So what is autism?

When my wife mentioned that she thought our son might be autistic, I didn’t really know what autism was. Other than Raymond Babett in the movie Rain Man, I had very little experience or insight into the condition.

The following post looks at definitions of Autism from around the world. If you’re a parent wondering whether your child might be autistic, this is a light-hearted, slightly irreverent wander through the myriad of symptoms typical to autists. If the tone of the piece seems flippant or offensive, it is simply a narration of my own reactions and emotions as I started out on a fact-find after discovering that my child was affected.

Autism defined
(1) The UK

According to the National Autistic Society (UK national charity):

Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.”

http://www.autism.org.uk/about/what-is.aspx

Lifelong! Thanks a bunch. The first word in the definition means basically: this is irreversible, you’re stuck with it, you’re sunk. Not exactly a soft landing for bewildered parents still hoping for their child to deliver the ‘full-sentence avalanche’ so often forecast by well-meaning relatives..

(2) USA

How about a definition from a more upbeat country? How is it described by our can-do neighbors in the USA?

The Autism Society (of America) describe it as: “Autism spectrum disorder (ASD) is a complex developmental disability”…

Complex? Translate as: expensive (ever had a ‘complex’ problem with your car at the garage?). The good old Brits already told us that it is a developmental disability, weighing us down with ‘lifelong’. Then our buddies Stateside cheer us up with the excellent news that it’s also ‘complex’, which hints that either it can’t be fixed or it’s going to cost a lot to fix. Our, as my experience indicates, a little bit of both.

(3) Canada

Ok so the Brits have made it a prison sentence. The Yanks just made it expensive. What about their pals up north? What say you, Canucks?

Autism Canada start well on their homepage, with the encouragement, ‘See the spectrum differently’. Upbeat, open-minded. Things are looking up. What’s their definition of autism?

“Autism Spectrum Disorder (ASD) is a complex neurobiological condition that can affect the normal function of the gastrointestinal, immune, hepatic, endocrine and nervous systems. “

Whaaaaaaaat? ‘Complex neurobiological condition’ reads to the paranoid ASD parent as ‘brain damage starter with some organ failure as a main course’. The rest is a fun-filled smorgasbord of terror comprised mainly of:

  • eating and pooing problems;
  • ‘Hepactic’: When I hear ‘hepatic’ I think ‘hepatitis’ = liver failure of some description. So this is not encouraging;
  • endocrine and nervous systems I last heard mentioned in a news report about Sarin gas.

None of this is helping. I need hope. I need help.

(4) Australia

Ok breathe. Who else on this planet (a) speaks English and (b) has a fairly upbeat view of the world? The Ozzies of course! Let’s see what Aspect (Autism Spectrum Australia) has to say:

“Autism is a lifelong developmental condition (aw crud: back to the life sentence again) that affects, among other things, the way an individual relates to his or her environment and their interaction with other people.”

At least they describe it as a ‘condition’ not a disability. Gotta take the small wins.

Actually, there is hope:  I see at the top of their homepage it says : “A Different Brilliant”.

I knew the Ozzies would give me hope. I might use that for a book title.

