The Public Perception Of Autism

I’ve written about the potential signs of autism elsewhere, so in this article, I’m going to talk about the public perception of this condition.

I suspect many people’s first exposure to the issue of autism was the movie Rain Man, starring Dustin Hoffman, which was released in 1988. The story was in part based on a real-life savant, Kim Peek (even though he actually had FG Syndrome rather than autism).

In fact, there have been dozens of movies (and documentaries) about autism, and my personal favourite is Temple Grandin, which I know I have mentioned elsewhere. In this movie, Claire Danes plays the eponymous autistic heroine who became an expert on the humane treatment of livestock.

More recently, there has been the TV series The Good Doctor, with actor Freddie Highmore playing the part of a surgeon who has autism.

So, what’s the point?

Well, I spend a fair bit of time in the virtual company of parents with autistic children, and a common problem I hear is that they do not believe these movies and shows present a realistic picture of what having autism is like.

And the fact is, they are both right and wrong.

Autism is normally used as a convenient shorthand for Autism Spectrum Disorder (ASD), and the key word there is “spectrum” – because it’s a scale.

At one end, there are the so-called high-functioning autistic people, including those with Asperger’s Syndrome, which is where the savant-like characters would fit, and at the other end, there are severe cases where people require around-the-clock support.

The Diagnostic and Statistical Manual of Mental Disorders, commonly abbreviated to DSM-5 (the “5” indicating the edition of this manual), currently recognizes three levels of autism – 1, 2, 3, with 3 being the most severe.

At the lower end, people can live almost normal lives (e.g. hold jobs, have relationships), but they may struggle with certain behaviours, communication skills and socialization).

At the higher end, people may need to be cared for and monitored 24 hours a day. They may:

• need to wear protective helmets, because they frequently bang their head against the wall
• also self-harm in other ways
• become violent, hitting others without warning
• have to wear diapers, even as teens and adults, because they do not have control of their bladder and/or bowels

It goes further than that, but you get the idea, I hope.

And it’s this latter category that you almost never see portrayed on television – which is why parents of profoundly autistic children are upset because it makes others think that these parents are making it all up, for attention (i.e. Munchausen syndrome by proxy).

This is also why these parents become incredibly annoyed when others say things like. “I’d rather have an autistic children than a dead one.” This is largely because:

1. Most people think autism is always like they see it on TV, and it’s not, not by a long way.
2. People have been led to believe that infections such as measles, which were common and benign childhood rites of passage when I was young, are usually fatal. Yes, they can be in third world countries, but in places like the UK and the USA, where children have access to better nutrition, health care, and sanitation, mortality was already very low before the first measles vaccine was introduced. (CDC figures show the death rate was about 1 in 10,000, and no children have died of measles in the USA for almost two decades.)

So, not surprisingly, parents with severely autistic children would rather have had them endure a week-long rash that would provide real immunity (in most cases) as well as other benefits, than a lifetime of having to be cared for and never being able to live a normal life.

Another common issue is people saying that parents with autistic children hate their children.

This could not be further from the truth.

When you have a child who is profoundly autistic, and who needs 24 x 7 care, you have to love them – there’s no other reason you’d put yourself through what they go through.

What they do hate, if anything, is what led their child to be autistic – it’s a condition that can forever change an entire family’s life.

There are some parents who do not regret that their children are autistic, but there are also plenty, maybe more, who wish it had never happened.

So, here’s one video that gives you a glimpse into the life of a parent of an autistic child, but there are plenty more available if you search on YouTube:

Does that look like the sort of life you’d want to lead – either as the parents or the child?

So, I understand where those parents are coming from – it affects their lives in almost every way imaginable, and they are legitimately concerned about what will happen to their autistic children once they are no longer there to care for them.

And the situation is getting worse – if you look at the autism statistics, the rate is increasing all the time.

I know that some claim autism is genetic and that these people have always been around, but:

1. If they’ve always been there, where are all the adults in their 40s and 50s and 60s, still wearing diapers and helmets? I’m 60 now, and I never even heard of it until I was at least in my 30s, and there were certainly no children at any of the schools I attended who would have been described as autistic. And this is not just me – you simply almost never saw this type of problem at all.
2. Since the autism rate has exploded during the past three decades, how is it possible for people’s genes to be changing so much so quickly to cause such radical alterations in behaviour?

