaps just misguided) and that some people value their freedom of speech above everything else.

But if we can all look at the bigger picture just a little more often than we sometimes manage to, we might help reduce the stigma associated with Autism, and shift the spotlight from finding the impossible cure, and on to increasing and improving the support Autistic people and their families need.

This story forms part of a series of blog posts written to coincide with the first year anniversary of my Autism diagnosis, each highlighting a key ‘takeaway’ from that first 12 months. I hope you enjoy reading them.

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