Digging In
  • Disability: the Oxford online dictionary defines this as ‘ physical or mental condition that limits a person’s movements, senses, or activities’. If any disability, including Autism is severe enough, it can be all of these things. But Autism is a spectrum disorder, and a very wide one. It is highly likely that almost all autistic kids will have some sort of sensory processing challenges because that is the nature of the condition: different types of seemingly innocuous sounds, lights, smells and textures can all be traumatic to an autistic child. But ‘movement’ is not quite as big an issue and, if you’re ambitious and persistent enough, then most of life’s funner ‘activities’ can be accessed as well.
  • Developmental: ‘Concerned with the development of someone or something’. Ok, obvs. I guessed that. Second definition: ‘Concerned with ontogenetic development, especially embryonic development in animals’. Ooh fancy-schmantzy: let’s find out about ontogenisis: ‘The development of an individual organism or anatomical or behavioural feature from the earliest stage to maturity.’ Ok so this implies to the layman (me) that there is a ceiling or a limit on the child’s development. I hope not, but I want to find out more from an expert. According to Jennifer Richler, a clinical psychologist and science writer, there are a number of studies which have shown that many autistic adults have shed most or all of their ASD behaviours in adulthood (article posted 1st July 2013 on the Scientific American website).  
  • Lifelong: no real translation needed there. Follows on from our definition about ontogenesis earlier (oh, I’m an expert now). For all of my kid’s life into adulthood and after I die. So does that mean we just have to accept that our kid will be unable to develop past a certain fixed point of physical health and development, communication ability or in relating to things around him? Can’t he learn to adapt, both physically (to some extent, assuming no other health issues) and mentally/emotionally? And if he can learn anything, he can learn about how the world works, some of the social rules and maybe figure out how to deal with all of these weird sights, sounds and feelings. After all, he’s got his whole life to try. Articles like the one quoted in the previous paragraph give us hope.
Summary:

Ok so we have had views from around the world on what Autism is; some descriptions are terrifying, others much more tolerable.

Autism is a condition which affects:

  • how a person communicates with other people;
  • relates to other people, and;
  • how they experience the world around them.
My experience as a dad of an autistic child

As a parent of an autistic boy, I am fortunate enough to be able to say that it doesn’t feel like a disability to me. Maybe a social one; when I think of the problems that Nick has, they are all to do with being around other people. Communicating, interacting, playing the social game. Family gatherings, church events and outings to the park are where the problems occur and are the dread of ASD parents the world over.

But for all my stress about autism, Nick is actually happy in his own skin. When Nick’s siblings were younger, I would take them to classmates’ parties and spy anxiously through the door for a few moments, dying for them to find a playmate. If they didn’t find a friend to reassure them within 60 seconds, my (and their) stress levels went through the roof. I know: I’m pathetic. It wore off a bit with kid 2 and was long gone by kid 3. With Nick, there was no such anxiety. Nick just wanted a toy to play with. The other kids? Well, as long as they didn’t (a) take away that toy or (b) cause him any sensory overwhelm (things like; bursting a balloon or 5, screaming, eating yogurt in a gross way: how could any of these things happen at a kid’s birthday party?), then he was quite content.

I realise that not bothering to interact with others for much of the birthday party somewhat defeats the purpose of attending, but I still had a sense of pride in the fact that my son was happy in himself and needed nobody else for validation. In these days of social media obsession, how many of us have seen photos on Instagram or Facebook of young people crying out for approval from their peers (“Returning likes”)?  Ironically, there is something very healthy about a condition which completely removes the crippling need to fit in.

I am starting to like Aspect’s “A Different Brilliant” synopsis more and more.

Autistic or Benjamin Button?

One last thought. As a man in his late 30’s (very late; I am 45), I have to wonder again about the symptoms of ASD:

  • A reluctance to communicate with others;
  • Difficulties in relating to other people, and;
  • Irritation and/or anxiety at loud noises, flashing lights and people who eat gooey foods in a gross way.

All of these may seem strange in a child but do not seem at all inconsistent with most people over 40 years old. When you go to Aunt Vera’s 50th / 60th / Who-Cares-What-Age-She-Is birthday party, ask yourself 3 questions:

  1. Do I have the energy or enthusiasm, really, to converse with any other human here? Really? Or would you be secretly glad if the ceiling fell in?
  2. Can I relate to these people? Or do they all seem like happier, more successful, more energetic, more positive and definitely more annoying humans than you are?
  3. Am I enjoying kids bursting balloons? Am I enjoying the tiny disco ball effects? And am I really enjoying seeing small kids eat food in a way that smears most of it on their faces and clothes? Or worse: on my clothes?

Maybe the kids are not autistic.

Maybe they’re just 45.

Skip to the next post to dig a little deeper and find out more about the condition.

Next: A Cure for Autism