I don’t want to get into what might cause autism, because it’s a highly controversial subject – and the truth it, nobody knows for certain.

On the one hand, the vaccine manufacturers and government and medical profession have all sorts of hypotheses, while simultaneously stating categorically that vaccines are not responsible (even though no such studies can prove that).

On the other hand, there is plenty of peer-reviewed science that can provide a working mechanism of how vaccines can cause autism, not to mention the thousands and thousands of parents who have witnessed regression first-hand.

I may or may not cover this topic in more detail at a later date, but for now, let’s return to the general topic – the perception of autism.

So, while as I said, I appreciate why parents of severely autistic children feel isolated and mocked, at the same time, I do not find portrayals of autistic people in some of the above-mentioned movies and shows to be models of a happy and successful life.

Yes, you may have certain skills you can use, but let’s take The Good Doctor as an example.

Dr Shaun Murphy, the autistic surgeon in question, may have a brilliant mind when it comes to diagnosing unusual conditions and visualizing potential solutions, but look at the problems he faces every day:

1. He struggles to communicate with his colleagues and his patients.
2. He has few filters in terms of speaking the truth, regardless of whether it’s the most appropriate thing to say.
3. He finds it difficult to build and develop relationships (his girlfriend is one of the most patient people I’ve ever seen).
4. He has severe problems with being touched.
5. He has certain obsessions, e.g. he has to have things done in certain ways.
6. And there are various events that trigger almost tantrum-like responses.

To me, that does not portray a life that I’d want to live, even given the specific skills he has.

And as I’ve said elsewhere, while I’ve never been formally diagnosed with autism, I have taken several online tests to see where on the scale I might fit. (Yes, I know these are likely less accurate than an assessment by a trained professional, but right now, this is my only option.)

The one I’ve taken most is this one, and just to be up-to-date, I took it again shortly before writing this article.

The average score, out of a maximum of 50, by the control group was just over 16, with some form of autism starting at 32.

The previous time I did this assessment, I scored 36, and today, my score was 40, because it’s not 100% static.

My results would put me in the high-functioning category, which sounds about right.

There are some aspects of this area of the spectrum that I definitely identify with, and some that I don’t.

For example, I have always had trouble communicating, reading people (e.g. their emotions, intentions), and I don’t like small talk much.

Would people who know me, or meet me for the first time, know that, technically, I’m autistic?

Probably not.

I have been aware of my limitations for a long time and for the most have also learned how to manage them, but I’m pretty sure it’s caused me issues over the years.

So if you did meet me and knew I had a form of autism, you might walk away thinking it’s not that bad – because in reality, compared to those with profound autism at the opposite end of the spectrum, it’s not.

But I certainly do not represent all autistic people – and would never claim to.

There’s one final factor that may influence your perception of autism, and that is people who say they are autistic who post comments on articles and social media posts, stating that they are happy they are the way they are.

The thing to remember here is that, by definition, those people are not severely autistic – because if they were, it’s highly unlikely they’d be able to interact online in the first place.

It is much more likely they fit into the medium- to high-functioning group, and as I’ve said, that can bring a few positives as well as an equal or greater number of negatives.

Conclusion

There is a saying that when you’ve met one autistic person, you’ve met one autistic person.

In other words, every autistic person is different – ask parents who have more than one autistic child and you’ll find out how true this is.

There are also those who make videos talking about what autistic people want, but you need to remember they are not speaking as representatives of the autistic community – they are only offering their own perspectives.

Unless something radically changes, and soon, this epidemic of autism is only going to get worse, and sooner or later, it is going to affect you, directly or indirectly.

But for now, the key take-away is that your current perception of autism may be inaccurate – if you’ve not been personally exposed to it, then the media is, generally speaking, not portraying the entire reality. And if you want to know why, then follow the money, as they say.

Additional Resources

These are suggestions for those who wish to delve deeper into any of the above:

1. Rain Man
2. Online ASD Test
3. Temple Grandin
4. The Good Doctor
5. Vaxxed – The Movie